- To Change Your Mind - Details Matter
Celiac Notes: Opiate Withdrawal from Gluten and Casein?
The Black Swan Flies: Call the Black Swan, Be Ready
August 23, 2007Insulin Resistance: Metabolic Syndrome Essentials
September 16, 2007
Gluten Withdrawal, Casein Withdrawal: The Reality of Opiate Receptors In Recovery
Opiate withdrawal from discontinuing gluten and casein? Cautionary note: sounds absurd – until you see it. Evidence matters. Reframe the problem: Gluten withdrawal and casein withdrawal can demolish your recovery.
You might want to warn gluten sensitive, celiac and casein sensitive patients about this odd, frequent, and painful clinical phenomenon: Gluten Withdrawal after stopping wheat or Casein Withdrawal from milk products can be painful, exhausting, and depressing, with weakness, anger, and “brain fog” as subsequent downstream effects that can drive the uninformed back to their comfort foods.
Their “comfort foods” can create opiate withdrawal. And remember: Gluten sensitivity is far more prevalent than celiac disease. In fact, celiac disease is end stage gluten sensitivity, taking the whole discussion of celiac disease to a completely different level.
More Recent Data Confirms This '07 Report
See this more recent post/report on gluten sensitivity and celiac disease which teases apart new diagnostic methods to assess gluten sensitivity.
Case Review
I have a very interesting and refractory client in Ohio who has struggled for years with a variety of severe reactions to psych meds, suicidal depression, mercury toxicity, and became completely regressed on previous withdrawal of Prozac before I saw him in DC. With autoimmune issues in abundance and at times psychotic like feelings of loosing control we tested him for gluten/casein sensitivity, hit pay dirt with positive findings, and asked him to go on a gluten free/casein free diet [GFCF is the acronym].
He felt remarkably better at first, better than he had in years, then the withdrawal set in. Having had previous experience with addictive opiates prescribed for pain, he recognized signs of withdrawal immediately. First a note on the opiate receptors from Great Plains Laboratory:
The peptides from gluten [gliadorphin] and casein [casomorphin] are important because the react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds have been shown to react with areas of the brain such as the temporal lobes, which are involved in speech and auditory integration.
Children with autism frequently seem addicted to wheat [gluten] and dairy [casein] products. Presumably, people with Autism and schizophrenia incompletely digest wheat and dairy products. These incompletely digested peptides are then absorbed into the body and bind to opiate receptors, altering behavior and other physiological reactions.
And one more reference here:
Notes From The Book: Dangerous Grains
Below is from Dangerous Grains by Ron Hoggan:
The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath.
If you are a member of this group, the very fact that you are experiencing many of these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawal of detoxification from gluten-derived opioid and brain neurochemical imbalances. The evidence suggests that about 70 percent of celiac patients will experience these symptoms when beginning a strict gluten-free diet.
See other withdrawal comments at Celiac Forums and the Gluten Free Forum.
Another Reference: Opiates Withdrawal We See In The Office
From the Journal of Biological Chemistry – Opiate Peptides From Food Proteins April 10, 1979, 254, 2446-2449
– The take-home appears simple: if these symptoms occur, do go more slowly on the GFCF [Gluten Free Casein Free] diet, respect the opiate withdrawal process and support other nutritional and physiologic activities. As a side measure consider the importance of comorbid medical withdrawal issues from either casein or gluten. It may significantly altering neurotransmitter balance causing otherwise unpredictable cognitive and emotional symptoms.
Casein sensitivity, celiac disorder and gluten sensitivity now encourage a different treatment overview.
Videos: Gluten and Casein Testing Explanations
I'll welcome your experience out there with these matters so please do comment below, and weigh in on this important and overlooked matter. – And thanks to my anonymous contributor from Ohio.
cp
Dr Charles Parker
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205 Comments
Dr. Parker, thanks for such a great article. My 4 year old has been 99% grain-free for 3 years and 100% grain-free and dairy-free for the past 2 months. We are working with a doctor and have checked neurotransmitters (which are all out of whack) as well as other blood and urine test (he has sensory issues, ADHD tendencies and he started having having moments of terror about the most ordinary things). After treating for yeast as well we are seeing some improvements then this past Friday the babysitter gave him 2 pieces of cheese. I suspected he would have diarrhea but he didn’t. I left him with a babysitter on Saturday so I am not exactly sure of his behavior but on Sunday (and this morning) he gets scared when his 2 year old brother chases him down the hall. This is definition a new phobia. Could this be that little bit of cheese causing this? If so, how long does it take to get out of his system? It’s hard to see my little guy so anxious! Thanks in advance for your reply!
Melissa,
– yes could be cheese on the IgE side, not likely an IgG reaction. See this set of tests to learn more about testing… My best guess: Walsh, that first link see overmethylation: http://corepsych.com/tests14
cp
Hello,
I’m a 47 year old woman. I have alopecia areata and IBS. The only test I’ve taken a few years ago, blood test, said I wasn’t gluten intolerant. But my IBS, absolutely is better when following AIP diet. I’ve now had a strict glutenfree (AIP diet) for 4 weeks now. I’ve had a feeling of stuffyness in my nose that comes and goes since then. As if I’m allergic to something.
My question is: Is it common with nasal congestion symptoms, when quitting gluten?
Best regards
Camilla
Camilla,
You could very easily have missed other allergens, as it appears you are speculating. I don’t make recommendations w/o measurement. Short answer: withdrawal from gluten can show as a wide variety of symptoms – but you don’t know if your main problem is casein instead.
cp
Thank you for answering!
Best regards
Camilla
Thank you, Dr Parker, for answering.
It’s absolutely true I’m speculating. In my present diet I don’t eat any dairy products, egg, nuts, seeds or legumes. So I’m trying to figure out what it is causing my problem. I guess I’ll have to wait and see if it goes away.
Best regards
Camilla
Camilla,
Dig deep and spend some money on yourself – you don’t need me to read it, but we can order for you: IgG = http://corepsych.com/test14
cp
Thank you for your time.
Best
Camilla
This website was… how do I say it? Relevant!! Finally
I have found something which helped me. Thank you!
[…] Watch this video for specifics on Casein or Gluten Withdrawal Challenges. […]
It’s possible that dairy withdrawal lead to a psychosis?
I tried to quit dairy products cold turkey, i had various detox symptoms and after a week of feeling strange I had a psychotic break. Could the psychosis be a detox symptom of dairy withdrawal?
Thanks,
Gabe
Gabe,
More often than not dairy leads to psychosis, not the withdrawal from it. The symptoms can be quite profound… I’m just picky about the word psychosis. Not mentioned in this older post are serious comorbid conditions often associated with food sensitivities – see these several here:
http://corepsych.com/walsh-resources
If you balance the medical comorbid conditions, the liver, the gut health the withdrawal is easier.
cp
Thanks for replying.
Can you explain me what you mean by comorbid conditions?
When I say psychosis I mean that I was hospitalized and then prescribed an antipsychotic drug with the diagnosis of psychosis (at least that’s what the psychiatrist told me).
I can’t think that quitting dairy and my psychosis are just a coincidence, as I didn’t suffered with psychological problems before.
Quitting dairy caused me a severe insomnia, I almost didn’t slept for 4-5 days in a row more or less (don’t remember quite well).
Maybe sleep deprivation caused the psychosis? Do make more sense?
I went a little off topic, and I’m sorry for that, I’m really concerned about what caused my psychosis and I can’t find any other explanations. What do you think?
Thanks,
Gabe
Gabe,
Short answer: all of the above can contribute. Do homework on yourself at this page: http://corepsych.com/walsh-resources
Comorbid = connected with.
cp
[…] Opiate Receptors – Gluten Withdrawal & Casein Withdrawal … – Many experience side effects after stopping gluten or casein after immunity diagnosis. Gluten withdrawal and Casein withdrawal documented in the lit…. […]
[…] Opiate Receptors – Gluten Withdrawal & Casein Withdrawal … – Many experience side effects after stopping gluten or casein after immunity diagnosis. Gluten withdrawal and Casein withdrawal documented in the lit…. […]
Thanks for all this very helpful information and advice. I came across your webpage looking up gluten withdrawal symptoms as I had a really tough time over the last month trying to get gluten out of my diet. After a wonderful first week, I began to feel seriously depressed and fatigued and incapable of engaging in any of my normal activities; I also had a very scary relapse to an eating disorder which I’d gotten rid of years ago through hard work…All of this frightened me so much that I’m now back on gluten. My question to you would be: is there some way of softening this process? Can one for example wean oneself from gluten gradually instead of in a single go? And it would also help to know: can one anticipate roughly how long the withdrawal will take on a “cold turkey” route? (My reason for going off gluten by the way was to treat IBS symptoms through an anti-SIBO diet.) I will be grateful for your advice.
Sophia
Sophia,
Quite honestly it’s a bit more complicated:
1. Make sure you don’t suffer with another associated, but ill-defined, allergy aggravating the withdrawal process by keeping your villi damaged.
2. Often support with medications proves a failure as neurotransmitter levels are so low they can’t become responsive to meds that attempt to collect them: http://www.corepsych.com/2012/09/adhd-insights-neurotransmitter-chickens/
3. Clearing the liver with first Phase II, then followed by Phase I and II cleansing can help as liver congestion creates a poor response to recovery… meds can’t find their way to the synaptic receptor sites.
Stay with the plan of going off gluten, and treat/heal your bowel and liver, then try neurotransmitter precursors like 5HTP, they sometimes help.
cp
So Ive been kinda skimming thru this stuff…and being I had an opiate dependence at one point, its starting to make more sense…I dont notice any allergies or anything but I can drink (and do regularly) a gallon of whole milk in like 24 hours…Buy a gal one night and the next nights its gone..sometimes I can drink over half a gallon in just a few hours, no joke…I dont know what it is I just love drinking milk…Im starting to realize Im a milk addict lol…I need to change this huh? Im skimming thru and reading about celiac disease and ADHD and tryin to connect the dots since Im starting to realize why I limilk so much…obviously the casomorphin…that I never even knew existed until tonight
Derek,
You may not have seen this article and video at CorePsych on The Devil in Milk, and the book is strongly recommended: great references.
cp
Hello Dr. Parker,
I am 56 years old and have been gluten-free, grain-free and dairy free for 3 months. I have lost 21 pounds and my lipid profile has dramatically improved. I am happy with that. The reason I am writing is to ask if it is uncommon to experience increased anxiety and poor quality of sleep. I tend to wake up at 6AM each morning. I use to sleep through-out the night. I simply don’t feel well. Some joint pain and again some increased nervousness. I was hoping after 3 months this would have gotten better. Appreciate any comments you have.
Thanks
Ron
Ron,
I’ve seen significant symptoms months down the line, – 6-7. I don’t know what the specific issue is and if you find out please tell me. For the time being I chalk it up to inflammation that is yet unresolved, and to liver challenges with the new burden of dealing with that shift in detoxification and healing.
My suggestion: work with your caretakers to heal your gut and clean out your liver. Those two objectives are the most frequently overlooked after changing the diet.
cp
Thank you very much.
Ron
Hello,
I am going gluten-free for second time in 6 months. Withdrawal is terrible: flu-like symptoms, headache, upset stomach, bloatin, exhaustion and weakness. Last time these lasted 3 and 1/2 weeks.
My question: These symptoms feel a little like withdrawal from psychotropic medications (paxil, abilify, klonopin). Could my exposure to these meds (I was on them for years, and still take some others) actually make my gluten withdrawal worse? Especially because receptors (of serotnoin, etc.) may have been compromised by my taking of these psych meds?
Help appreciated.
Elizabeth,
Excellent question, and no is the short answer – but from my research, they are connected in a different way. I obviously have not evaluated you for this next remark, but I see it so often it merits a guess for your further care: My experience in these parallel matters is quite consistent over hundreds of measures of neurotransmitters [Search CorePsych for Neurotransmitter posts] over the years – the underlying metabolic challenges you quite likely have from combined bowel and subsequent liver dysfunction create those imbalances that demonstrate as diminished neurotransmitters at the synaptic level.
Neurotransmitters are down because of the trace element imbalances, the relative malnutrition with either over or under weight, and associated hormone disruptions as well, either estrogen, adrenal or both. With very few chickens in the synaptic ranch you are sensitized [your specific receptor sites] and raw, for want of a better expression, but will improve if you undertake clear liver and bowel rehab, as well as neurotransmitter rebalancing. This takes some time, could be 3-6 mos, but think of the years you’ve had the problems. –
Thus your profound reactions are more metabolic than medication related. You probably had similar probs w meds at discontinuation. Hope this helps,
cp
Hi Dr Parker,
I am pretty sure my wife and now my daughter have had (5 years ago) and are having casein withdrawal symptoms. They were both on pretty heavy dairy intake and then stopped. A week later or so, both of them went almost catatonic where they stopped eating and drinking and would not communicate. My wife would not eat for 6 weeks but my daughter started eating after a week. We had to make sure that they were taking enough liquids in to not get dehydrated. My wife had a lot of schizophrenia as did my daughter. The difference with my daughter is that she has pretty severe short term memory loss and is confused much of the time. Her episode started the day after Christmas and is still affected. She is now able to eat and drink with no hesitation but the mental fog and schizo affective behavior is very prevalent and shows no signs of abating. Our friend suggested a ketogenic diet with parent essential oils and organic coconut oil which we have been giving her since she could eat again. She had racing thoughts and voices for a week that kept her from sleeping but the past two nights has been able to get more and more sleep with the aid of some timed release melatonin.
Am I on the right track in correlating my wife’s and her symptoms to casein opiod withdrawal? Or are my daughter’s symptoms too severe for that? Right now we are waiting it out because my wife took 6 weeks to get over it and we theoretically have three more weeks with my daughter (she is 19 be the way).
Jeff,
It’s important when thinking of complex issues like immunity [and possible dependence] not to try to understand these issues by thinking in terms of “only.” Categorical solutions don’t work with complexity challenges. More likely than not your wife and daughter suffer from a complexity of issues – and even if they “only” suffered with milk dependence I’ve seen many completely deteriorate emotionally going off casein.
Schizophrenia often requires more careful psychiatric attention first, with meds, and if the metabolic problems have existed for years [likely], then find a local nutritionist who can guide your family through bowel healing. I’ve seen many who suffer with major, schizo-like symptoms with casein dependence, based on immunity issues, metabolic problems, and relative malnutrition which gives little biomedical support for any life stressors.
Yes, opioid withdrawal can cause significant feelings of sickness and GI upset.
cp
I have: Hashimoto’s, Celiac disease, IBS, PCOS, pernicious anemia, eczema and am a recovering alcoholic. I recently noticed that being gluten free wasn’t enough and that now dairy is adversely affecting me. Every article on gluten free/casein free diets seems to be aimed at autistic children. Is there any literature available on what I should eat as a non-autistic adult sufferer of multiple autoimmune disorders? Is there a GFCF diet or nutrition book NOT geared toward autistic children? I live right near the Amen Clinic in Newport Beach, CA and they offer SPECT but don’t list autoimmune disorders in any of their info – it seems to be all about selling me supplements. Confused. Thank you so much for any info you can provide.
Amy,
Amen clinics are the best in the world at SPECT, and are only lately, and spotty individuals at that, grasping the point that immunity is an issue.
One person I know who is either in LA or San Diego wrote this book: Why Do I Still Have Thyroid Symptoms?. Datis Karrazian. And see this entire list of books on Immunity at CoreBrain Books – especially Grain Brain by Perlmutter.
We do consults internationally and would be happy to pitch in through our CorePsyh.com/services page. Consider a complimentary call to answer your questions thru Desiree there.
cp
Hello, I’m 24 and I have just started eating a GF/CF diet and definitely have a gut that sticks out. I also, have been having progressively worse stomach tightness since January this year and not been able to eat without vomiting, but I went to the ER and they said everything was fine according to there CAT scan. I have been losing sleep and having insomnia due to this also, as well as feeling disoriented delivering pizza’s which is my job since I was 18.
However, I was starting the diet due to having social anxiety, OCD, Depression, Tourette’s syndrome as well as fatigue, ADD and a learning disability. I belong to the gluten free society website and got the delayed allergy test from Elisa ACT or whatever it’s called. I have some probiotics from there and ultra immune IgG which contains IG A, M, E, and D. First off, the Elisa act test said I didn’t have an allergy to gluten or eggs, but can I still be affected by them?
My next question was, what other steps do I need to take in order to make my withdrawal symptoms from gluten and casein less painful and quicker and how do I access them? I saw something about trace elements and Neurotransmitter tests needing to be tested. What exactly do these tests reveal and how expensive are the tests as well as treatments used to resolve them? Also, glutenfreesociety recommended getting a nutrition deficiency test but I don’t have a lot of money. Will this make a difference not knowing what nutrients I’m deficient in, or do they get easily absorbed once your villi are healed. I do know that I am deficient in the B vitamins, but for some reason, the methylcobalamin(B-12) I ordered from gluten free society makes me anxious and irritable.
It sucks that my symptoms are the reason I can’t easily understand all this information and afford it easily. If you could tell me the steps to take and tests needed I would appreciate it. Also, out of curiosity, if I don’t get any of these tests done and I’m not able to absorb my food or have trace element issues, NT problems, and etc. how long would my body take to heal and would it still be able to heal? Also, should I continue this GFCF diet, (it’s only been a couple of days), or wait until I find out what tests I should get and should I postpone it until I found out what’s wrong with my stomach. Lastly, have you seen cases of Tourette’s syndrome and social anxiety get completely reversed in your practice? I just want to not be depressed and anxious for the rest of my life or from withdrawal and I don’t want to be saving money for the rest of my life on other tests if I don’t heal like I should.
Austin,
1. Too early to tell how the diet will work out – the admonition there: follow it.
2. Withdrawal is encouraged by the many deficiencies downstream from your problems. Best to stay w the most hypoallergenic foods, get exercise, and yes, often NT testing can speed the recovery process. Probiotics a must.
3. Trace Element and NT testing: Cost 51$ and about 200$ respectively.
4. Strange reactions to B12 typical downstream from food sensitivities… often nothing seems to work, meds, vits, NT precursors. Stick to the diet, can be better in 2 weeks, sometimes 3-6 mos to heal.
5. Yes we deal w Tourette’s but that one is more complicated because you almost have to be here in town for the Neurofeedback. If you have NFB in your town we can often get all the other subsets addressed long distance.
6. A low cost start would be simply TMA which can tell you a great deal. You likely need to take some digestive enzymes, they might be helpful, but can’t tell with this brief note.
7. Nutrients do appear to help even if villi aren’t completely healed – patients do report feeling better.
8. The nutrition deficiency test would be helpful, but would be down the line for our work, as these others need more direct attention.
9. The ELISA act test is deep, helpful, and costly. If you have problems w results following that one I suggest 219$ test by Great Plains for IgG… it’s held up well in our office.
cp
Thank you very much. I’ll stick with the diet. What does “TMA” stand for?
Sorry Austin,
Check out the links on this missive: http://www.corepsych.com/2012/09/adhd-insights-brain-trace-elements/
cp
My daughter has constant congestion in her sinuses. It goes away with antihistamines but we don’t want her on drugs daily. I try to have her go gluten free but she does have dairy. When she was two a holistic pediatrican did IgG testing. According to that she couldn’t have citrus, oats, and lots of other things. The doctor wanted her to have a strong vitamin supplement but the holistic pharmacy said it was too strong for my daughter. I stopped going to the holistic doctor after that. My husband said to ignore the IgG test because he feared it would result in malnutrition.
I have gluten sensitivity. I put my daughters on a gluten free diet early on because they would itch severely.
See your video, I see that I should dig the old IgG test up and have her follow that. It will be difficult. Should we see a nutritionist to see how to supplement her?
Angela,
Details matter, yes dig it up – and yes a nutritionist would be helpful. Just don’t buy the idea that you only have to practice the diet for 3-6 mos. My experience: Changes work more consistently if you all stay on the program.
cp
My son age 6 has been gluten free ( my choice) due to reflux / heartburn. Symptoms disappeared. Completely. Now Drs want him to eat gluten to be tested for coeliac. We reintroduced gluten his sleep is erratic, he is aggressive, moody, irritable. Is he experiencing highs and lows from the gluten.
Hayley,
While I don’t usually agree with the principle of using the “elimination diet,” – in this case it worked. The traditional way of checking for celiac, in my own opinion, misses the more profoundly important challenge of gluten/casein/egg sensitivity. My strong recommendation is to forgo that outdated testing and get on IgG as a means of really looking at contributory allergies.
This posting will help: http://www.corepsych.com/2012/10/adhd-insights-adhd-medication-sensitivity/
And this full on YouTube Video Mind Gut playlist covers even more details: http://bit.ly/mindgut
Hope this helps!
cp
Hello, I started a gf diet because i have me/cfs. After about three weeks my speech began to slur, then my tongue swelled up and then once it went down i coudnt form words well. Went to a and e, they did a brain scan and are saying its likely its ms. My speech is fine again and i feel better for the diet but i am terrified. Do you think this could have been some temporary brain swelling from the withdrawal of gluten? Thank you for any help.
Leis,
Highly unlike that was related to withdrawal from Gluten – more likely in the process of detox some other elements were mobilized on some level and you had a toxic reaction. If you had/have MS, that reaction didn’t cause it, it likely only aggravated a quiescent pre-existing condition. Very unusual. Your prognosis is more encouraging and positive in the sense that it took a real insult to reveal the issues. Strongly recommend IgG testing and Trace Element Review.
cp
Thank you very much for your reply. I was hoping it was down to gluten withdrawal as im terrified at the ms diagnosis. My speech is totally normal again and head clearer. I have had cfs for 11 years. Could the spots they seen on the brain scan be from gluten ataxia?
What kind of elements could have caused a toxic reaction? Another food allergy or medication or something thats been trapped in my body a long time? Im very worried and appreciate your help.
Leis
Leis,
We could speculate for the next 10 years, but speculation will only serve to add more anxiety. Reality has some answers – strongly suggest biomedical inquiry for real facts, real data. In the meantime your educational interests would be served by reading about Herxheimer Reactions here – keeping in mind that herx reactions can also occur in simple detox processes not associated with bacteria.
cp
Thank you for your help Dr Parker. I will read the link you suggest.
Best wishes, Leis
Leis,
And PS, spots on the scans, depending on the scan type, can be related to injury from Gluten – and can be reversible with careful attention.
cp
I am curious as to any reports of heightened aggression when going off of gluten?
My oldest son has FPIES and milk proteins are the main culprits. Even though we were told he would outgrow them by 2yrs old, he didn’t and unbeknownst to us we gave him milk for years before removing it and discovering he had FPIES. Well, according to his pediatrician he shows all the “classic” symptoms of Celiac’s but, when they test him 1 – 2 times a year, he always tests negative. They were so convinced he had it, they scoped him from top to bottom. So, after several years of testing I finally just asked if going gfcf completely would be the most advantageous to him. Of course he answered yes.
My son is a special needs kiddo. Tourette Syndrome, ADHD, OCD, Sensory Processing issues, ODD, etc. Once diagnosed with Asperger’s, which as you may know no longer exists in the DSM. Anyway, when we removed him from milk day 4 or 5 he went ballistic. It was really awful but, within the week, he began to eat more, the dark circles under his eyes went away, his personality completely changed within the following weeks.
I ask because we are about 4 days into GFCF and he’s become worse in behaviors than he’s ever been. Today he carried on full out screaming in his OT/PT/ST’s office! People in the other offices were coming out to look even! I’ve never seen him this bad since removing him from milk proteins. He’s also extremely hyper, more so than he’s been in a long time. Maybe I’m grasping at straws but, could this maybe be a result of removing gluten now too? As I said once before, when he was removed from milk proteins he got a bit aggressive but, it’s been some years since then. I was just curious if a detox from gluten could cause such a severe reaction.
Thanks for your time.
Em,
The short answer: with gluten or casein withdrawal: Expect the unexpected. Highly likely that withdrawal is the problem, and more profound withdrawal symptoms are often encouraged by the remarkably imbalanced neurotransmitters so often seen downstream from the *chronic* relative malabsorption [even though a child]. I also think you might actually get an IgG test for him, as it didn’t sound like you have a full IgG on your table yet, – and so often other contributing factors can create significant problems. In our offices we see eggs second to milk, and gluten a slow third in that lineup of frequency. A profound egg problem on top of withdrawal could aggravate issues – and then do think about trace elements as well – trace elements play an important part in the enzyme activities that balance neurotransmitters and are often completely diminished by problems like FPIES [see the link for those unfamiliar].
Hope this helps, Em,
cp
Thanks so much for your reply. No, we’ve not gotten an IgG yet. My son’s pediatrician would not do any of those tests. He’s fought me a lot of the way through. I’ve since switched pediatricians, just a few days ago really, to one who is willing to put away the prescription pad until after she’s listened to my concerns! I had an appointment to meet with her the other day and she also suggested things like trace elements and eggs as well. Which made me feel like we might finally have the right general pediatrician! Now, we work on the neurologists, psychologists and the developmental behavioral pediatrician and hopefully we can get a great team together eventually.
Thanks for taking the time to respond. It’s nice to see your videos and read your blog and feel like there are doctors out there who actually “get it”.
Those of us who get it are growing steadily in numbers: Neuroscience Evidence Changes Thinking! 😉
cp
Hi Dr. Parker,
I am a Pharmacy student who is having trouble doing well in school due to severe brain fog, memory loss, fatigue, and chronic orthostatic intolerance. All of these symptoms began suddenly after I ate a big piece of naan bread with chocolate hazelnut butter and peanut butter on it. I mention those foods because I’m fairly certain I’m intolerant to all of them (even the chocolate). I’ve considered the possibility of a immune overreaction due to the fact that I had been exercising strenuously on an empty stomach prior to jamming all of those allergens down my throat.
Anyhow, there was clearly gluten in the naan bread and my symptoms have been getting worse despite cutting all of those foods out of my diet (except the gluten). I just recently (5 days ago) cut the gluten out (plus casein, eggs, others) and have been feeling worse (more headaches, brain fog). Am I going through withdrawal? All I’m eating right now is tons of rice, some olive oil, grilled chicken, and some GF potato chips. Could I be intolerant to any of those things?
It has been 6 months since I felt clear-minded (this condition is chronic) and I am at the end of my rope. Should I continue with this GFCF diet or do you think I’m wasting my time and need to be doing something else?
Thank you.
PAT,
Excellent questions all.
1. Never wrong or waste of time to address offending antigens.
2. Withdrawal is highly likely especially if you have had this prob for years.
3. Don’t even mess with the antiquity of the “elimination diet”- you’ll be like an
old bloodhound laying in the sun trying to bite at flies. You’re a deep science
guy, just measure IgG… and in your case IgE for wheat, chocolate and whatever. No
science is nonsense. You already know that. In brain matters neuroscience testing is
essential. See this playlist if you haven’t already checked it out. http://bit.ly/mindgut
4. Just what to do with the withdrawal varies – may need a bit of an antidepressant
to cover serotonin imbalance, or a benzo to cover GABA… just speculation here,
more careful review would be instructive.
Summary:
Measure, then correct instead of fiddling around. Commonwealth Labs will cover the big three in detail for about 8$ each food.
For those with insufficient funds we rec the following: Milk, Eggs and Wheat, then Peanut, Soy, and Almond to see what the switch
milk might be – total about 48$.
cp
Hi,
i have been gluten free for about a week now i started developing alopecia and hi yeast fungal rash on my neck and shoulders so i decided it was time to start gluten free i have a sensitivity already known and took a celiacs test as well but have not gotten results yet i took that about 2 months ago.. could this alopecia and fungal rash be because of the gluten? im also having horrible side effects with the headaches so tired and feeling nauseous today..
Abby,
All of these symptoms can reside downstream from IgG challenges with gluten, – but remain ever vigilant and prepared as follows: in my office we see far more milk and egg allergies, so just consider further IgG testing.
cp
Dr. Parker, I first wrote to you in 2010, perhaps on this very thread. First, I want to thank you because after dealing with a myriad of well meaning physicians, even GI’s, in the past couple of years, I think that you may be one of the only doctors who “get it.” I hope that more of you will spring up.
When I wrote to you two years ago, I had just gone gluten free due to severe brain fog/dizziness issues. I soon found my symptoms heightened due to withdrawal, but after a few weeks, everything calmed down and I began to feel much, much better as long as I did not ingest gluten. But the biggest strides in my feeling of well-being and tremendous health (i.e., today feeling like a 20 yr old @ the age of 57), came only after I also totally removed casein and soy from my diet back then. To this day I get dizzy and nauseous ingesting even an accidental trace of soy. I’ve developed a better tolerance for some forms of dairy but I avoid it anyway, and of course, I am very careful about no traces of gluten. Needless to say, I don’t eat out a lot, but I miss that.
I have not been diagnosed with Celiac and will never know definitively (went gluten free before undergoing testing) however I know I inherited the gene from one parent that predisposed me to that disease. If after two plus years of strict avoidance and still reacting to the secondary intolerance, SOY, is it possible that I could someday build at least a tolerance to that particular cross contamination? Does my genetic disposition play any kind of role in my problems with casein and especially soy as intolerances secondary to gluten?
Again, thanks for all you do.
Karla,
My take at this time, having for years witnessed folks after second level opinions raised regarding going off their diets, stay the course for your lifetime. My bias arises from multiple clinical events wherein we tested for IgG, found the problems, corrected the diet, and then, back home a nutritionist or other doc said: “You’ve been off it ___ mos now [fill in the blank], so no problem, just reintroduce those foods slowly.” The big problem with reintroduction is simple: IgG reactions often DON’T show symptoms, so the feeling is: “Hey, I can’t feel any deterioration, I must be OK.”
Don’t mix IgG apples with IgE oranges: IgG reactions differ from IgE reactions as noted in several blog posts and Cinchcasts here. IgG you don’t feel, so you’ll just go back to the slow corruption of your gut as previously, and you’ll most likely return to live downstream from malabsorption and cytokine storms that interfere with neurotransmission… but you don’t feel completely sick. I can’t even begin to estimate how many times I’ve seen these issues clinically.
Hang tough, you’ll be grateful in the long run.
cp
Hello Dr. Parker, Thank you for further exploring this issue. I feel as though I am in the small amount of people that are experiencing extreme withdrawal symptoms of going gluten free. I especially gravitated to the quote from Dangerous Grains which mentions “shortness of breath”. The fist time i found out i was allergic to wheat was on the farm while my dad was harvesting it, I had my first asthma attack at 6 years old. For some reason eating wheat didnt ever seem to trigger my asthma, but breathing the dust from wheat during harvest was killer to me. Fast forward to now and I am 32 years old, normal weight, and addicted to beer and all types of bread. I went on the atkins diet a few years ago which was accidentally gluten free and after 5 days became so lethargic and foggy, and ended up at the drs office for extreme breathing difficulties and wheezing. It seemed as though as soon as i began eating carbs again I was back to my normal self. Now here I am attempting to go gluten free again because I would have shortness of breath just after drinking 2 beers! I know I was extremely addicted to breads and beer because that was mainly all i craved and would consume. It has now been 2 days and I woke up in the middle of the night with shortness of breath out of nowhere. I had to take my albuterol inhaler to get back to normal. My question is can the withdrawals of quitting gluten cause extreme shortness of breath and is it dangerous for a person like me to quit cold turkey as I have done? I dont want to be addicted to breads the rest of my life and have ibs and asthma from drinking beer but I dont know how i can live through these withdrawals that seem just as bad?
JJ,
Likely you have, at your young, age a few more contributory factors going on in addition to straight gluten withdrawal. Confirmation of shortness of breath [SOB] here and multiple sites: http://www.wellsphere.com/healthy-living-article/adult-diagnosed-celiac-disease-the-challenges-of-going-gluten-free/537413
The longer I’m working with casein and gluten withdrawal the more I am impressed by the serious aggravation of symptoms following neurotransmitter imbalances and trace element imbalances secondary to the relative malnutrition over years. You can see the deficiencies on testing. Those several possibilities [many neurotransmitters and many trace elements] can significantly contribute to the worst withdrawal symptoms.
My suggestion: measure and correct the side issues, then your recovery from gluten is quite possible, often in a short period of time.
cp
This is so bizarre. This could possibly explain so much about my entire life. I have thought that I have high functioning autism for about 10 years now though I should probably have been able to tell from the ways in which I was different many years before. I used to drink so much milk that my mother would stop me drinking milk, at one point 6 pints a day. I did use heroin in my youth for a number of years but then one day decided to stop and really didn’t have the same level of difficulty that most people seem to exhibit. It was easier to turn my back on than smoking.
I left that life behind about a decade ago but last year I found that I couldn’t eat wheat or dairy any more. I was collapsing and had to sleep through lunch breaks and couldn’t sit up in a chair. Since having stopped wheat and milk I have become an obsessive eater of raw oats and have also started using over-the-counter pain killers containing codeine a little more than I should despite having been drug free for a decade. This article is therefore incredibly fascinating to me. I will be researching this area far more.
Harry,
You are an excellent candidate for more clear testing – specifically a low cost [we give you the test and you pay 46$] Tissue Mineral Analysis, – we do charge for reading it. It tests, as we’ve seen in many opiate abuse folks, 30 trace elements and a convincing number of heavy metals, any of which could provide serious feelings of unbalance and thereby become relapse triggers.
cp
stopped drinking milk 2 days ago. couldn’t sleep last night. feel light headed and pressure in the brain today. minor speech impediments. hopefully doesn’t get worse.
@DandateDate The good news: it should get significantly better quickly – if it doesn’t your neurotransmitter system is corrupted by leaky gut and insufficient chickens at the synaptic ranch… all measurable and correctable, so chin up!
[…] an overload; of casein in their bloodstream that crosses into the brain and induces an opiate effect, creating dependency and neurological impairment. Culturing (fermenting) milk breaks down […]
im going crazy i have been gluten free for two weeks and feel like crap. my head has hurt for 5 days a weird headach tension almost and sick to my stomach anxiety and lightheaded foggy… i also have crohns disease and is why im stopping gluten. how do i know this is gluten withdrawl and not crohns or something seriouse i should go to doctor about… is this gluten withdrawl is it normal to have weird headaches
@SarahManning This kind of difficult Gluten withdrawal is a key finding, almost always seen with Crohn’s, or, in fact, any significant immune challenge with the bowel dysfunction. The problem is at once simple and complex: the Transit Time changes and associated neurotransmitter balance remarkably deteriorates the specific neurotransmitter levels – measured and witnessed hundreds of times, not once in a while. Several interventions need to happen almost simultaneously to correct the withdrawal experience:
1. Measure qualitative, not quantitative, IgG and correct your diet for any other immunity issues such as milk or eggs which will contribute to additional ongoing imbalances.
2. Correct neurotransmitters specifically as measured with neurotransmitter levels with urine, we use NeuroScience and Pharmasan Labs.
3. Use psych meds to help collect the neurotransmitters on the short run to help with the emotional chaos that comes from the withdrawal.
4. Remember that the opiate receptors are part of the problem, but my sense of it from the office work is that the greater the neurotransmitter imbalance the greater the problems going off.
cp
We just did testing and found my daughter is right on the bubble of a casein intolerance, but showed gluten was OK. (also showed high yeast, and high strep levels) Doctor wants her to go off dairy, and we have for 2.5 days now. She has a fever today, and her back has been itching. They also did skin testing 2 days ago (skin test was negative, but the blood test showed the intolerance). Could her fever be linked to going off of dairy, and/or the skin testing? How long should it take to see positive results in her digestion and sensory issues?
@bunewkid Thanks for asking, – it’s unlikely. Her resistance is likely down with the immunity challenges in the first place, and it’s not likely a withdrawal issue. Usually improvements occur in 1-2 weeks, often days, if not complicated by other undiscovered contributory factors.
cp
I’ve been gluten-free for about 12 days now.
I’m 21(female) and for the first time in my (albeit short) life my stomach does not hurt *all the time*. I felt the effects on my stomach almost immediately (and the effects on my wallet – ouch). However, the withdrawal is just now reaching its peak. Last week I just felt kind of… weird, it’s difficult to explain. I have chronic pain / fibromyalgia / migraines / anxiety / depression and I hope that my new eating habits will eventually help all of these health ailments, but right now it’s almost unbearable.
I’m extremely irritable, had a ‘not normal’ headache for the past few days, been dizzy/more tired than normal, having trouble sleeping/nightmares, feeling terribly unbalanced mentally, and had a low fever for two days. I’ve also been eating less, but my hunger is satisfied by a smaller amount of food.
Even though the process for me very painful physically and psychologically I am definitely sticking with this diet. I just hope these awful feelings don’t last too much longer.
@Larad Just time for a short supportive remark: Stay on it, you will get better, and when off, don’t go back. If troubles persist with the fibro I strongly recommend an inexpensive test to assess Trace Element imbalances and tweak your electrolytes… will be blogging more about this soon so stay tuned.
cp
[…] Celiac Notes by Dr Charles Parker on August 2007 Celiac.com Dangerous Grains by Ron Hoggan Gluten Free Choice Consulting by Wendy L Cohan, RN, […]
I saw a commentor who was angered by the comparison of gluten etc. to drugs.
While, no, you don’t get a legitimate “high” from eating a piece of bread, I can say that from experience I got a rush of “good feelings” and a feeling of satisfaction that other food doesn’t typically offer me. I came to realise eventually that this was an addiction, and that I very likely had an intolerance or allergy. About a week ago I stopped consuming gluten and have noticed that I have been feeling dizzy (particularly at night). This feeling of dizziness can be very accurately compared to withdrawals from a drug I had been taking for anxiety (Effexor…ironically, I believe the anxiety was an issue BECAUSE of gluten…I have found that overall my mental situation has improved after stopping gluten but I have been having occasional anxiety attacks…can this be connected to the withdrawal as well, Dr Parker?). Mind you, the effect isn’t as strong as it was with the drug withdrawal (yet…hopefully it doesn’t get worse!), but it is there and it is real. If you really think that addictions are limited to drugs, think again. Just look at people who are addicted to games like World of Warcraft, or even social networking like Facebook. These are accompanied by their own slew of withdrawal symptoms.
Mary,
Strongly recommend you go to my CoreBrain Books listing on the nav bar here and go to CoreBrain Training, then below that to Neurotoxins etc, and look at the book: Why am I always so tired? by Dr Gittleman – My very distant speculation is that you might have a problem with trace element imbalances, and the withdrawal is highlighting other possible issues explained therein.
cp
Mary,
Absolutely: fibro and gluten/casein are often connected. There are many reasons you are having withdrawals including the strong possibility that you have other immune system dysregulations in the first place.
Withdrawal can last months if you don’t take care of your gut, add gut healing supplements and get rid of any other food corruptions, measured thru IgG.
cp
I’ve now been gluten free for just under a week, and I’m feeling it already! There were stomach disturbances to start with which have now improved, but I’m still getting nausea, brain fog, sometimes almost a panicky type of anxiety and very emotional. The dreams are getting stranger! Although I feel hungrier and definitely more tired come the evening there have been no cravings as yet. Perhaps partly because I’m not entirely cutting all sugar out yet and am having potato snacks to help soften the blow, I’ll cut those out later! Thank you for the info here, it helps to know I’m not going mad. :o)
Sara,
It’s pretty spooky to see these symptoms downstream from foods you love. Hang in there and always remember: stay persistent on the path, if you don’t succeed you’re very likely missing something.
cp
Sarah,
Likely you will feel a bit mad when you take the next step, if indicated, on casein – the most common allergen we see in our offices daily.
Sorry, hope it works out without this next step!
cp
I have gluten withdrawal symptoms – what does that mean? Am I a celiac? Am I just allergic? If you have withdrawal symptoms does that make gluten an enemy? Confused.
If you have withdrawal you could easily suffer from an aspect of *addiction to gluten* – the point of this piece. Celiac is a far more advanced condition of villi deterioration and gluten sensitivity is far more common. See IgG notes by Searching here for more on these several issues.
Hi I have been in gluten withdrawel for close to 2 months and the fatigue in unbareble . is there anything i can do about it is this normal ? i smoke does that also affect the withdrawel . thanks
Cottage,
Withdrawal is significantly amplified by neurotransmitter imbalances caused by the previous bowel pathology. You weren’t absorbing nutrients correctly or else you would have had a s shorter, less intense drop.
Suggest several options:
1. Do consider a serious probiotic program and get your gut rehabed – get the broadest spectrum if you go OTC, if you connect with a practitioner familiar with gut rehab all the better.
2. Spend the bucks and get your Neurotransmitters tested. They will correct after months of health, but why not load those precursors on there and feel better faster?
3. Make darn sure you aren’t suffering, as many do, with other immunity maladies. Gluten is #3 in our offices in prevalence – Milk and eggs beat gluten in frequency and measurable imbalance in about 75% of cases. Gluten is only one tip of the iceberg – thanks to attention from the popular press.
cp
thanks for your reply this really helps , I am a bodybuilder and when i couldnt bodybuild i looked to ciggs for comfort i usually am really active person and im ready to start lifting again ( just no energy to do it !) I went to the phiefer institute for schizoeffective dis. and they ran a bunch of tests on me and found out im pyrolura i have high histamin and high coppper im now on mega doses of vitamins . wheres the best place to get NT testing done and how much does it usually cost? lol sorry to bug you there just limited info everywhere . thanks again ( and sorry about my grammer )
Cottage:
Have seen many folks with mood disorder downstream from trace elements and subsequent NT disturbances. I would call NeuroScience to see if they have a list of docs where you are, or go to Services here and set up a chat. NT would likely be quite helpful.
Solid, Little! Congrats!
cp
How long do the withdrawals from casein and gluten last? Diana
Rascal,
Depends on the seriousness of the bowel compromise, the nature of the neurotransmitter balance, and the variety of unrecognized additional challenges e.g. from milk and other antigens.
Can be months, can be weeks. Best bet to get IgG testing [qualitative] and get it all straight before spinning your wheels.
cp
Dan,
Thanks for weighing in on this gluten/high/opiate receptor phenomenon… Who can say definitely that your reaction was directly related, – but, on the other hand, I’ve seen it quite often if we chase down the specific answers to those specific reactions.
I’m sure some other readers out there have experienced the same flips. Remember: that problem with that reaction in less than 48 hr is most likely the IgE reaction. So often those with IgG maladies look for IgE reactions such as yours to ascertain recovery from gluten sensitivity – and completely miss the implications of long term immunity-related mind damage when they don’t experience physical reactions such as you describe.
Thanks!
cp
Hi,
I started a wheat, dairy, alcohol and caffeine free diet two weeks ago in order to try and reduce my terrible pmt (very low mood, lethargy, joint and muscle main) in the week leading up to my period. I have also suffered at times from depression and low energy at times other than prior to menstruation. I currently take an SNRI to ameliorate depression/anxiety. I thought I’d include that information as background. The main reason I am posting here is because having been on my no wheat etc… diet for two weeks I am still experiencing withdrawal symptoms. The horrible headaches have passed but I am still more tired than I used to be when I could eat bread etc… – I want to be in bed by 7.00pm each night and find it hard waking up in the morning. In addition I have noticed that my mood is more depressed than usual too. Is it normal for withdrawal to last this long?! Is there anything I can do to feel better?
Many thanks
I1982-
The problem you are having is at once easy and challenging. Withdrawal continues if the underlying neurotransmitter [NT] imbalance created by the hormone dysregulation and the relative NT loss leaves those synapses gummed up and sometime broken.
Strongly suggest NT testing and Full on IgG to get to the bottom of the probs.
cp
Jonathan,
Strongly recommend your twitter account, Dr Davis, and Dr Kruse – you all are doing a great job of updating the public with the latest info!
cp
I found out that I am gluten and casein allergic and have stopped eating any dairy or gluten and I feel sick. I have not had anything for 11 days and I’m having a hard time eating. I want to throw up after I eat even on zofran and prilosec. I am very light headed, tired, constant stomach nausea, sweating/chills. Almost every night after dinner I feel like I’m having an anxiety attack. How long will this last and can I do something about this feeling so I can eat?
Mm,
I’ve been writing and speaking about this problem for about 5 years now – this is a specific post from ~ 4 yrs ago that has details and references for the phenomenon.
What this post doesn’t cover is how to correct the withdrawal. Here are some points:
1. Stay on the path, continue with your project with GFCF diet,
2. Supplement with
a. Shotgun approach – Essential amino acids
b. Highly specific approach, recommended: measure and get the data on neurotransmitter [NT] imbalances – Specific neurotransmitter precursors from that testing [you are very likely N] low and raw at the synaptic level with a kind of discontinuation syndrome]
c. Excellent multivitamin added
d. Broad range trace mineral supplementation – stay tuned will be talking about this.
e. GI Repair, available at the CoreBrain Store on the nav bar – neuroscience… your probiotics and bowel health is likely significantly compromised
No guarantees with these suggestions these are shotgun and have been helpful with many, you may have other mitigating issues not address because these are only general remarks.
cp
Dani,
Your findings are indeed typical of food sensitivities, and yes we send them out to the UK, to and, for example, to South Africa, so not a problem. We’ve seen goat’s milk have considerable sensitivity, even beyond cow’s milk after specific testing.
As a result of measuring these issues for years now, I have come to the conclusion that I am almost completely against bothering with an elimination diet, as it just doesn’t adequately cover the details, and do become quite wild when physicians diminish evidence in the context of knowing nothing about it. Come on doc, give me a break! I won’t speculate about what you do if you don’t speculate about what the laboratory has reported and you just don’t get it.
Go to the services page, email Sarah there and we can get you set up with testing and a consult, no problem. We do Skype, FaceTime, iChat or just phone depending on your computer relationships!
cp
Dani,
Your findings are indeed typical of food sensitivities, and yes we send them out to the UK, to and, for example, to South Africa, so not a problem. We’ve seen goat’s milk have considerable sensitivity, even beyond cow’s milk after specific testing.
As a result of measuring these issues for years now, I have come to the conclusion that I am almost completely against bothering with an elimination diet, as it just doesn’t adequately cover the details, and do become quite wild when physicians diminish evidence in the context of knowing nothing about it. Come on doc, give me a break! I won’t speculate about what you do if you don’t speculate about what the laboratory has reported and you just don’t get it.
Go to the services page, email Sarah there and we can get you set up with testing and a consult, no problem. We do Skype, FaceTime, iChat or just phone depending on your computer relationships!
cp
Hi.I’m a 25-year-old woman living in the UK. I’ve been diagnosed with (mild) Asperger’s syndrome. When I was 14 I started experiencing a whole host of symptoms, both physical and psychological: depression (at the time, very severe), constant headache, visual distortions (‘visual stress’/ scotopic sensitivity syndrome), nausia on an almost daily basis and especially after dinner, which was usuall pasta with tomato sauce (I would feel feverish, slightly constricted around my throat and sick for about half an hour shortly after dinner). I have always had problems with insomnia and things such as hypersensitivity to touch/ sound. I have also had problems with hyperactivity after consuming food colourings.
I tried eliminating gluten for a while and it seemed to help but then I tried it again and experienced no immediate bad effects so reintroduced it. I wasn’t sure if the cause could have been either the onset of menstruation or a stressful house move, both of which also happened when I was 14. I have been to the doctor over and over to talk about stomach problems (nausia, loose stools, etc.) and the constant headache, tiredness (no matter how much or how little I sleep I never feel rested) and depression/ anxiety. The ‘fever’ after eating went away after the gluten elimination I tried as a teenager. A couple of times, including at about 15, I requested allergy tests. The doctor responded that the physical symptoms were probably ‘all the same thing’ as my depression, i.e. it was me being neurotic, and I have always been refused any kind of test. The best a doctor suggested was to cut out basically every food type and then reintroduce them one by one over a matter of months. There’s no way I could stick to that.
I have decided to have another go at an elimination diet. I am using an enzyme supplement with every meal, even though I mostly cook from scratch and so know what is going into my meals. Do I still need to cut out gluten and casein 100% if I am using the enzymes? The ones I have contain DPP IV (I, II, III, IV, V), amylase, lipase (I, II), phytase, lactase (I, II), cellulase (I, II) and sucrase. I’m not quite sure what all of these are or which sensitivities they would help with except that I read that DPP was important.
I would really like to be tested for sensitivities. I seem to get an upset stomach if I eat more than about 3 portions of fruit and veg in a day so I suspect there may be other problems on top of the probably gluten problem and possible dairy sensitivity. Apparently I was allergic to strawberries and tomatoes as a child and kiwi fruit and oranges cause a stinging feeling around my mouth if I eat them. Can you send out tests to the UK? Or can you recommend somewhere in the UK that would be able to provide the service without having to go to my GP? Would I have to come off of the enzymes in order to get accurate results? I have read that goats’ milk mostly contains different casein to cows’ milk. Are there tests that could check my sensitivity to these proteins separately? I really like goats’ milk and cheese and it would be a big help if I could keep consuming these if I do turn out to be sensitive to cows’ milk.
Thanks,
Dani.
[…] “The peptides from gluten [gliadorphin] and casein [casomorphin] are important because the react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine.“—Dr. Charles Parker […]
If a person who does NOT have Celiac’s disease, gluten sensitivity, or a wheat allergy goes on a gluten-free diet, is it possible for him to still experience symptoms of gluten withdrawal?
Guest,
Sorry to be so late with this answer, but … yes! So many are faced with Gluten issues in the media, but so many are missing very significant additional associated allergies that ride in along with wheat and gluten – as this post documents – most especially casein, milk and a wide variety of milk products, and eggs. Those three, eggs, wheat and milk I call the New Jersey Trifecta – and these guys are one of the reasons I simply don’t waste time with an elimination diet – there are often too many to eliminate without clear target knowledge.
cp
I would just like to say that the people who compare getting off bread to getting off dope have probably never done heroin. It’s absurd to me that someone would even suggest that they’re similar. I was gluten free for a while, and had no problem getting off wheat. I have been battling with opiate addiction for nearly ten years. The notion that they are in anyway similar is insulting. You don’t feel like you’re gonna die if you don’t eat wheat for a day. You don’t wish you were dead if you don’t eat a piece of bread in two days. What the hell are we talking about here? When’s the last time you got high from eating a baguette? It doesn’t happen. I have to take a very potent, doctor prescribed, opioid every day in order to maintain my normal life. Maybe I should just switch to snorting bread crumbs, eh?
Mr A,
Sorry to be disrespectful, certainly not intended having seen many go off H over the years. I do apologize – the comparison may be inadequate in dimension, but clearly is adequate in the sense that some simply can’t cope, can’t live without, and have significant withdrawal from gluten and casein products. They aren’t Heroin, but they are addictive.
cp
[…] Withdrawal after stopping wheat or milk products can be painful, exhausting, and depressing, with weakness, anger and brain fog as subsequent downstream effects that can drive the uninformed back to their comfort foods. -CorePsych […]
Jenny,
Casein and Gluten withdrawal can be significantly improved by actually working to heal the gut with specific substances – probiotics and other supplements.
Often the other downstream effects of the gut corruption is the significant imbalancing of the neurotransmitters, which can also be specifically addressed through testing.
cp
Hi,
I gave up cigarettes and alcohol in the last year and in doing so massively increased my consumption of milk. In trying to eradicate milk recently I have had the most awful withdrawal symptoms. A bit of searching on the net revealed the opiate effect of digesting casein which makes absolute sense to me with the type of withdrawal symptoms I have had- depression, anxiety, disorientation- basically feeling like crawling up the walls.
I have tried twice cold turkey but got to about 5-6 days and couldn’t bear it. This time I cut down by half (substituting half soy milk with other milk) but am once again on day 6 feeling awful. Figure I just have to go with it.
It’s hard to get anyone – including my doctor- to believe what I am going through and why.
Ashley,
So often with immune conditions the kids have more than one or two problems. You can be well informed and quite on target with milk and wheat, but miss something like eggs. Those three are what I can the Trifecta in my office, and strongly recommend testing for failed simple elimination trials. Why waste time and continue to shoot at vapors when better target recognition is available?
We can consult long distance and send you IgG test kits, and, the good news: Tricare pays for the testing. If you would like a more careful look we would be happy to see your guy in our office just south – down there in Va Beach – see the services page for connections.
cp
Dr. Parker,
I’m feeling very lost. My son is 7 and has Autism, he doesn’t communicate very well and is very hyper. The GFCF diet had crossed my mind many times before now, but we were always in small towns with the military and now that we are in DC I thought it was time to try it. We’ve been GF for almost 3 weeks now and CF with a few slip ups for the same. My poor child is beside himself, he isn’t sleeping, is either laughing hysterically, or sobbing. I’ve started him and my girls on probiotics and vitamin regimen (the whole house went GF/CF). Is there anything I can do to help him through this horrible withdrawal experience? Anything like natural supplements or herbal teas that might take the edge off? I’m sure my neighbors think I’m abusing the poor thing. Also our mil doc doesn’t seem to think there is anything to the Autism GFCF thing so testing has been a no go.
Ashley
[…] Read More… […]
Kit,
My take on your situation, confirmed in a recent book on immune issues and thyroid: “Why do I still have thyroid symptoms – when my lab tests are normal” by Kharrazian [http://bit.ly/h1LjgG] – is that you had the thyroid issues all along, but only belatedly experienced the overt symptoms after many years of dealing with the gluten issues.
Further I would strongly rec that you have a full IgG workup as you could easily have had challenges with the withdrawal because you suffered from additional other food sensitivities not yet recognized: specifically casein/milk. If you chase down those other results it will contribute to your recovery… there is a move afoot to contribute everything to gluten, and it just doesn’t work that way.
cp
When I was diagnosed with celiac disease in 2002, I felt so badly that I could barely wait for the follow-up endoscopy to confirm the positive tTG test. The doc took the biopsied, but said he could tell by the way the light shined inside my small intestine that my villi were flat. That was the last time a speck of gluten entered my mouth. The previous 13 years I had been so ill that I was unable to function most days and spent a great deal of time miserable in bed.
I was one of those people who would have a slice of bread to stave off hunger and be fine for hours. However, the years of 10 times a day of diarrhea, muscle spasms and cognitive dysfunction was so bad that I would have given up food altogether in order to feel better.
Two days off gluten and I was a wreck. I was shaky, I felt like I was starving to death (unfamiliar with what goods I could eat, I stuck to fresh fruits and veggies and sauteed chicken breasts. I never felt full, I would panic if I had to go shopping for a couple of hours so I made a point of carrying sliced cheese or gluten-free candy bars with me at all times. I realized that my feelings were irrational, but I was terrified of being caught out of my kitchen without food available. Driving by Wendy’s and Taco Bell made me feel extremely anxious and deprived. After about three weeks I calmed down and was able to leave the house without even thinking about where my next meal was coming from, and my diarrhea had completely stopped. Very shortly afterward I began exhibiting symptoms of hyperthyroidism but wasn’t diagnosed with Graves’ disease for another six months because of a very stubborn and distrustful family doctor who couldn’t believe I could have two “rare” diseases in one year.
I’ve heard of escalated thyroid disease or the appearance of another autoimmune disease from so many patients who had just been diagnosed with celiac disease, that I have to wonder whether that difficult withdrawal didn’t contribute to the the over-activated immune system. I’m now writing an article for the Journal of Gluten Sensitivity’s Summer Issue to explore this question. Maybe it is healthier to wean off the opioids in gluten more slowly in order to prevent such a harsh withdrawal?
[…] Celiac Notes: Opiate Withdrawal from Gluten and Casein?I was diagnosed with the eosiniphilic gastroentoritis when I was 13-14, I had mast cell involvement? too. The GI doc said that it was food allergy related. This was odd, because I am only known to be allergic to mold, cephalosporins, horses and cats (after allergy testing). […]
We found out last week that I am allergic to gluten/wheat, the whole casein family, eggs, Brewer’s yeast and Baker’s yeast. I am having trouble understanding the yeast issue. I was told the package would actually say “Baker’s yeast” or “Brewer’s yeast” on it; although, I have never seen that. There is some sort of yeast in so many things: vinegar, barbecue sauce, vitamins, covered fruits, tea, etc. I am not sure exactly what to stay away from here. On top of all the other allergies, I am hoping that I can have barbecue sauce on my chicken. :/
Kelly,
Best to stay with the yeasts that are on the dramatically abundant side, then later worry about the details as you plug along. Beer for brewer’s, risen bread for baker’s- flat breads would be out because of the gluten, the other subsets you mention I wouldn’t worry about at the point of just getting started… worries will come if you don’t turn around as expected – then you will have to read the labels more carefully.
Allergic reactions are often related to volume of antigen, but not always – as we have seen from IgE with peanuts.
cp
I have been gluten-free for over a year, withthe exception of accidental contamination. At first I was tired, anxious and irritable, however I was also on the elimination diet (a diet that one can use to help determine allergies or intolerances, by eliminationg reactionary foods) so it would be reasonable to assume I would be experiencing these conditions regardless. When I re-introduced gluten into my diet, I reacted immediately with bloating, congestion, headaches and stiff joints. I have Rheumatiod Arthritis and it became clear after consumption, that gluten is a factor in my inflammation. I was later diagnosed with Celiacs disease, which is linked to several autoimmune disorders, including RA.
The reason I am posting this is to inform your readers that all my life I felt lethargic, listless and unable to concentrate on anything for long periods of time. I thought I was just inherently lazy. The idea that I was worthless and lazy, drove me to depression. I felt utterly useless in society. I never felt “bad” I just never felt good. It wasn’t until I woke up one morning, unable to move. I soon found out I had RA, and shortly after that I became focused on my diet. I was beginning to eat mor ewhole foods, and less processed foods. I felt more energy, however I was still dragging my feet. Then, one day I broke out in hives, and continued to break out every time I ate, until finally I went into Analphylatic shock. This is when I went on the Elimination diet., and eventually discovered that without gluten, I was a completely different person! I am now very active, full of energy and my mind is healthier than it’s ever been! I was drinking heavily, as many often do to quell both depression and physical pain. Although I still imbibe in a glass or two of wine, I no longer use it as a medication because I for once can say that I FEEL GOOD. In retrospect, it seems very evident that there is a correlation between gluten and an opiate simulus in the brain. I believe that gluten was inhibiting my own seritonin production, thus the feeling of listlessness. I am evidence that gluten can be detrimental to the health of many. I suggest everyone try it at least for 2 weeks, so they can experience what it truly is like to live gluten free, beyond the withdrawal symptoms.
Dr. Parker,
I have struggled all my life with food issues and have autoimmune thyroid disorder. About 8 years ago I realized I had a gluten allergy. When I removed Gluten from my diet I experienced a 3 day euphoria. It was only about 1 year ago that I realized that I was allergic to Casein too and went through a month withdrawal period. It was very bizarre to say the least. The whole 8 years I thought I was getting contaminates of gluten in my system. The removal of Casein has really helped. My main concern today is that I have been under enormous amounts of financial and emotional stress and believe that I am experiencing a nervous breakdown. If I could find a job, I believe I could pull myself out of it, but I have been unsuccessful. I can’t eat, sleep, function. I have made an appointment with my general DR. to discuss, but am scared to death to take any form of medication.
Any comment with regard to my situation would be greatly appreciated!
PS: Also would like to add that I have Multiple Chemical Sensitivity with sever reactions specifically to Solvents. Oil based paint, especially paint thinner, Acetone, spray adhesives, contact cements.
Melissa,
Your last line is the most serious of your comments. When you have MCS [Multiple Chemical Sensitivity] your situation is inevitably further compromised and needs even more vigorous attention. I would hasten to get your IgG antibodies evaluated [many labs and even your LabCorp locally – Test #680230 can get this done thru your doc].
Your responses and concerns show that your problem involves taking out any other offending antigens after that IgG measurement, gut healing, taking a serious dose of probiotics [see these for example] and perhaps even a more focused liver detox. When economics are short as they appear to be the best is keep reading, eat only organic, keep those bowels going as you likely have suffered a protracted transit time for years.
cp
Hello, I am unable to find the “LabCorp #680230 96 IgG Food Sensitivities” test that you referenced in a post above. I am wanting to have a food sensativities test because I believe I may have many sensativities. Going to the LabCorp website I cannot find that particular test…perhaps not offered anymore? Where/who should I have this done by…just want to be sure I’m using a reputable company. Thank you!
Nathan,
They still have it, I order it several times a week. Just call the company, tho they don’t answer the phone well. In the meantime we have IgG testing available at our shop which we can send out, no charge for the lab test [but your insurance may not support it], just drop a note to Sarah on our About page. One of our tests for 22 of the most likely foods is only 49$ paid to the NeuroScience if your insurance doesn’t pick it up.
cp
Dear Dr. Parker
I have suffered from multiple sensitivity for years and about 24 years ago ended up with eczema covering every part of my body. I am casein free and have at varying times had to eliminate almost everything in pursuit of mental and physiological sanity. I am significantly better these days and the eczema is largely under control, although this involves washing with no detergents at all and eating a very limited diet. I also suffer from obsessive anxiety disorder (clinically diagnosed) and find that a significant number of foods and also supplements leave me feeling depressed and raise the anxiety (especially caffeine). As both eczem/asthma and mental issues are prevalent in my family I have decided to try eliminating gluten, because it is the only substance I have never attempted to try weaning off. I am also convinced that there is a common root to many of the illnesses in my family and am undertaking this as much for my loved one’s as for myself. I have been tested for CD but came up negative, but I understand that gluten sensitivity can manifest in other forms. I am one week in and I haven’t had many noticeable side-effects/withdrawal symptoms, but I have found myself urinating much more frequently and experiencing sudden flu-like bouts of streaming nose and aching limbs. I am hoping that, if gluten is a root cause of my condition, then many of the food reactions may over time, subside and hopefully also, the extreme skin sensitivity, abate.
P.S. I was interested to read whilst browsing that Michael J. Fox experienced a significant alleviation of his Parkinson’s symptoms whilst visiting a country where wheat products are rarely consumed; clearly there are those who iwll make a connection between gluten and Parkinson’s. Do you have any experience of such a connection? I ask because my father sufferes from Parkinson’s disease and has done so for 26 years. I can’t help speculating on the probability that there is some common root cause which may offer my family a glimmer of hope in respect of the significant number of illnesses they experience. Could gluten be the key? I would value your insights and comments.
Many thanks
Dominic
Dominic,
Gluten and Parkinson’s makes sense, but don’t have any refs on it… and the symptoms you describe could be a manifestation of some withdrawal.
The very biggest part of the system, after removing the antigen, is repair and replacement – healing the bowel so the gut no longer leaks. I have several recommendations but the best is the GI Repair a 3 mo program you can review here.
Best,
cp
I started a gluten, egg & soy free diet in early April after being diagnosed with gluten, soy and eggs sensitivity by a saliva test by my doctor. In June (I think it was, I am kind of foggy) I started to become weak, shaky, anxious, light headed and dizzy. It was kind of like I was eating (although I didn’t have much appetite) but my body was unable to use the food I was giving it. I have felt really terrible almost ever since. It has bee a huge effort to talk and communicate well. For a few days last week I seemed to be getting just a little stronger each day and then it got worse again. I have been desparate to figure out what is wrong with me. I can barely function. It has been almost too much effort just to take a shower.
this week I have been to 5 different doctors including the one who diagnosed me. I had a blood work-up (normal except for a slightly high white count & calcium), urine tests, EKG (normal), chest X-ray (I was short of breath one night), fasting blood sugar (no results yet), thyroid tests (no results yet). Didn’t find any infection yet. Finally, late this morning, after going to my family doctor for the 2nd time this week, I have felt noticeably better for more than an hour or two. I am afraid to believe that I have turned the corner. This has been so distressing. Does this sound like withdrawal?
Julia,
Biggest problem with going off these foods – the challenge that amplifies the withdrawal – is the fact that you have to get the good in often even before you take the bad out. With multiple allergies you are likely suffering from a significant gut deterioration and subsequent malabsorption syndrome. These issues can all be measured and should be measured to correct them rather than simply toughing it out.
cp
Well, the malabsorbtion issues were not measured or corrected. I am not sure my doctor is even sure withdrawal is what is causing all of my problems although she told me that some people suffer from it.
Today, after several weeks, I am finally feeling a little better, although still weak, not so shaky, foggy, depressed, anxious, etc. I will certainly tell my doctor what you have said. She is also gluten sensitive so she has some understanding. She is a gynocologist who gave up the OB part of her practice to focus on hormone issues. My family doc said yesterday that maybe i should go back on gluten if removing it is making me so sick. My husband feels the same way. I feel like I am in this almost alone. I am afraid to go back on gluten from what little I have read about gluten challenges and I certainly don’t want to go through this withdrawal again if I need to be off gluten. Dr. Haendiges (the gyno) said that the egg and soy sensitivity is due to the fact that my gut is compromised from the gluten and when I get it healed i may be able to eat them again.
I read your bio, Dr. Parker, and wanted to say that I have visited your alma mater, Culver Military Academy, and my step-father was also a graduate. Small world isn’t it. Thanks so much for your input while I am feeling so desperate for answers and relief.
Julia
Julia,
Yes, Culver was a great experience, just back from the 50th reunion… we’ve all aged a bit, some are gone, but those folks that came back are sharper than ever!
cp
Julia,
This answer is more complicated and requires insights on several levels:
1. IgG testing will reveal additional allergens rather than speculating – e.g. LabCorp #680230 for 96 Food Sensitivities – removing other allergens will speed the healing process.
2. Going back on Gluten is not recommended as the best thing is to heal the gut. Your likely problem: no probiotics and no gut healing program. I strongly recommend NeuroScience’s NEI Gut repair kit found at this NeuroScience Link.
3. Other supplements often help if you are fully detoxed – often the liver is compromised over time and simply can’t rid the body of the toxins.
cp
I was so glad when I found this article back in January when I went on a gluten-free diet. My mom had been diagnosed with celiac disease 36 years ago, but since I didn’t have the typical gastro-intestinal problems I have always been diagnosed as “something Western medicine will never understand.” My mom encouraged me to try being gluten free wondering if my strange medical issues related to gluten intolerance. Within 2 days of starting the diet, I was having the exact, full blown withdraw symptoms described. I couldn’t figure out what was wrong with me and my friends all said I was acting like I was having withdrawals. Only thing I had quit was gluten, so I googled gluten withdraw and found your article. It made a lot more sense. The withdrawal symptoms subsided after about a week and a half.
Now, though, when I have gluten, it’s like I become highly intoxicated with my mind spinning and my heart racing. Then when that wears off, I crash and am very drained and tired. It’s only happened 4 times since I’ve only mistakenly eaten gluten 4 times in the last 6 months, but is this a situation you have heard of before and what can I do when I have had gluten that can minimize the horrible effects? At this point I could get a DUI from eating a doughnut, and I would have no energy and have a hard time staying awake for about 3 days afterwards.
Also, where can I find doctors who understand this side of gluten intolerance or who can help me understand it better?
Rebecca,
Big question on where are the docs. Just did an article with a writer from Living Without, a magazine for those with gluten issues, and a senior GI person from Chicago who disagreed with the very premise of withdrawal[?]. You might try this link as well.
cp
I am a 54 year old female who is in my second week of being vigilant about no gluten or casein. The first week, my stomach felt like I had run a fork through it, and now that this effect has subsided, I am incredibly dizzy most of the time. It is worse in the morning, I suspect because I have been lying down for hours, and then seems to get better during the day. The other night, at about 2AM, I thought my husband would have to take me to the hospital, as I had a full blown anxiety attack, shaking, wanting to jump out of my skin. It lasted for only 10 minutes but was frightening. The next day I was better but still woozy. And here I am.
I went through this whole dizzy thing about 7 years ago when I became ill with a stomach thing and ate very little for a couple weeks. I didn’t know it then (I was diagnosed with the mystery illness vertigo) but I suspect now that I was inadvertently beginning gluten and/or casein withdrawal then, however when I started adding gluten and casein back into my diet, the withdrawal stopped – although I didn’t feel better for months. That episode left with me brain fog, fatique, ringing in the ears, bloat, etc. Now I also think that the vertigo itself was caused by some sort of gluten/casein overload I may have had at the time. I have always been a big craver of both. (no surprise now).
Here is why I made the decision to go gluten free at this point. You see, as a child I didn’t speak until I was four years old. Up until that time I pointed and grunted, and constantly walked on my tip toes. My motor skills were fine and I had developed correctly in other ways, but the doctors 50 years ago were stumped. Finally, at four I began to speak in complete sentences (overnight), however I remained withdrawn and “shy”, developing a duodenal “ulcer” in the fifth grade, supposedly a result of my “shyness” and a possible ?parasite?.
Anyway, here I am, at 54, and just now linking some of the old symptoms to what people are now accepting as related to gluten and casein. So, I made the choice to remove both of these from my diet. Now, I am dizzy and woozy and I must admit, a little scared. I know it is too much coincidence that the same dizziness I felt 7 years ago has returned out of the blue, and is not linked to the omission of these two substances from my diet. Still I have an appointment next week with my family doctor who is very nice but I have a feeling, quite ignorant to the hazards of gluten/casein, much less the “ridiculous” notion that after 54 years of ingesting both, I may be experiencing a withdrawal effect. I have read that the dizziness subsides after a number of weeks, and that’s the only thing that keeps me on course.
Here’s my question: Will accidentally ingesting gluten or casein always give me a severe dizziness reaction? Or is it just the detoxification segment that is making me dizzy? I ingested G & C for many years and definitely felt a brain fog in the last 7 years, but not this debilitating dizziness.
Also, is there a specific type of doctor that may be well-versed in gluten/casein avoidance and withdrawal?
Thanks so much.
Karla,
Very interesting story, though typical if one is looking for these symptoms. You might have some problems ingesting these guys down the road, but only if you just hit them hard as in a full meal of pasta, for example. Admittedly some are more sensitive and can’t have a touch of the allergens, but only time will tell. My best advice: several supplements will help your bowel regrow and heal. Sometimes that healing takes 1 year… and during that recovery the challenges with sensitivity diminish.
Start by reading books such as the several listed here at my Brain and Immunity aisle at CorePsych Books. Supplements do help and many supplements are designed for exactly that undertaking.
If you need more help I can give you a hand long distance – just connect with my Patient Care Coordinator here.
cp
My son has been on a casien free diet for about a week. Panic has set in. He has been diagnosed with adhd. His doctor told us to slow down after experiencing a major panic/rage attack on day three. He’s got insomnia now and feels like he’s got the flu at times. It comes and goes. I feel terrible for him and exausted for us. His doctor said to stop the amio acid and whey protein drink (casein free) for now. He said that if his behavior doesn’t improve by this diet (behavior issues for years) he will then start him on ritilan. Then if still nothing changes in frustration tolerance etc depakote will be issued. I worry this means he is in trouble of developing bi-polar OR already has it and we are just in denial. The symptoms seem similar and I would say he has at least some questionable symptoms that do fit the diagnoses. He has ocd/anxiety and had an qeeg that said he would repsond strongly to stimulants and mood stabilizers however, NOT antidepressants. Does this mean he has bi-polar?? He doesn’t stay up all hours of the night – but he does have major anxiety and rages by throwing things, swearing over the word no. It’s not out of the blue, a limit set upon him sets these off. He does have disturbing thoughts that bother him that of sexual nature and if my shirt has a v-neck he can be fixated on it and visable bothers him to the point where I can’t talk to him because he’s to busy with that stress. After he rages he says he feels alone and doesn’t know how to act. Nervous. He says he does have nightmares about something getting everybody and then killing him, but then he wakes up. Is this bipolar? Does having to potentially take depakote mean that?
Hi,
Forgot to mention my son is nine years old!
Darla,
Even with all of these details it would be completely inappropriate for me to hazard a guess about his diagnosis… it is quite safe to speculate, however, that his regressions are biologically based, and have something to do with neurotransmitter imbalances south of immune dysfunction. My own take: I never just do a diet without first knowing what the immune dysregulation is caused by. Just had someone in the office yesterday with a 99 of 100 on garlic, and loved it – was eating garlic everyday!
My bottom line on all of this:
1. Test for specific immune dysregulations with LabCorp #680230 96 IgG Food Sensitivities.
2. Ritalin is absolutely not my first line product – Vyvanse is for ADHD.
3. Could be withdrawal, don’t know until I know what the problem is in the first place.
4. Don’t forget Intuniv for the ODD moods, I have many posts with many comments – this post with 194 comments on Intuniv.
cp
[…] not feeling the dreaded opiate withdrawal (yes, the proteins in milk and wheat mimic opiates such as heroin and […]
Hello,
Your article was very helpfull. (i was googling for withdrwal symptoms and i found relevant info here.) I am putting my 2 yr old kid on casein free diet and his withdrwal symptomps are terrible. He is cranky, frustrated, on hunger strike for last 3 days. If kid is showing sever withdrawal symptims, should i go easy on diet? (i did cold turkey). If he is not eating or drinking almond milk, is there anything that you suggest for nutrition?
Thanks.
mmv-mom
mmv,
With a 2 yr old you have significant problems, as they are *at that age* anyway. Do jump on products that are milk-like, and he may feel a bit better, such as Soy Milk, Goat’s Milk and many love almond milk. Then, best bet: hang on to your observations!
cp
In your experience, do people with gluten sensitivity almost always have problems with casein? I saw the reader with 3 year withdrawal symptoms. On average, what might you say a reasonable time range might be for the average withdrawal period? I know everyone is different, and that some end up with neurotransmitter and autoimmune issues, but would love some kind of target range to gauge withdrawal symptoms.
Susan,
In medicine we always stay away from ‘always!’ On testing either or both can be the problem, I anecdotally, after many testings, i see casein problems far more frequently than gluten. The degree of problem, the significance of the overt symptoms often determines the seriousness of the withdrawal.
cp
Dear Dr Parker, reading all your replies to other people has given me enormous strength and encouragement to keep going and have faith in myself. I have struggled with ill health for years, I have despaired at times of ever finding recovery and finally after xmas decided to go gluten free. It has been almost a week now and I know it is the best decision I have ever made, despite of the withdrawal symptoms (as described by others on your site) even down to the tingling in hands and feet. My ear also seems to be sort of unblocking or opening, and i think i’m in severe toxic city in relation to foggy head etc. anyway just want to thank you for the work you are doing. it is very significant to a lot of people. regards marie king
Marie,
Thanks back at you… do stay tuned here as I am currently researching more info on the gluten casein withdrawal, and may have yet another level of fix for it.
Best in your recovery!
cp
Dear Dr Charles, I am having a case of insomnia. After feeling much more relaxed than usual since being on gluten. I am shocked! The only three possibilities are: a) I have eaten gluten (but i don’t think so) b) I am having some weird withdrawal side effect or c) I have a sensitivity to mushrooms . . . any ideas? Burning in stomach, indigestion, feel totally wired and very thirsty (as though I’ve been major glutened but I don’t think so . . .
Confused. Can you help? Marie
Marie,
Sorry just too little info to speculate – remember this point: Gluten is quite often associated with other antigenic responses, and most frequently does not live on it’s own. All three are possibilities, only time will tell, and don’t become disheartened if your care with gluten is disappointed by a different intruder!
cp
Dear Dr Charles, thank you for your reply. It makes sense– I realized I had a yakult and have through elimination discovered a dairy intolerance -which explains a lot. Have been dairy free for about three days. I had glandular fever (some time in the past) and I’m wondering if there is any connection. I noticed after I first gave up gluten that something happened with my ear (I often have infections in the right one) and when I later stopped the dairy it has started to dramatically open/ dry up? become infected? even more- it seems a positive thing. I keep having the kind of feeling you get when someone hits you with a hammer on your knee to test reflexes-that sort of ‘tingling’ in all of my joints knees, elbows ankles hip and base of spine. Again it feels positive- well at least its not the usual pain. My glands are up and lumpy especially under right arm. All last night had hot prickles like I have the flu? Do you think there could be some connection to glandular fever. Some people on the internet have written that they cured glandular fever by going dairy free. What do you think?
Regards Marie
Marie-
For readers the term ‘glandular fever’ refers to mono. My take on any auto immune: Immune dysregulation will make the body vulnerable to a variety of new additional intruders, e.g. infectious, viral, or systemic, – as the repair that should be taking place daily in the body, is markedly deteriorated with the challenge of warding off the initial intruders e.g. gluten or casein. Yes, immune dysregulation often makes individuals prone to infections of many kinds.
Readers: A yakult is a Japanese probiotic milk-like product.
cp
Hallo Dr Parker,
I came across this website by accident – I keep on searching for as much information as possible about Coeliac disease. I can relate to some of the things that people have been saying. I am 61 years old and was diagnosed as coeliac in October 2006. Like others I felt quite good for a couple of weeks when excluding gluten from my diet but then came all sorts of weird feelings.
I have been VERY careful about what I eat and have only been ‘glutened’ a few times since going gluten free. However, even though it is a 3 years since the diagnosis I still have many problems.
Prior to the coeliac diagnosis, a diagnosis of Lupus (SLE), Sjogrens Disease, B12 deficiency, severe anaemia, panniculitis, mild pulmonary hypertension and then in May 2008, diabetes Type II (controlled with diet and exercise).
I have B12 injections every 3 or 4 weeks and if by chance I go a week or two over that time, things really go wrong – tingling in hands and feet, numbness in my thighs, brain fog, shocking anxiety and irritability.
I am starting to believe that some coeliacs never get better – could it be because a diagnosis has been made too late in life and too much damage has already been done. When we look at my family history, my maternal grandmother died from pernicious anaemia in 1941, my mother had similar problems to me but there was never any formal diagnosis for her.
Even after 3 years of been ‘gluten free’ I still have huge cravings for ‘proper’ bread. I had always eaten large amounts of bread and have said for years that I was ‘addicted’ to it.
Thank you
Dorne-
Two big problems apply to this conundrum:
1. Coeliac is easy, and apparently successful from your report, as you apparently had some withdrawal coming off = the ‘weird feelings?’ The problem: so many have more than one allergy, as the leaky gut symptoms frequently tune up the immune system to overreact to other substances. E.g. you may have beat gluten, but could very well still have a problem with brewer’s yeast, or milk/casein, or, as I found in one interesting presentation, garlic!
2. Even if gluten was the only problem many continue problems because they have not sufficiently healed the gut. This one, from your comments, is much more speculative as you appear to have progressed with nutritional support.
Never give up! Many more very excellent tests are available. I do think you are working with a #1 problem – and don’t forget the problem that can occur with baker’s yeast found in the ‘correct’ bread. All of these issues can be specifically measured by evolved testing, and we have this available in the office using Metametrix.
Also if interested in more learning about these issues I will be contributing to a Virtual Holistic Health teleconference coming in January, with many nationally known luminaries – you may want to check that out as well.
Do ask your doc to chase those answers down, you simply aren’t finished yet!
cp
Hi,
I have been Gluten free for a 1 and a half weeks now and think I’m having withdrawal symptoms. A year and a half ago I had glandular fever, since when I haven’t fully recovered, suffering from, insomnia, anxiety, extreme fatigue after lunch (normally bread based) and digestive disturbances (bloating, flatulence, loose stools, etc…). So last week I started taking a Betaine HCL supplement and went gluten free. Initially I felt much better but after a couple of days I started to get really tired and depressed and anxious! I then had a better day then a worse one and then a better one again. Today I’ve got really tired and was a bit anxious but generally better than yesterday. My flatulence and loose stools have completely gone since going gluten free though I still see a large amount of undigested bits in the stools. What I would like to know is your thoughts on my self diagnosis and whether these symptoms sound ‘normal’. I’m hopeful that they will continue to clear up in the week to come. I’ve been taking many vitamins too and also am eating in excess of 8 fruit/veggies per day to speed it up.
Many Thanks,
Peter
Peter,
Sounds like you are doing well all around, and does sound like you might be experiencing gluten/opiate withdrawal. Also, well done on recognizing that you must ‘replace’ as much as ‘remove.’ Healing is a two step process with immune challenges.
The opiate sites will set the neurotransmitters off, as the immune system dysregulates a number of the neurotransmitters, both acutely with the discontinuation and over time with the overt depletion of amino acid precursors. If you don’t have neurotransmitters you will feel the pain.
Your recovery journey would be significantly supported and accelerated by precise measurement of exactly what you have on board, both excess and deficiency are possible – as stress over the years could have pushed up norepinephrine or epinephrine or your cortisol, DHEA levels. On the other hand you may have simply bottomed out on serotonin and the opiates would have kept you blissful, and somewhat up. Over time with adrenal fatigue the neurotransmitters uniformly bottom out as does the cortisol. Listen to this Adrenal Fatigue podcast over at CorePsych Podcast for any easy review. We have many in-the-dirt, refractory folks who come in, almost in wheelchairs, with cortisol levels thru the day completely flat across all levels. They simply can’t get out of bed and everyone is mad at them for being lazy.
And guess what, many suffer from gluten sensitivity.
Taking out the offending antigen has neurotransmitter, hormonal and direct cytokine consequences. The removal will help with the healing but very well may reveal the covered underlying imbalances.
I am including all the links in this note for you to see the multiple possible consequences, not forming a conclusion. A simple interview would direct the informed practitioner to the correct testing and then would guide your team to the easiest intervention strategy with the fastest turn around.
Easy supplements for the inflammation would be to add Omega 3 Fatty acids, and Probiotics may be helpful in restoring bowel integrity – they are available as a Missouri Turkey Shoot – scattershot intervention without precise parameters.
This note will give you some good reading – If I can help further just let me know.
cp
PS just turned this into a posting this AM as I thought it would be useful for our entire readership:
http://www.corepsychblog.com/2009/11/neurotransmitters-psychiatric-medications-the-turkey-shoot-revisited/
[…] I did not have that problem but some folks insist they go through withdrawl when they stop gluten. Celiac Notes: Opiate Withdrawal from Gluten and Casein? […]
Hi
I am a 28 year old female who suffered from a serious dairy allergy as a baby. On intake, I would go into shock and my heart would stop. My parents, however, weened me back onto milk a few years later when they realised it (seemingly) didn’t affect me any more. My problem is as follows;
For most of my life I suffered from frequent colds and flu which would always affect me worse than anyone else. Last year I became increasingly frustrated as they were interfering more and more with my work and personal life. Not only would they affect me for longer, but I would also have a very embarrassing, dry hacking cough for weeks afterwards which would stop me from leaving the house. I also suffered from dark circles under my eyes which would always be there, but some days would look better than others. At my wits end, and after recovering from a flu like illness only to get a cold straight afterwards, I decided to eliminate dairy from my diet. Two days later friends of mine were remarking on how much better my eyes looked- I also felt much better. Something told me to go a step further and try eliminating wheat which was extremely difficult as i have always been totally dependant (and addicted) on foods such as bread etc. By day three I was having horrible symptoms such as shakes, lack of concentration, feelings of dread, fatigue and so on. I was pretty sure they were withdrawal symptoms as I had been researching gluten intolerance on the net. About a week into the diet, I started to feel amazing. My eyes looked completely normal, and all of a sudden I felt like, what I perceived to be, a normal person feels; I could think straight, felt confident, could speak clearly and articulately etc etc. I was ecstatic- I realised that all my life I had felt like something wasn’t right but had found the answer. Then I was angry that for 28 years I hadn’t been able to function at full capacity. Anyway, my joy was short lived as a couple of weeks later my feeling of wellbeing ceased only to be replaced with brain fog, fatigue, mood swings, food cravings, ibs, heart palpitations, insomnia and mostly a horrible feeling of depression and anxiety. That was around three months ago, and I am still feeling pretty bad, although I must admit some days are better than others. Another strange thing is that my periods seem to have stopped without explanations (I have visited the doctor and everything pretty much is ruled out including my thyroid, and I must add – pregnancy). The GP’s I have spoken to have completely dismissed my change of diet as a potential cause of this, but I do know that they are often reluctant to consider what they deem as wack medicine. The question I must ask is, is it possible that I am still withdrawing from the wheat and would this explain my lack of periods? Also, is there any light at the end of the tunnel? I am so dissapointed that the feeling of good health I had was so short lived. Can I expect to feel like that again? JJH
Julie-
Interesting how the unexplainable seems so whacky, and then when the explanation becomes apparent the quick response: “I knew that.”
It does sound to me very much like you are having a rebound of immune dysfunction, and sounds like you may have some contribution on the estrogenic side of matters as well. Higher estrogen actually increases stickiness of immune receptors – many believe this is a reason why women have so many more autoimmune issues. If you have a doc there in the UK that can look at your hormone levels, someone familiar with bioidentical hormones, I would encourage you to look for correctable evidence there as part of your next inquiries.
Regarding your brain function: I have seen what you are reporting in one other person who had a similar reaction. They too had difficulties from childhood, and took months to completely recover. Please see the other comments on this post regarding additional easy intervention strategies that might prove supportive physiologically.
Remember: If you are healing from an immune dysfunction there are two steps:
1. Remove the antigen or antigens
2. Healing of the reactive tissues involved.
At our office on complex cases such as yours we suggest ELISA testing as found on the Useful References page – under Immune Testing there. The reason for going for that big one: multiple other antigenic reactions can coexist behind the obvious ones, and removing those antigens can prove effective. Search ELISA here at CorePsych Blog for other posts on some interesting outcomes.
Finally, as mentioned in comments on this post, is the ‘detox’ situation. Some of the issues appear to include detox as well as withdrawal, and anything you can do to support gut health will help the toxins on their way out down south. When bad bugs die [because they no longer get fed the high carbs] they create downstream toxic loads. Bad bugs like Candida often live in the swill of bad carbs and unhealthy gut flora.
Bottom line: Yes, you could still be withdrawing, but you might also suffer from some other complicating downstream effects of the initial/primary immune dysfunction.
Hope this helps,
cp
Hi there. I need some advice.
For years and years I’ve suffered from anxiety and depression, and it has gotten quite severe over the past few years. In addition, I started having other severe problems like rashes, was diagnosed with IBS (constipation), and have had other aches/pains that, at times, were pretty bad. I’ve seen a number of doctors, and it seems they all just either slapped the diagnosis of IBS on me, and chalked everything else up to my anxiety issues — oh, it’s all in her head. (On a side note, I had experienced something similar to this for years as I complained of major pain in my abdomen….again, the docs would run a few blood tests and tell me it was in my head. I finally went to a doc that was doubtful of me, thinking it PROBABLY was just in my head, but thought to put my mind at rest, he’d order a CT scan and MRI. Thank God for this man. Lo and behold, I had a ten pound mass the size of a football in me. Talk about being angry! Yep, that was just all in my head.)
Somewhat recently my aunt contacted me and told me that my cousins on my dad’s side were tested positive for celiacs. Finding out it was 95% genetic and with all my food sensitivities and allergies, I thought this could be a very viable answer to SO many of my problems. After losing so much patience and distrust in doctors, I decided to just start on a gluten-free diet on my own. I know many will scold me saying that you shouldn’t do this without the advisement of a doctor, but, like I said, I feel really stuck. The doctors I have seen, have blown me off, and also, because of my anxiety getting so severe, in many ways I’m housebound. Travelling farther to see a doctor or specialist who may actually listen to me is not much of an option for me, at least not right now.
Okay, so now that I’ve told you my background…..I’ve been gluten free now for just over a week, and I think I’m having some withdrawal symptoms. At first I just thought it could be my natural anxiety, but after about five good days in a row (really good!), I have had two HORRIFIC panic attacks, and today I woke up aching from head to toe, with occasional shooting pains in my joints and muscles. I feel so tired and have been sleeping a lot. Prior to this, I could barely sleep at all! Insomnia was an issue, and if I got maybe 2-3 hours of sleep a night, that was about it. So all this sleep is atypical of what I had been experiencing. I now realize that eliminating the gluten is part of the issue, and the other part is getting your vitamins (iron, etc.), and correcting/healing after the malabsorption. My question is, if I were to make an appointment with my doctor (I do think I could get my regular doctor to listen to me about this), for blood tests, would he be able to tell exactly what my body is lacking in the way of nutrients, etc? Can he tell from urine and stool samples? Should I just assume I need to add certain vitamins to my diet? Right now I take a one-a-day supplement, and I know that is NOT enough. It just can’t be. I guess after reading that those who are just eliminating gluten, but not doing enough to correct their deficiencies have prolonged “withdrawal,” and I want to do whatever I can to get on the right track.
Any advice you can give me would be much appreciated.
P.S. Even through the aches, fatigue, and panic attacks, I feel better and overall healthier since going gluten free, as cmpared to how I consistently felt for years. I just feel it, and even thru the withdrawals, have spurts of times when I feel more normal than I have in years and years. Whether I would be officially diagnosed as a celiac or having a severe gluten intolerance, I want to keep this up. I am determined.
Scout77 –
Sounds like you are right on track with your insights, as one often does begin to feel better in spite of the detox problem. Sounds like you are having a relative Herxheimer Reaction which could be associated with the death of bacteria, or as some have observed simply the passing of toxins from their storage in fat with the shift in metabolism.
I regret that I don’t have a specific recipe for you, but have worked with others based upon the specific symptoms and situation. Several companies including Perque.com have excellent bowel rehab supplements, probiotics can be helpful, B Vitamins and Omega 3 supplements can all be helpful, as can simple magnesium [chelated]. Perque also has a very comprehensive multivitamin which, if taken two per day, can rebuild and restore.
I do strongly advocate correcting the neurotransmitter issues that will be present, and using the biomarkers for neurotransmitter testing will be helpful, and can be reviewed at Useful References – Neurotransmitter Testing here.
Hope these are helpful-
cp
Jen I really do feel we have so much in common. I struggled with laxative abuse and anorexia for years… and I find it very diffucult to relate to people. I wonder if maybe the gluten and other food intolerances could be why I have struggled with food or “eating disorder” Wouldn’t it make sense? I mean, if you have problems with a bunch of foods and they cause you bad symptoms, wouldn’t that make you want to avoid them? Or purge them? I don’t know. Anyway, I would like to hear from you more, but I really don’t like talking in a forum. Would you email me? Maybemec@yahoo.com.
MaybeC and Jen
Thanks for weighing in on this tough subject with Jen in so much pain. Laxative abuse, anorexia, IBS often associated food intolerances always carry a significant associated ‘Mind Problem’ [from depression and ADHD symptoms to paranoia, -to staring, epileptiform spells, and delusional thinking] with relative malnutrition and deficiency of Neurotransmitter precursors. Specific, targeted amino acid measurements from urine can significantly demarcate the exact deficiency, and will likely improve the psychotic feelings if the urine shows positive findings. Check out these references under Neurotransmitter Testing [Especially: 1. Is an excellent slide show with audio, and 4. On the biomarker concept and measurement of neurotransmitters.]
cp
I have no attention span right now. i can’t watch TV or read; strangely my attention span is better on coke. Maybe not so strange it is a painkiller. I think I learned to imitate human behaviour; I mean I really had problems interacting with people I guess I still do but the thing was I started watching TV and imitating what they wore and their expressions but that makes sense as to why my human relationships felt a little fake like I cared about people but I didn’t love them until I tried thinking about them in terms of being animals because I was very very obsessed with animals as a child; I essentially wanted to be an animal actually I did think I was an animal. Uh but having to think in metaphors all the time is tiring sometimes I have no idea what people are trying to say they seem to put a lot of words together to convey a very basic concept or sometimes nothing at all. I never understood humour. We do a lot of pointless things that don’t seem to result in a quality of life and I guess if you take everything literally it gets confusing especially if you think in terms of good and evil and black and white good and the devil; umm I guess the lack of love I felt for humans resulted in me thinking it was a moral flaw rather than an odd quirk. I read a lot of fiction as a child, also took acting classes which made me so confused I started to think I was other people I could get lost in someone else so easily because I never felt quite entirelt human. So I decided to think of myself as an animal so I could love myself to outthink an eating disorder that I didn’t think I had because dogs eat grass to make themselves sick to feel better and if i was eating foods that made me feel sick then vomiting is not a moral flaw.
I just noticed the delusions started to run into each other; like dreams. I mean, they started to overlap but there was an actual storyline or I would think what that was out of a book or a movie who’s editing this cause it sucks there’s no continuity. It was like having three or four different characters to play at once; I wasn’t sure who was directing me. I guess dreams are metaphorical somewhat I mean they represent things. They are manifestations of your subconscious. So on some level they are logical if you read them like a book. Umm that’s why I wondered about autism and bipolar as well because don’t bipolar people try to “read” signs or give meaning to things that one generally wouldn’t. So literally they are thinking in figures of speech possibly. If an autistic person takes everything literally if they try to imitate normal and learn to act couldn’t it result in a borderline diagnosis if you think about it the patterns are illogical but if you have to stop repeating the same pattern and you learn to act emotions that would result in the emptiness. Autistics have self injury problems too….. Could it make sense that borderline is a smart autism spectrum coping mechanism…… I have gotten borderline diagnosed twice, the last doctor I met wants to diagnose me as bipolar. If I stayed delusional for 3 weeks straight they’d diagnose me as schizophrenic or rapid cycling bipolar; especially if when I start to have problems with self care ie eating bathing dressing. Maybe ok I haven’t read in a while so I might be a bit off. Dude so borderline. Mainly I seem to be reacting to food which seems to trigger the mood and relationship instability. It just disappears, oh are all mental disorders essentially individual biochemistry. Hmm ok. I am just scared they will want to drug me out of my mind.
So it’s me again. Have been experimenting adding and subtracting various foods from my diet and apparently seem to be sensitive to soy, sulfites(possibly), and tomatoes citrus as well as the gluten and casein. Which sucks. And apples so maybe phenol or polyphenols or whatever they are. But I really have to stop experimenting because these foods cause me to become delusional. Was wondering what diagnosis one would make out of that if one was to see a psych. Are schizophrenia autism and bipolar borderline more closely tied than thought(have no question mark key sorry). Aren’t a lot of pills manufactured with gluten and are delusions basically your subconscious being overly turned on. Could autistic people be delusional. The ones that don’t speak; how would one know. Delusions are like a dream state somewhat right. But yeah i really have to stop experimenting because that means I have to go through withdrawal all over again until it is done. I took 40 painkillers of the extra strength variety that say don’t exceed 3 a day and uhh I only weigh like 105 maybe 110 and i am delusional right now and had a sort of weak workout in the gym this morning but am apparently ok and mainly coherent. How does that work seriously who measures the level of tolerance a person has. Like in grams or. I read a quarter of eating disorder patients met the criteria for an autism spectrum disorder in a study. Could body image distortion be like an actual literal mild delusion hallucination type thing caused by food or chemical sensitivity. If u watch them they do really weird things with their food like overcondiment and line them up and eat them in order and are addicted to fake sweeteners. Basically they OCD everything. Does that mean all mental disorders are basically triggered by an addiction chain. Why do we create more categories rather than merging them. Doesn’t it make disorders harder to treat. I have to see a psych tomorrow; they are going to think I’m nuts if I tell them what I just told u guys. I’ve been delusional for pretty much three weeks. Got sectioned a couple weeks ago restraints and all. Was the least helpful experience of my life although obviously I asked for it eating and drinking things that made me sick. But uh they chained me to a bed basically didn’t feed me for three days other than a muffin and a few crackers which I shouldn’t have been eating anyways. My hair got all matted. Then they took me upstairs to a weird place with glass rooms where the staff pretty much was scared of everyone(I think) because they ignored us essentially. I saw a psych twice he spoke about three sentences to me.And made a diagnosis. My last psych wrote I had alcohol problems in my chart and I barely drink.Sometimes I think they have God complexes.They gave me drugs for three days then took me off them. I was still delusional but staying there another week would have been pretty useless and depressing. Anyways hopefully what I said made sense because i am still a little high on painkillers and hopefully will come out of it soon because I have been obsessed with parasites demonic possession and hearing multiple voices. Too much science experiment for me. I feel like an animal. Have a good day everyone.
Hi Jen, I don’t know if you’re reading this. I still get emails from this forum whenever someone posts, so I read your newest posts. I know how you feel! It is scary and horrible. BUT you can get through it! Hang in there. Sometimes it can help to have a friend or a family member around when things get tough, especially when you have to see doctors! do you have anyone like that? I know my friends have been a saving grace for me. I have been in the hospital too, it was bad at first, but then got easier. Maybe you just need to find the right hospital for you. Anyway, please let me know how you are doing, ok?
Hmm well feel kind of shitty right now. Don’t think taking 40 painkillers was such a brilliant idea. Heart’s beating a little slower than I’d like. Really don’t think a hospital is the answer. I just have to take care of myself and stop experimenting with food because I have been sick for way too long and I need to move on. oh my god i am in pain. umm no family and friends not so helpful; feel a little alone at the moment. Home is across the country actually. I moved to Toronto at the start of last year; from Edmonton originally.
Jen,
With a complex set of symptoms such as you describe it would be inappropriate for me to suggest any details for diagnosis or treatment. I do agree with MaybeC, you do need some offline support, this ‘forum’ is a search for connections, and it sounds like you need to share the details with your regular doc. If he/she doesn’t get it, work to find one who will.
Do remember this point: who you are is not your diagnosis. Diagnosis is a set of symptoms visible from the outside that deserves direct medical attention. I would agree with any doc that says you sound bipolar and/or borderline, as some of the symptoms you describe fall in to those categories. – But I certainly wouldn’t stop with those diagnoses as end points. You very well may have serious allergies of some time, inflammation, toxic reaction, drug interaction, and people can appear very psychotic with specific allergies – documented in a previous post here from Annals of Internal Medicine.
One point is highly likely: you do sound quite ‘toxic’ from a ‘visual hallucination’ perspective. The challenging set of ‘delusional’ scripts, with your ability to stand back from them, is reassuring – and would make me want to dig even more deeply to chase down the culprit.
I do agree with MaybeC, your acuity and deterioration takes this situation away from chatting on a blog, and I do strongly encourage you to get with your current doc and go over these details with him/her ASAP.
cp
Hi Dr. Parker.
I am gluten-intolerante (tested positive for the anti-bodies but negative for Celiac in biopsy about 7 years ago). I went on a GF diet for 4 years. Then I found gluten enzymes. They seemed to work well, no bloating or other gastro problems when consuming gluten. So I started eating a full glutenous diet (taking the enzymes with every meal). After two years; I re-tested and was negative for the gluten antibodies; proving to me that the enzymes work. Yippee!
However, I stopped taking the enzymes because they are sooooo expensive. Plus, with the great gluten-free products they make now, I couldn’t see the point in spending all of that extra money.
Because I could no longer afford the enzymes, I stopped eating gluten too, cold turkey. (I have had years of experience in knowing what has gluten and what does not so this was easy for me). At first I felt okay. Now, four weeks later, I am having heart palpitations, daily headaches, sleep disruptions, feelings of exhaustion and anxiety, episodes of anger and outbursts and crying for no reason(totally NOT like me). I dispise mean people and strive never to be one… lately I have been mean!
I would have expected these side-affects after the first week or two, but after 4 weeks? Could these be withdrawals solely from the gluten or withdrawals from the enzymes… or both??
Thank you for your time and consideration.
AL
Alley,
Without more careful review of your personal history and specifics I can tell you from my own practice that I have seen gluten issues last, post discontinuation for more than 6 mos – some say longer. The length of time with the withdrawal symptoms appears most profoundly in those who don’t work hard to rebuild bowel integrity with supplements, from D3 to Vit A, to C and glutathione, omega 3 FA, Mg, and probiotics etc.
Taking the allergen away is only 1/2 of the project, healing the bowel and replacing significant deficiencies is the other half.
cp
Thank you Dr.Parker, it does explain why I feel as though i’m slowly going mad. I hope these symptoms are short lived because these symptoms are really hard to deal with on a daily basis.
Micheal –
Do read the several comments here for nutritional support elements to assist with the withdrawal. You don’t have to do it alone-
cp
Hi Dr.Parker,
I was just wondering if you could help me with a question please. For the past two weeks I have been on a strict Gluten Free diet. I started this diet because I have just recently found out my daughter has celiac disease and I have had Crohn’s disease for the past four years that apparently biopsies taken from my bowels, under the microscope, resemble damage due to Crohn’s as well as Celiac, my Gastroenterologist has only just told me this NOW after 4 years after I told her about my daughters diagnoses, I have tested negative for the celiac antibodies however. For the past two weeks I have been feeling incredibly antzy, depressed, anxious and fatigued and my already bad insomnia has just become worse. Is this a good indication that I have a gluten problem? bearing in mind that I did have some of these symptoms to a much lesser degree before this diet, which was the reason I started this diet to start off with in the hope these symptoms would go away not get worse.
Thank you Dr for your time
Kind regards
Michael
Michael,
Your suspicion that you are to some extent experiencing the gluten/opiate withdrawal phenomenon is quite likely. Oftentimes gluten sensitivity evades the lab testing for the antibodies, leaving the patient with the disorder for years down the line. I would accept the ‘gold standard’ findings of the biopsy and remain strong on your elimination diet, and also look at milk/casein as it closely follows comorbidly in a high percentage of gluten sensitivity patients.
To assist with the withdrawal, which, sorry to tell you, I have seen for months, I strongly suggest several interventions:
1. Nutritional evaluation and supplements are imperative to heal the bowel, and supply micronutrients that are missing for years. These could include everything from Omega 3 fatty acids to B vitamins to probiotics – you will see.
2. I would definitely look at Neurotransmitter measurements as it would be simple to specifically support those missing: see Useful References under Neurotransmitters here on the CorePsych sidebar for more info.
3. The obvious: stay with the program, often the withdrawal is shorter, 3-4 weeks and with a healthy diet will come around.
Symptoms before the diet likely reflected the pathology and the malnutrition as well as the immune dysfunction. Worse before better is often the outcome with discovery of gluten/casein issues.
Finally, don’t despair if it doesn’t work. We have see many, some documented on these pages, that actually had other significant gut allergies from garlic to corn – and only when they were specifically identified could we address them and eliminate. You may need some more measurements, so just know that you can highly likely get it all corrected with a focused effort.
cp
Hi, found this site while researching celiac disease. I am a 26 year old woman who has had multiple emotional/mental health diagnoses (as a teen) that I have since been told 1. I grew out of or 2. that I was mistakenly diagnosed. Except for an LD (non-verbal LD), supposedly I am not “crazy” lol. During my middle teen years I suffered several weird medical problems. From eosiniphilic gastroentoritis to a pituitary microadenoma to a normal thryroid gland (but a non-detectable TSH) to cysts on my ovaries. I have scoliosis, diagnosed w/ PCOS, asthma, triethylamenoria sp? “fishy smell disorder,” graves disease (treated with radioactive iodine 7 years ago), and now hypothyroidism (taking synthroid), no periods, then periods AFTER a biopsy to see why I wasn’t having them, but now abnormal menstration due to the hypothyroid. I also have a circadian rythym disorder that is probably one of the worst things to deal with (insomnia). Also type 2 diabetes when I was 12 or 13, but resolved with weight loss and only after stopping the prednisone for my asthma (now I’m considered “insulin resistant.” I was on several psych meds until I finally just refused to take them (when I was 15, after a surgery for sleep apnea made it too difficult for me to eat, and I didn’t want to take pills). When had just stopped taking those psych meds, I went through a horrible withdrawal. I ended up being put in residential treatment for a year. I was told I would likely end up in a group home and never accomplish anything. But, after a few years of illness (this was when my graves disease first started to present as well) and a self-destructive pattern, I was talked into taking the radioactive iodine for the graves. At this time, I did not want to do that, but I had a near-fatal reaction to the anti-thyroid med. So I did it. Then I became hypo thyroid and that slowed me down to the point where I wasn’t able to be so rebellious and self-destructive (a good thing). By that time I was 20, and had (despite difficulties) been able to maintain my own apartment for 2 years, and live fairly independently. The hypothyroidism has been so difficult, and the remaining symptoms of the graves are a daily struggle for me. I need a lot of help from family and friends to get through the week. I am very fortunate to have them, and do not require help from any social workers, etc. I have also gone to college, community college at first (where my GPA is 3.9!) and just won a large scholarship to a prestigious school to obtain my bachelors. Because of the LD and associated right-brain dysfunction, I have a little trouble driving, so I have help from my family for that. But basically I am now completely independent and haven’t taken a psych med since I was 17 and tried paxil again.
I am giving all this information as a history on which to base an answer to my questions. I think I may have celiac disease. I was diagnosed with the eosiniphilic gastroentoritis when I was 13-14, I had mast cell involvement? too. The GI doc said that it was food allergy related. This was odd, because I am only known to be allergic to mold, cephalosporins, horses and cats (after allergy testing). The medicine (crom-something, I’m not sure the name) never worked though. Then when I was around 14 I had my first colonoscopy. It showed some abnormality. Then I also had another one as an older teen, and they removed benign polyps. As an adult I have had all kinds of bowl problems– from impactions, to acute diarhea to just severe bloat and abdominal pain. I have also had very green loose stools, and pain on my upper right side (which, I’ve been told is indicative of gallbladder problems, ugh). Last but not least I have extreme pain, achiness, fatigue and brain fog that make every day a challenge for me. Oh, and I have extremely soft teeth that seem to just break, chip and decay of their own free will, (which is very painful too). Upon reading an article yesterday about celiac disease, I am wondering if my continued struggle with myopathy that I attributed to lingering grave’s disease symptoms could be attributed to celiac disease, along with the tooth problems, abdominal, plus I have sores in the corner of my mouth, iron anemia (I’ve had that since I was a teen) and more symptoms. IS it possible that all of these problems I’ve had are interrelated? Because it seems to me that they are. Like I have some auto-immune or endocrine syndrome. I don’t know. I am going to ask my endocrine doc if she can test me for celiac disease. I don’t have a GP because none in my area accept medicaid right now (at least not ones that feel comfortable going to). But now I am terrified if I would have it. Especially considering this potential withdrawal from the gluten opioids or whatever. I have only ever responded well to opiate medication (not morphine or codien, but vicodin or perocet), and always reacted poorly to psych meds (anti-psychotics actually produce psychosis, anti-depressants produce mania or I can’t absorb them at all because of that fishy-odor triehylameno-whatever). So if I go gluten-free, am I going to lose it or what? I am so afraid of ending up crazy again, that it is pretty much driving me there, lol. What can I do to prevent any emotional problems that could arise from following a gluten free diet? I have achieved so much, and I don’t want another attempt to be or get well to cause me to lose what I’ve worked so hard for.
MaybeC –
I do hope readers work their way through your history, simply because it is so completely compelling – and, I must admit, so commonly missed. I’ve missed these multiple complaints for years – as the psych office is usually the end point for ‘we don’t know what to do – you do have a psych problem.’ I have sent folks like yourself out for second medical opinions, and finally recognized I had to learn as much about these various somatic problems as possible. Take your time and find the right provider who appreciates the likelihood of an immune disorder, need for direct intervention, and someone who can mix the psych meds with your vulnerable metabolic system.
Your bowel problems reverberate and are likely causal with your endocrine problems, and your psych problems as well. I wouldn’t wait for someone to make the diagnosis at this point, – you really must become proactive – hope you don’t think I’m shouting at you!
I noticed you were trying to do what many do – find the exact name for those multiple problems. But the reality, again without examining you, just armchair with no intent to treat, is that you have classic neuro/endocrine/immune problems such as we have been discussing on these pages at CorePsych Blog for some time. You have at least these 3 systemic problems, as you can likely appreciate, and, as an obviously intelligent young woman, you would do well to do some more homework on gluten and immune dysregulation.
Do also get cracking with your doc or any local doc/nutritionist professional who will help you with more specific diagnosis and treatment. Yes gluten and/or casein could be directly causal and I have a post about 1 year ago on schizophrenia resulting from celiac, found on SPECT! [- sorry pictures not there but you can click to see them on that page – from previous posts on TypePad].
I would absolutely jump on ruling out gluten sensitivity even if full blown ‘celiac’ didn’t come up on the GI radar. An ‘elimination diet’ would be strongly recommended and you really need to get with a professional wherever you are rather than simply take my advice. Google ‘elimination diet,’ get off the wheat and milk immediately until further evidence as you are significantly malnourished based likely upon having little or no bowel villi. You likely will feel a bit weird coming off gluten, and uncomfortable as you will see from comments and posts back on those subjects. The debate: Go slowly, or get off the gluten abruptly – my take you really need to be off entirely, but don’t want to completely ‘paralyze’ yourself if you become overwhelmed. I say paralyze because you can feel sicker for awhile.
The crazy reactions to psych meds: very typical, and a reason to consider neurotransmitter testing and slow supplementation just to come back somewhat into range. Suggest go back over to NeuroScience to see if they have a provider nearby. It sound like psych med choices are almost nil.
Please do jump on this asap,
cp
I plan on looking into the neurorelief website. It looks incredibly interesting. I just talked to my mom this morning (she is a med-tech, so she understands a lot more of the terminology than I do), and she said that when I was 12 or 13 there was a concern about some IgA antibody in my tests. So that is more indication I may have celiac, if not just a gluten sensitivity. In my case, I was going to 4 different clinics through out those years that I was being tested and diagnosed. The doctors weren’t in the same group or practice, and my med records were (as you can imagine) very large and had to be ordered from storage and wheeled on a cart to whatever office I happened to be at. So I can understand the doctors missing this stuff. The GI doc that diagnosed the eosiniphilic gastroenteroits was at a seperate hospital than the docs that did my colonoscopies, and they were both seperate from the clinic that did the testing that discovered the thryroid difficulities and the IgA antibody. So nobody had that complete picture. Before I go gluten free, I’ve decided to just get tested through that enterolab.com laboratory. It is cheaper than it would be for me to get it done through my doctor, and I can get it over with and not wait 6 months for an appt. Thank you so much for the reply. I don’t feel like a freak anymore after reading around here and neuro relief, lol.
Maybec,
You definitely have something going on with your immune system, likely gluten sensitivity, and being young may throw you and others into a denial about the issue. I look at it completely differently, you are way too sick to be so young with so many probs. Do read up, glad you are more on the path, and do keep us posted as your check out enterolab – year neurorelief would be a good thing!
cp
Was told my bowel issues were due to an eating disorder but recently gave up gluten and casein for a period of time and found that it made a huge difference. Entered eating disorder treatment numerous times where I was told my digestion would normalise as I reached a healthy weight if I waited long enough. But spans of 2 or 3 weeks without having one bowel movement were somewhat painful so I usually just gave up and started purging again. My doctor gave me diuretics and laxatives because I kept retaining more water and gaining weight on very low calories in part because of severe constipation. The laxatives helped a little for a bit then it got to the point where I had to go to the hospital and have 3 and a half bottles of Colyte because i couldn’t move anything for a month. Then I started looking on the internet and came across autism spectrum and this thing called stereotypic movement disorder which is when i decided to try the gluten free casein free thing. Because I seemed to exhibit some of the traits of a pervasive development disorder and I had a problem fidgeting with objects to the point where I would spend hours doing it; then i broke my arm and never regained a normal range of motion. And I tore my shoulder cartilage doing god knows what and my doctor is sending me to have a nerve test to see if i have carpal tunnel because i messed the arm up fidgeting with things and it goes numb and hurts to use the hand much. Falling off the wagon sucks though. I feel like I’ve spent my life in a lie and I’m trying to get out.
Jen,
Will do a post on this, as food allergies and immune dysfunction are commonly seen with a variety of levels of eating disorder [from no breakfast and ‘touchy stomach’ to full blown bulimia. We see these symptoms often several times/week in our office with eating disorders and ‘picky eaters’ – and the immune contribution is often overlooked.
Then, to make matters worse, associated as a relatively obvious consequence, malnutrition is frequently overlooked and almost never measured specifically!
Thanks for sharing this challenging problem, and do keep us posted on your progress.
cp
My boyfriend has not been diagnosed with celiac disease but I definitely think he has celiac disease and is addicted to bread. (looking at the definition of addiction as repeating a harmful behavior despite its negative consequences). I have tried to get him to stop eating gluten since it makes his stomach hurt horribly, and become bloated and hard almost like an inflated ball. If he hasn’t had gluten in a while he gets a headache and is very moody (so far, he hasn’t gone a full day without a little gluten). When he gets his gluten he has a sort of high where he is really goofy and silly and his pupils are dilated. Immediately following this high his mood swings down and this is when he is in the pain of the gluten and wishes he didn’t eat the bread or other gluten product. Also, I think this might be tied to his diagnosis of ADHD. He might need to actually get on a GFCF diet, but I haven’t had any luck of convincing him of this yet….
Gluten Intervention,
All the symptoms sound like gluten sensitivity, but a GI doc, depending on their experience in these matters, may dissuade you from the ‘celiac’ diagnosis as ‘celiac’ requires a much higher standard of pathology. Celiac is end stage gluten sensitivity.
Best to address the ‘gluten sensitivity’ first, and, yes, you need to stage a mini intervention. No, you won’t be telling him you will leave if he doesn’t get treatment, but you could give him some information, and a fun surprise [your call] if he participates in your game of ‘getting straight on the information available.’ Read the info, get the surprise….
I strongly recommend the following book to get started: Celiac Disease the Hidden Epidemic For the small price of this book he could soon have no problems, – and right next to that book are others that describe in detail how to make eating transitions.
If he wants testing: we recommend several labs: EnteroLab.com being the easiest for non-professionals to find and work with.
Hope this works, and have fun dreaming up your surprise!
cp
I have been off gluten for a week. At the start I had a bloated stomach and pains in my abdomen. I also noticed I was feeling irritable and have been snapping at people right left and center. The symptoms feel like they are starting to wear off now but I hold my hand up to this gluten/casein withdrawal hypothesis.
Looking forward to being symptom free of this opiate drug!
Glutened-
Yes, have seen the withdrawal last for several weeks and in one case several months.
Strongly recommend nutritional counseling to rebuild your gut, as micronutrients & supplements seem to abbreviate the duration of the withdrawal challenges.
cp
I noticed a comment “allergic to gluten”. I am not a doctor but I don’t know of any allergy to gluten.
Gluten causes the immune system to destroy the lining of the small bowel, resulting in mal absorption of nutrition from food.
This disease is known as Celiac. It is very serious. Far more serious than an allergy. Zero gluten can be consumed. Every trace of gluten causes damamge!
If you can not eat gluten without problems you are more probably Celiac than allergic. You can not eat any gluten. This is much harder than it sounds and beyond the scope of this post. It takes most of us years to learn all the possible sources of gluten.
Good luck.
Cheryl,
Sorry to be so late getting back… strongly recommend you read one of the gluten basic books at CorePsych Books, go over there to find the ‘aisle’ Gluten with many books at many different levels. Celiac is end stage gluten sensitivity – often gluten sensitivity is overlooked with significant problems, especially regarding what you talk about in your other post, brain fog and depression. Malnutrition and actual brain compromise can occur with untreated gluten sensitivity – it is really a big problem, frequently overlooked.
cp
My own brain fog, depression, and mood swings cleared up on the GF diet. I am a diagnosed Celiac.
I just continued to improve on the GF diet. If this addiction thing is true, then wouldn’t every Celiac have the same problems when starting the GF diet?
I find this research hard to take. If the medical profession accepts Celiac’s as “addictive personality types” we will no longer receive proper treatment for health problems but will be labeled “drug seeking” and written off.
Cheryl,
Please don’t take these comments the wrong way… I am very much with you on the problem of finding more inadequate labels to bat around… if someone mentions ‘addictive personality types’ to me I can easily step up on the soapbox for about 4 hrs non-stop. I hate labels and their counterproductive implications.
On the other hand, using words to identify a problem so that it won’t be so confusing for those folks who are suffering with these problems, and for the reason that they can look at other possible contributions to their immune system dysregulation… now we’re over in science land. Find it, fix it, leave it alone. Evidence provides targets for the fixing process. not the dismissive process.
tnx
cp
Beth,
Much to address, but bottom line first: there is hope. When you discover the other allergies, some may surprise you, the next step is physiologic healing with specific nutritional supplements tailor made for your precise deficiencies.
This is routine, out with the bad, in with the good, – often the good goes overlooked. The ELISA sounds like a must, then someone to do the CMP to discover exact problems with deficiencies and toxins – sounds like you’re carrying too much ammonia – and if phase II metabolism is slowly, but inexorably encouraged, then you can actually take any meds or supplements.
If your liver isn’t working right, everything can make you sick.
Discontinuation with any SSRI is ‘always’ a problem with allergic conditions and downstream liver inadequacy.
Hang in there, get the appropriate testing and get on a program, may take 6 mo, but you can get significantly better, have seen it happen many times.
Best for the Holidays in spite of all this,
cp
This is fascinating. Almost all in my immediate family have Celiacs Disease. I was administered the IGE and it was negative, but as was for a couple of my siblings and then they got the small intestine biopsy. I am currently trying to go off of nortriptyline, almost done, and the withdrawals are unbearable…tremors, diarrhea, among the emotional stuff. And I am doing extremely small dosage reductions. I have been on antidepressants for awhile, but really going from 1 mg to .5 mg should not be so hard. The only thing I can think reading this is that nortriptyline is bound with gluten. I have been on a gluten free diet for two years, but then I realized, not really. The strangest thing is in going off the nortriptyline I am finally GAINING weight…from a low of 93 lbs. in a very quick amount of time (could also be hypothyroidism). The other odd thing is that the other meds I am prescribed are benzos and for some reason I have much stronger interdose withdrawal trying to go off the nortriptyline and once I take the benzo it kind of subsides which I know is not just tolerance because it lines up perfectly with the nortriptyline drops. Must be the opiates. Holy cow! Going gluten free was very hard for me, as is going off the nortriptyline. Next is the small amount of benzos I’m on and I figure that is going to be holy hell, as the titrations have been. Much, much worse than for most people who’ve only been on them 10 months. I am so sensitive to meds my psychiatrist nor primary know what to do with me. Not to mention the malabsorption and pieces of food in my poo now. They want to put me on more psych. meds, and I am severely depressed, but in researching I’m realizing maybe that would just prolong the suffering. One of them is time released (my stomach goes blech!). Unfortunately, there’s not a great safe way to do benzo withdrawal once already so depressed and coming off antidepressants. Big immunity of mine also: corn, eggs, fish, dairy (benzos have lactose in them). I think this is how they make their meds addictive. I would love the ELISA panel, but know it doesn’t always catch everything (aka Celiacs) but I wonder sometimes about any other allergies I may be missing.
thanks for this interesting information.
peace-
Beth
Jackspar –
Thanks for the heads up – I do think we have to be careful about your words *guide treatment* – implying a categorically corrective solution.
One reason I send out these blog missives is that many parents with ASD [Autism Spectrum Disorder] children have seen *improvement* correcting gluten intake. This observation, yes *anecdotal,* regularly comes up at the Defeat Autism Now [DAN] meetings as significant and contributory, not necessarily categorically causal.
Authors such as J McCandless, MD –
http://astore.amazon.com/cpbks-20/detail/1883647134/002-4746117-5332848
who write about a multiplicity of contributory factors with ASD have regularly said that a gluten and casein free diet is an important element of any ASD recovery process.
Interesting: The contrast between the research and the lives of parents who see the changes with their children.
My own take: The research has not yet found a way to connect with all of the ASD variables – thus modifying the outcomes of any single trial/intervention.
cp
A gluten-free casein-free diet (or GFCF diet) eliminates intake of the naturally-occurring proteins gluten (found naturally in wheat, barley, and rye) and casein (found in milk). The Autism Research Institute and other advocacy groups recommend the diet as a treatment for autism and related disorders. Studies supporting these claims have had significant flaws, so the data are inadequate to guide treatment recommendations.
________
jackspar.
Wheat Freak – Renamed herein Wheat Sober,
Very interesting and comprehensive questions… you have certainly been doing your homework.
Main point in quick reply: you need more information. Not likely that it is gluten withdrawal for such an extended period of time – even though you are right on that you are still quite obviously allergic to gluten.
But this is another consideration… none of this immunity business is just that simple – *only* wheat.
My armchair shot at this history is that you have nailed the gluten, but missed something else. In this recent post I told you how I got it wrong in my conjecture about wheat with a 9 yo girl [buried in the Immune Paragraph after the Web announcement at this link] – her major and very significant problem: Corn –
http://www.corepsychblog.com/2008/07/connecting-on-k.html
Yes, gluten problems are very prevalent, but not the *only* immunity. With your abundant respiratory symptoms, I am certain that you have another antigen eating up your defense system… all you have to do is chase it down. Obviously there may be other factors, other causes, but from an immunity perspective, sounds quite compelling for another bug.
Take a look at this page under Immune Dysfunction Testing for more reading – read especially the Jaffe article there:
http://www.corepsychblog.com/neuroscience/useful-references/
We do testing in this office, can consult on this matter if you wish, or your medical team can order testing from them – here:
http://www.elisaact.com/nonhc/letter.asp
The results and follow up findings in our office have proven most interesting and significantly associated with improvement, often marked and quickly, – sometimes taking longer, depending on the extent of the chronic damage and nutritional state.
These are a few leads, – please keep us posted,
cp
I am interested in Hoggans comment re shortness of breath. I was extremely sick with gluten in my diet and it got worse as I got older. The fatigue, gastic disturbances and depression/anxiety were terrible. Off gluten I felt better for about three months until I developed scleroderma and severe shortness of breath which has taken about 4 years to resolve with no treatment but minerals, antibiotics, antifungals and pancreatic enzymes (because I had severe pancreatic insufficiency). My pancreas recovered along with the scleroderma but I have low grade infections constantly. Recently I ate a piece of cake I couldn’t resist (as I had not eaten wheat cake for years) and it knocked me out (fell asleep) for two days and I had steatorrhoea and headache. I am of normal intelligence but barely function mentaly for that period and muscles turn to jelly. I dont have a type 1 allergy and don’t know if I have celiacs-unlikely with dq7 0301 gene. Is it possible I have been dealing with a severe and prolonged withdrawal reaction to wheat? NB I have raised IGM and Low IGA and wonder if this lead to the wheat problem.
geokozmo –
Well done! Thanks for the support and encouragement for those who follow in your own footsteps… the whole thing with gluten and opiates seems so counterintuitive – it takes some real testimony to see how it can help.
Many thanks for your contribution to the remarkable dialog!
cp
Hi Dr. CP
just want to thank for the feedback back inend of April, begining of May.
I am astonished at the differences among people going glutenfree. I am always trying to tell people how good it can be…after years of suffering now I do not feel bad at last…And some report that yeah, it works for them and some simply cannot make this move…I am baffled by this. For me it seems so perfectly simple…and it is such a relief…and I see these young and old men and women around me, with autistic or schizoid or complusive disorders and (like me six ys ago) they say, no, no it is too tough…But the suffering (for me) was way worse. Now I consider many of my past failures (in family life and in career building) as due to this extra opiates from gluten. I could be angry but instead I am grateful. It is better to find this relief late (I am 49 plus) than never.
Bryan –
Many reports show a strong relationship between the two, as the carbs both feed the candida overgrowth, and the gluten in the carbs feeds the celiac.
Take a look at this easy review of comorbid conditions and diagnosis of celiac/gluten sensitivity:
http://www.diagnose-me.com/cond/C341265.html
Tnx
cp
Dr. Parker,
I was wondering if there is a connection between Candida and Gluten sensitivity? The withdrawal process sounds a lot like what a Doctor described to me years ago, that once the Candida start dying off that I would feel drunk and dizzy etc… but I also had to stop eating yeast, sugar and wheat etc… is Candidas and Gluten interlinked and one of the same?
Just wondering… thanks!
Bryan
I would also like to point out, that although Dr. Parker did not assume to diagnose me from my comments here, he pinpointed on aspects I DID NOT mention and went strickly from what I mentioned here alone. That goes to show one can’t avoid the truth, because the truth is what it is and you know someone knows his biz when he can tell the truth even when an individual is trying to avoid it…
Bryan et al,
Thanks so much for all of your positive comments, – after having *never trod* the gluten sensitivity path for many years in my own practice, gluten, casein and celiac are now firmly on my radar… thus the inevitable question:
How many times a day do you go number 2?
Not everyone has overt bowel issues, but many do, so it is important to *put that bowel on the table,* so to speak.
I have been discussing Enterolab in many of these posts, but do have a more comprehensive option for those who may wish to review: Take a look at this page, and do download the Jaffe article there under immune dysfunction. Jaffe is the master on the multiple considerations of immune dysfunction.
http://www.corepsychblog.com/neuroscience/useful-references/
And Bryan, do go over to this page and sort through these books, any here could firm you up in your next steps.
http://astore.amazon.com/cpbks-20/104-4113148-0403906?%5Fencoding=UTF8&node=30
Best to all of you persistent readers,- and, once again, thanks for all of your interest.
And, by the way, sign up email updates on CorePsychBlog postings because I will be offering an interesting new teleseminar on Brain, Bowel and Immune Dysfunction this fall.
cp
I have to agree with Cecily. I have been trying to find any other answer other than this, but alas, then years ago I did this diet and took injected pro-biotics to help my flora and yes, the symptoms I suffered from went somewhat away and then I was also treated for heavy metal poisoning and from that point my symptoms vanished. Since taking PZ my symptoms have returned and I have been looking for any answer but this one, because where I live the diet is too darn tough to deal with. This place is brotchen heaven for Pete’s sake! I forgot to mention to Dr. Parker that I also have IBS… Dr. Parker has been wonderful in taking the time to respond back to me and look forward to his continued advice. Wish I lived in VA!
Geo-
Yours is the most frequent kind of positive response. Many feel better almost immediately. Some with outstanding symptoms for years do take longer to turn around, for a variety of reasons.
I included these withdrawal comments here because some do have very difficult times coming off wheat and/or casein and can benefit from simply knowing what is going on.
Glad to hear yours is an easier outcome-
Thanks
cp
HI.
My experience with going gluten-free is the opposite. my previous depression and brain fog cleaned up and many of my compulsive cravings /that were quite disturbing and I needed even therapies for it/ diminished to a considerably more acceptable level.
Of course this might be the exception and others have different ways.
Geo
Belated thanks, JRB, on the Enterolab comment. Enterolab is linked under my Resources on this site [Bottom left of the front page] to make it an easy connection for readers, no affiliate status, just an easy link.
If you go to Enterolab, and are ambivalent, apprehensive about the gluten sensitivity diagnosis because, as many do, you just don’t want to make the necessary changes, do order for the most comprehensive test listed here. It will help you close the door on your maybe-nots.
http://www.enterolab.com/StaticPages/Frame_TestInfo.htm
With that information at 369$ you will have firm information on several layers of the pathology that can help you and family members with your HLA DQ2 – DQ8 genetic findings included.
I will send out a post on this soon with Dr Fine’s “Early Diagnosis” essay linked for everyone’s review.
Thanks for the Enterolab suggestion-
Chuck
EnteroLab (www.enterolab.com) tests for gluten, casein, soy, and yeast intolerances. They also will type your DNA, checking for gluten intolerance and celiac markers.
They are quite well known in the online celiac community; for more information, just Google!
What tests do you recommend for Gluten intolerance?
Hey team,
Just an update on an offline question about brain function, casein and opiate withdrawal at a new post over here:
http://www.corepsychblog.com/2007/09/brain-awareness.html
See you there!
Chuck
Here’s a bit more evidence for you. My son has a movement disorder* that has been controlled enough with PT that it takes a professional eye to spot it… at least until now. About 10 days into the GFCF diet, he started twitching all over the place, and still is. Makes sense when you figure that the way we treat movement disorders is with opiates – he’s been self-medicating with food. I can’t come up with any other reason why the change in diet would cause a clinically significant change in motor issues.
Of course, now we’re between a bit of a rock and a hard place, but we’ll come up with something.
Thanks for the welcome!
Abigail
*He’s the miracle boy – walks and talks despite total destruction of his basal ganglia (don’t think about that too hard; it’ll give you a headache, but we have the MRIs to prove it) and the movement disorder is residual.
Thanks, that would be great information to have. I will do my best to check back, but if you do find something, an email would be more than appreciated!
Abigail-
So true…the changes in psychiatry and brain science bring a new level of excitement/discovery to basic medical issues as they relate to emotions. So interesting, -and so useful in our clinical practices.
Be careful, you may find yourself like me waiting to ask the #2 question… and then will find yourself puzzled when they are so #2 regular but have some subtle symptom like GERD [esophageal reflux], and all the immune dysfunction anyway.
These are topics I will be covering with some upcoming cool interviews over at CorePsychPodcast so please stay tuned.
My quick, distant and non-specific arm chair thot about your son’s “hyperactivity:”
a. Yes, could be withdrawal, as the opiate receptors reconfigure.
b. Could also occur downstream of the bowel changes that occur with less inflammation…like a blush of better nutrition.
c. Could be diminished sedation from “opiate dependence” – I used to see this often when running an addiction unit – a paradoxical big energy. – Also found with benzo withdrawal and well documented in the book: “I’m Dancing as Fast as I Can.”
Thanks for your comments, really appreciate remarks from the psych-hood. So much of this seems at times so edgy, but, hey, the refs are there!
Any comments from others on this hyperactive phenomenon described by Abigail?
Thanks,
Chuck
Alisa,
Sorry I missed your casein posting/question on the comments with this missive, -somehow slipped by with the rush of family matters and big doings for the holiday.
Your question is very interesting, one that I don’t have an immediate link for, but I do recall some of the same symptoms for casein listed with refs on gluten withdrawal.
I will put your question on my to-do list and will post it when I have some good links.
Thanks,
Chuck
Interesting reading. I started my 13 yo son with Asperger’s syndrome and anoxic brain damage on a GFCF diet last week just as a trial. I decided to do it with him, mostly as support but out of curiosity as well since I have some autoimmune problems. The first two days were fine. Day three we both became agitated and irritable – felt like way too much caffeine in my system. Day four, today, the irritability is lower but I have some muscle aches and pains which could be from this or something else, but my son feels great except that he’s incredibly hyperactive, completely unlike any past behavior (and if it keeps up this way, we’ll be looking at stimulants! But I’m hoping it’s just withdrawal). He also had normal bowel function without medication for the first time in nine years.
I was expecting some withdrawal issues for him, but it was quite a surprise when it started up for me. It’s been very educational; I’m an adult psychiatrist in private practice and it’s making me rethink some things I thought I knew. Fortunately, in psychiatry we get a lot of practice in learning that everything we thought we knew was wrong.
You focus a bit more on gluten in your samplings, though you have mentioned casein. I get many inquiries from people who are wondering if they are experiencing milk withdrawal symptoms when they discontinue it from their diet for health reasons. Many seem to have the symptoms you note with the gluten. Have you heard of many patients suffering casein withdrawal symptoms? Have there been any studies in this area?
Dru-
Many thanks for your comments, if you have any sites with opiate/gluten sensitivity bulimia hyperlinks will be happy to post them-
Have recently been in contact with my colleague Tom O’Bryan in Chicago, a national expert on these matters, and look forward to interviewing him [podcast] on the opiate aspect of this process.
We talked about him and his DVD on gluten sensitivity back here:
Thanks,
Chuck
I have done extensive research which indicates that food binging disorder and bulimia are related to the opiate sensors in the brain. This is further enforced by the fact that the introduction of an opiate blocker such as natrexone will halt or considerably stem, the disorders. Since my diagnosis of gluten intolerance, and subsequent research, I have a high degree of suspicion that bulimics and bingers should be screened for celiac disease or gluten intolerance. I personally have not experienced binging or bulimia but have observed the behavior in a relative, who has experienced relief from binging after initiation of naltrexone.
Cecily-
Thanks for these important observations. Yes, very much like the recovery from addictions and brings the same difficulties into family life when one person must be “sober.”
Do take a look at this last post and review the links to the forums as those two are supportive, easy to *attend* and can address problems with family cooperation.
Almost need a counselor [not trying to make business] – or a third party to set up some mediated rules. As a trained mediator I can tell you that reaching areas of agreement and compromise will bring the gray areas of “what’s for dinner” right up onto the literal and figurative table.
-Might be able to do the mediation in just 1-2 sessions. This is not a question of “conflict” – as much as respect for mutual boundaries, and a delineation of specific metaphoric territories.
Thanks
Chuck
Dear folks,
I am a celiac, having been diagnosed nearly 8 years ago. As there is a genetic component to this disease, several family members have since been diagnosed also.
My thought has been all along that there is a grieving process that goes along with starting a GF diet. I have seen this in many client and family members (I fascilitate group support meeting, and meet with newly diagnosed folks to aid in understanding how to live gluten free). This reaction, at time from my own observations, have led me to believe there is the psychological piece of this as well. I have seen for example, with a close family member, that they cannot stick to the diet, wanting, almost as badly as an alcoholic or drug user, glutenous products. This person, and others I have noted, seem unable to comply with the diet, stating they “just had to have” whatever it was that had gluten in it.
Hence, my thought is that going gluten free for some is a huge psychological issue. The folks I have worked with all have the same sense, “I have felt this way for so long, what difference does it make if I cheat”. This attitude and thought process is very similar to addiction.
Thank you for this interesting article and I look forward to finding out more as research become available.
Warmly,
Cecily Baldwin
Cecily,
From my own experience it does appear that psychological issues are often associated – would be interesting to know exactly what what the neurotransmitter changes are downstream from gluten sensitivity that would encourage specific emotional problems.
cp