Patient Perspectives on The Gluten Syndrome,

including Gluten Intolerances, Gluten Sensitivities,  Celiac Disease,

and the risks of Gluten Challenges for Diagnostic Purposes





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Adverse reactions to starting the gluten free diet


Jump to research and theories  Jump to reperfusion theory, Jump to gluteomorphin withdrawal theory Jump to schizophrenia research


Case discussion - 8 year old girl hears voices upon withdrawal of gluten and later milk


Family history - This an only child, mom is vegan. The little girl is vegetarian and therefore did not wish to take cod liver oil.  Dad is involved with a non profit organic testing lab so they are very aware of toxins.

Note:  There is schizophrenia in the extended family including fatal violence

Links to similar situations, comments, etc.  Will update as I find more.

Professional comments posted anonymously unless permission is given to use practitioner's name.


Feb 20 approx - Gluten free diet initiated for chronic diarrhea, improvement by 1 week, negative tests next week, then removed lactose also. Cross contamination is very likely due to lack of info.   

Voices appear around 10 day to 2 week mark and worsen over a few days, Child is sobbing, knashing teeth, clenching fists, tearing tissues for hours

 Gluten is reintroduced with some temporary unstable relief.

March 10 Avoids concert, diarrhea worsens, voices, ER recommends psychotherapy

March 11 and 12 Child avoids social contact with peers

March 11 History of tactile issues, continuing voices and social avoidance. Diarrhea worse.  Mom has a complete diary.

iHistory of bad teeth, causing infection near eye. Father's alcohol intolerance spreads to hangover effect after normal meals, responds to amitriptyline. Fatal  schizophrenic violence in Mom's extended family.

Diet clarification  Voices appeared in an initial GF trial that was likely cross contaminated.  How to wean her back off gluten?

March 16 Child still struggling, Vojdani diagrams explained to parents

March 18 Voices continue. Severe constipation found on x ray. Celiac, gene tests run.

March 19 Colon cleansing ramps up voices to "awful".  Barely making it hour by hour.

March 20  Still unstable. Will limit her to one gluten meal a day.

March 21 and 22, Weekend - Screaming, growling, attacking couch, parents distracting with bike rides. Plan to call ____(an autism aware doc) on Monday.

March 23 Rough, 1st day gluten free, epsom salts and clay baths, fish oils, bowels are moving.

March 27 Friday Still struggling.  Child is vegetarian and prefers a substitute for cod liver oil.

March 31, Tuesday - Much better - waiting for tests to return. Biomed specialist consult on hold.

April 3, Friday - Nightmares, some growling, acupuncture

April 5 and 6 - Child socialized all weekend.  Some voices in evening, cleanup time, and when spinach is eaten.  (Note: Spinach breaks down into morphins.)  No nightmares for 2 days.

April 11, Saturday - child doing well, blue greenish round things in stool.

April 14 and 16, Tuesday and Thursday - Child is fine, eating non stop, stool test positive

April 22, Wednesday - Disappointing dr visit, negative celiac antibody tests, susceptible genes

May 13 Wed, Child was fine, voices/bowel problems recur on vacation despite GF efforts.


NOTE: Professional comments will be posted anonymously unless permission is given to use practitioner's name.  The purpose of this page is not to solicit free advice but to find practitioners qualified to treat this type of reaction, and provide and possibly exchange information between practitioners who may be faced with a similar patient.   It is the goal of this website to provide support for patients and practitioners in these situations.


If you are a practitioner and wish to contribute privately or publicly please contact Olive Kaiser or or call 630-628-9126 or 630-808-2079


Why?  These reactions are not well understood but often gluteomorphin withdrawal is suspected.  

Go to theories and research.


UPDATE: March 12, 2009


Here are links to several searches of adverse reaction forum posts , more , more 

Below  is an update on adverse reactions.


Rarely a patient may experience temporary symptoms that resemble "withdrawal" near the start of a gluten free diet. More...




Below is a summary of responses received to the following post on the ICORS celiac list, December 2007.  Thanks to all who generously contributed their experiences and time during a busy holiday season.


Here is the original question


Hi group,
Does anyone have experiences or research that indicate possible adverse reactions to going gluten free?
I am aware, painfully, of bad reactions from going gluten free and then going back to gluten either as a gluten challenge or indiscretions and going on and off the diet.
My question is about just going gluten free to begin with, particularly emotional/depression/psychological issues, but I include any negative reaction in my question. 
Any adverse combinations of other treatments simultaneous to starting the GF diet?
I will summarize. 
Thanks all,

Olive Kaiser or



Also click here for interesting research that may be applicable.



The responses


April 2008


I add this response after a conversation with a well known and very experienced, knowledgeable person with diagnosed celiac disease (the villi damaged subset).  Here are his comments summarized.


"The gluteomorphins (opiods) create an addictive opiate like response in the brain. This is known through research.  When gluten is removed from the diet, and the gluteomorphins dissipate, the effect may be similar to withdrawal from alcohol or other addictive substances.  I know because I am an alcoholic.  I have been dry for 26 years.  I recognize the strong similarity between the discontinuance of alcohol and the discontinuance of gluten."



December 2007


My (then) three year old daughter seemed to "get worse" for about one month after going gf. She seemed to experience more pain and distress, and she had terrible, uncontrollable tantrums. (for example - she managed to get herself out of her car seat while we were driving, and once on a flight my husband and I between the two of us could not keep her buckled in her seat. We had to put her on the floor of the airplane and I laid down on top of her as the plane took off - it was a nightmare). after approx. one month gf we saw a marked improvement - first in her mood and behavior. It took longer before her gi symptoms got better and she resumed growing. Hope this info is helpful, Lynn

Thank you so much for sharing. Knowing of your daughter's severe reaction is very helpful to us. And also that it resolved in time. Did you find any strategies that you thought helped her through it?

Yes –I had to find a way to calm her – bubble baths and soft lighting and music seemed to help calm her. Then I would give her a little pepto bismol if she was complaining of pain, or feed her very simple food such as plain white rice or yogurt.

My son – who is also celiac – was helped more by distraction when he had pain – we would put him in front of an engrossing movie and also give him either some pepto bismol or some very simple foods.

My daughter is now 14 and completely healthy and normal in every way – it took her about 2 + years to fully recover after going gf



I suppose the only people who will Email you are those who had some sort of bad reaction. The only bad reaction I had was when I tasted GF bread for the first time. Ugh. Now I bake my own.

I began to feel stronger and more alert within two weeks of going GF. I went from being someone who had to take two naps a day to hiking to the bottom of the Grand Canyon and back up the same day.



There is often depression associated with a new diagnosis of a chronic illness, and also anxiety/depression/anger/hostility/resentment can affect both the newly GF and their family/friends. The GF can be very hard to adapt to, and can be viewed as a horrible burden by many.




I believe, if I remember correctly, I mostly experienced a period of grief at the loss of all the good things I could never eat again. Also, I expected to recover almost immediately, and looking back, it too years. Things I learned along the way: B-12 stopped the pain in my joints and I quit feeling 90 years old almost immediately. Omega 3 helped lift the depression.

Presently, I am in the clinical trial with Alba Therapies for the celiac drug. Honestly, I feel wonderful. This drug seems to stop the inflammations that have plagued me even after diagnosis.

I hope this isn't to much information that you don't need. It is a microcosm of my journey.

I wish you the best, (gluten free 5 years)



Was excited @ first to finally be diagnosed as have had problems for years and was relieved to finally know how to "start feeling better"- then became increasingly stressed (frustrated) in learning "what is ok to eat."    Still have my days of feeling down-in-the dumps as the diet is difficult to cook when another family member wants regular food and doesn't always understand.  And, of course, when I'm really tired - but take a nap and wake up feeling ready to start fresh.  So - depression is as bad as it gets for me.

Also, find a Celiac Support group in your area, see a dietitian, and find Natural Food store(s) in your area - we have one in town that is 10 minutes drive away - they have a whole section in freezers and also in pkg mixes to pasta, etc. Remember, eating fresh vegetables and fresh fruits help fill the gap.  Everyone's reaction to foods is different.  Hang in there!



I think what happens is a reaction to a lot of the non-gluten free grains/seeds, etc....I cannot tolerate most of the stuff. If you happen to have calcium deposits in your body and are reactive to oxalates, you can really mess yourself up by eating buckwheat and a lot of other so called healthy foods. I highly recommend the Low Oxalate Cookbook --for the oxalate info--not the recipes if you think oxalates might be a problem.  Lots of info on the net about oxalates, but the cookbook is the best source of essential info. You have to consider other possibilities---not just  getting stuck on identifying every molecule of gluten on the planet. Good luck.



I have heard that people can feel worse when they first go gluten free. This can last from a few days to a few weeks - sort of like a detox reaction? I know when I went gluten free I felt much worse for the first 3 days and then on day 4 I started noticing the first of many positive changes - I noticed my knees stopped hurting. If I had not been warned about the "worse before getting better" reaction, I might have given up on day 2.




weight gain!



I really don't remember exactly how I was feeling worse - at the time I went GF, 4 years ago,  I felt so bad I thought I was dying. Fatigue and depression were two of my many symptoms.

I don't remember crying - but then, I have never cried much. I hold it all inside - that is a good solution, HA! All I remember now is that it felt worse for the first few days when I gave up gluten. I probably would be dead by now if I had not gone GF. I did not have GI symptoms other than reflux.




When my daughter and I had to go gluten free we both were eating a lot more than normal. So much so, that I called the doctor. We just couldn't get full. He told me it was our bodies' way of catching up
on all of the lost nutrients. It leveled out after a few months.



Many people will feel depression or almost a sense of grieving over having lost their best friend "eating as they knew it". I think this happens more often in people that did not have severe complications and had the joy of feeling like a new human after on the GF diet for only a few days, or of not spending hours in the john or afraid to even go out without knowing where the nearest lav is. Those people are overjoyed at finding out their cure is just eating a healthy diet. For those not so afflicted, it can be upsetting. Also,
college students have a very difficult time emotionally. Their diet consists of pizza and beer and late night socialization with nothing to eat and peer groups who don't understand. I think they find it very difficult to maintain a strict GF diet and then the problems compound again with fatigue, feeling ill, rejection, a feeling of loss, etc.



I believe in his book, Dangerous Grains, Dr. Ron Hoggan mentions that gluten can act as an opiate on the digestive system.  When one removes it from their diet, they can experience a period of withdrawal which can entail some irritability.  I did experience some mood swings once I eliminated gluten but I have never regretted it!  It does require perseverance so be patient with yourself as your body adjusts but it is worth the temporary inconvenience.  Good luck and take care.



Yes, this is common. There was a thread on the list about this a few months back. It seems that most of us have some kind of negative reaction. My problem was mainly with vomiting. Others reported other physical and emotional issues. The problems clear up within a few weeks to a few months.



Going gluten-free means:

It took me 10 years to figure out why the same thing happened to me.  With the gluten-free diet, you are no longer eating *fortified* cereals/breads, which means you are experiencing a reduction in dietary:

iron (ever notice the cereal box says: one serving provides 30% iron requirements)
and B complex (cereals and breads are always fortified with thiamin, riboflavin, folic acid, B6 ect..)

So, if you can, find a supplement that contains:
iron (15-20mg) and B complex (10-20 mg for each of the B vitamins)

Also: Calcium, magnesium, vitamin D are important if you are limiting dairy intake.



While your body is ridding itself of toxins, and trying to heal the villi, you usually do not feel so hot. It can take a year or two to feel better and see a difference. Depends on how young you are and how long you had CD. People who are older may not entirely heal, some do.




I would imagine most people going gluten free have emotional/psychological effects, particularly those who must go GF but never had bad symptoms. You are suddenly different from most people, you are suddenly sort of sick and at higher risk for some diseases. Also, it is a loss -- a loss you are angry about and must grieve. The loss includes gluten-containing foods, and also all spontaneity. Every social gathering or outing of any sort is a big hassle -- phone calls, special arrangements, making your own food, having the talk center around the fact you are or are not eating something.

When my 14yo (now 15) son was diagnosed, he had/has some depression and anxiety about being different from other kids, how he was going to deal with social gatherings, band trips, school lunch, college. I think it is a lot worse for kids than adults, who have learned not to care what others think or say, and who have a much greater degree of control over what they do. (My son had no symptoms.)

I have read research consistent with what I have personally seen/experienced -- you could probably find some on I even read a study that found that the mortality rate of kids diagnosed with celiac is much higher than expected, due to higher suicides and accidents. I think that study is on, but if not you could probably find it by googling.


Good points, I've wondered if the suicide rates with kids are related to cheating and mistake induced depressions as well or more so than the social issues. My daughter went into a severe depression when she did a gluten challenge. But she didn't experience the severe depression originally. Thanks so much for your reply.




Your body can actually set up an addiction to gluten. Why - i don't know. the adverse reactions you described are those associated with withdrawal.



I have been constipated after going gluten-free, otherwise my digestive system has improved, especially in the reduction of reflux. I have only been on this new and third restrictive diet for a month but I am a believer and I resisted a chance to cheat, a Christmas cake that I paid thirty-six dollars for.


Ok, I've heard of constipation before. Any ideas on why and how you resolved it or did it just resolve itself in time. Also did you substitute the gluten with the typical higher carb/sugar substitutes? Thanks so much for your reply?


No reply to this second question yet.  Will post if a reply is received.




It could be that in going g.f. you are adding more of something else (non-gluten) that wasn't a problem before because 1) you immune system was overwhelmed by the gluten, or 2) you weren't eating very much of it before...could be almost anything.  Obvious are corn, milk, soy.  Less likely but possible, are rice, tapioca.  

Bean flours are not all created equal.  The Eat Right for Your Type book lists about 2 dozen different types of beans but there's an assortment that's not good for each particular blood type.

Potatoes & potato starch in particular can also be the culprit.. I'm a Type O so when the book suggest white potatoes could be a problem I was skeptical but decided to go potato free for a couple of weeks.  In less than I week the pain on the outside of my bones was gone...I'd been starting my day w 3 ibuprofen for that pain for years.  The pain I get from a large baked potato is equal to 1 Tbs. or less of potato starch.  Giving up potatoes was harder than going g.f. but I don't miss the daily inflammation & pain.  I do pass on most g.f. products as well because the potato starch has such a potent effect.

You have to be your own detective.  Attached is a copy of something I put in our NL a few years back.  It gives info on food diary & other resource.  Enjoy!



It's been a long time but I noticed positive changes immediately. They were so dramatic that my doctor recommended going gluten free without the biopsy since it was before the blood tests were developed.

That's great. You might not have had villi damage anyway. A lot of people don't but they are damaged in some other important places in their bodies. The villi gold standard dx may be very misleading for those who may have the (serious and also autoimmune) intolerance reaction.  Thanks for your reply.



Many of us try to replace gluten with sugar. The result is “Candida Albicans". You'll find many articles on the internet about it and how to cure it.  Have Happy holidays!




Going GF was a "mixed bag" for me.  There was both a miracle & a downside.  The miracle was complete amelioration of lifelong (50 yrs.) of severe constipation & IBS.  The IBS was of such severity that I had had 3 hospitalizations for it alone, over the decades.

But you asked about the adverse reactions/downsides of going GF.  I did suffer increased joint pain & swelling, as well as muscle pain, my first couple of yrs. GF.  It took me a while to consider that it might be something to do with GF diet.  Note, I did have arthritis pre-exisiting GFD.  But it got sig. worse.  Anyway, turns out I am nightshade sensitive in addition to being gluten intolerant.  We had done the GFD
as a family & tried to make it interesting for our celiac & gluten-allergic (IgE) teens.  That meant increasing spicy ethnic dishes, which they love.  So lots more of every sort of pepper than pre-GFD.  Lots more potato & tomato, too.  I would estimate that my personal potato consumption tripled on GFD.  That incl. potato starch used in baking.  Tomato doubled, and pepper intake quadrupled.

A nightshade-free diet trial (in addition to GFD) with subsequent challenges of nightshade foods (potato, tomato, bell & spicy peppers along with their related spices), eggplant) confirmed that the nightshades were responsible for the increased joint pain.  Before the NF trial, during the trial & also the challenges, I scored every sore joint in my body on a 0-5 scale for pain, redness & swelling.  Thus I had a baseline of "grand totals"  for each segment.  Nightshades roughly double my joint pain scores, which is a combination of factors incl. severity & number of joints affected.

The nightshade issue is not an allergy, but some "other" type of sensitivity.  I have done both IgE & IgG testing for nightshades (& gluten also) & do not have antibodies.

In a sort of backward way, the GF diet helped me discover the NF sensitivity, but first I did go through a very painful period. To this day I am GF, NF, DF & EF.

Good luck with your research.  I do enjoy the Gluten Sensitivity site. It is often mentioned at our local GIG meetings as a resource to help explain things to newbies.  Best wishes.


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Research that may apply to adverse reactions to the GF diet.  Reperfusion injury and Gluteomorphin withdrawal theories.


Hypoperfusion and Ischemia Reperfusion injury theory


1.  Hypoperfusion and ischemia/reperfusion injury: Note: this this only a suggestion


hypoperfusion  -  (hypo - less than quantity than normal) perfusion (the passage of a fluid through the vessels of a specific organ)




ischemia/reperfusion injury. - (Ischemia - reduced blood flow.  Reperfusion - return of normal blood flow.) 


This phenomenon can be compared to power surges that occur after electricity is reduced or cut off in a blackout or brownout.  We run around and turn off our computers, microwaves, and sensitive equipment to protect them from damaging surges when electricity is restored.


A similar mechanism can happen when blood flow is reduced to areas of our bodies.  That's ischemia or hypoperfusion.  Brain cells are particularly susceptible to adequate, stable blood flow since they have no reserve energy supply of their own (like a backup battery) that other organs/tissues possess. 


It is well known in medicine that when blood flow returns to tissues (reperfusion) after a reduced blood flow event, (example, hypothermia/near drowning or heart incidents), some tissue damage will occur.  The goal is to reduce this damage as much as possible. 


When gluten/food intolerant persons ingest gluten in "normal life" situations, before they are aware of their intolerances, they are likely to experience ongoing hypoperfusion, ie., restricted blood flow in various areas/organs including the brain.  (Many food intolerant persons complain of brain fog, or other mental/neurological issues.)  Here is a research article.  Obviously, abnormally reduced blood flow to any area of the body will eventually cause negative consequences. 


When these patients start the gluten free diet, at some point various areas of the body may experience a normalizing increase of blood flow. This has been demonstrated in research.  It has been suggested that in some cases this may cause a degree of ischemia/reperfusion injury.  There is little research on this phenomenon but if it in fact does occur in some cases, patient experience as noted in the responses below may suggest that symptoms caused by this injury may improve/resolve as healing progresses. 


However, should the patient become discouraged and return to consuming gluten, further damage may occur through fresh reduction of blood flow.  Also it is well known that reaction to reintroduction of gluten often increases in severity many fold after the body has experienced a healing time off gluten.


Furthermore, if the patient also discontinued other cross reactive foods such as corn, soy, egg, milk, etc., thus removing a great deal of inflammatory triggers, it makes sense that reperfusion may be greater and a backlash reaction to reintroduction of any or all of these foods may be worse.


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This study underlines the importance of maintaining a strict gluten free diet  here:


Mortality in patients with celiac disease and their relatives: a cohort study


This study compares 1072 celiac patients with 3384 of their relatives over 25 years.


Patients most likely to maintain a strict gluten free diet died half as often as their relatives.


Patients who blew off the diet completely and ate "normally" died twice as often as their relatives.


Patients most likely to cheat on the gluten free diet died 6 times as often as their relatives.


Why? Is continued ischemia/reperfusion injury a factor for those who are only partly compliant? 


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Regional cerebral hypoperfusion in patients with celiac disease.

Addolorato G, Di Giuda D, De Rossi G, Valenza V, Domenicali M, Caputo F, Gasbarrini A, Capristo E, Gasbarrini G. Institute of Internal Medicine, Catholic University, Rome, Italy.

Neurologic Disorders in Patients With Celiac Disease: Are They Mediated by Brain Perfusion Changes?: In Reply Nathanel Zelnik Pediatrics 2004;114;1734-DOI: 10.1542/peds.2004-1874
Ludovico Abenavoli, MD Lorenzo Leggio, MD Daniela Di Giuda, MD Giovanni Gasbarrini, MD Giovanni Addolorato, MD Institute of Internal Medicine  Catholic University of Rome  00168 Rome, Italy

Range of Neurologic Disorders in Patients With Celiac Disease
Nathanel Zelnik, MD; Avi Pacht, MD; Raid Obeid, MD; and Aaron Lerner, MD

Mortality in patients with coeliac disease and their relatives: a cohort study
Giovanni Corrao, Gino Roberto Corazza, Vincenzo Bagnardi, Giovanna Brusco, Carolina Ciacci, Mario Cottone, Carla Sategna Guidetti, Paolo Usai, Pietro Cesari, Maria Antonietta Pelli, Silvano Loperfido, Umberto Volta, Antonino Calabró, Maria Certo, for the Club del Tenue Study Group   


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Gluteomorphin withdrawal theory


Opioid food peptides  (Source Wikipedia) Life Science Encyclopedia entry

Gluteomorphins are pieces or peptides  of gluten whose molecular sequence is similar to an opiate.  Casomorphins are pieces of milk proteins, casein, with a similar sequence.  they tend to get "caught in" the opiate receptors in the brain and sometimes possibly the gut.  Removal of these pieces from the opiate receptors may cause a temporary withdrawal effect similar to drug withdrawal and can be quite traumatic.  A google search of gluteomorphins returns numerous hits but nothing comes up on even though there are articles that mention the word on pubmed.


A referenced explanation of gluteomorphins here

More coming




Julie Matthews Certified Nutrition Consultant

As Jon Pangborn, Ph.D. describes, the enzyme DPPIV, which is also called CD26, has several other functions in the body, including involvement in signal transmission via lymphocyte receptors, and assisting the enzyme, ADA, in processing adenosine as an ADA binding protein. DPPIV is impaired by toxic heavy metals like mercury, lead and cadmium, a milk allergy, organophosphate insecticides, and yeast. Children with autism have greater toxic metal burdens, and one theory is that these heavy metals knock out this DPPIV enzyme, and the impaired DDPIV leads to improper processing of dairy and wheat. A supplemented plant analog version of DPPIV cannot substitute for the animal version completely, but it can certainly help.  (Note: It is believed that DPP IV is the enzyme that breaks down gluteomorphins and casomorphins)



Autism article discusses gluteomorphins and casomorphins


Severe 6 week withdrawal and temporary measures that brought relief. Wm ShawPhD

To search these articles, go to "Edit" on the top browser bar of Internet Explorer, and choose "Find" or "Find on this page" off the drop down menu.

Search this article for possible length of "gluten withdrawal" and "gluteomorphins"

Scroll for this article on Gluten/Casein Peptides from Gluteomorphins and Casomorphins

Comments from the Feingold Association


Search this article for "gluteomorphins" and "withdrawal"


Search this Alternative Medicine Review for "gluteomorphins" and "withdrawal"


Search this document from Kirkman Labs for "gluteomorphin" and withdrawal"


Check page 42 of this "Clinical Psychology " article


Wikipedia article defines opiate peptides


CorePsychBlog article gluteomorphins  react with the temporal lobes, which are involved in speech and autitory integration


Opioid-like peptides act on the body's endogenous opioid receptors, having diverse effects including altering pain perception, respiration, GI motility and sociability.



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Schizophrenia research - More coming


Feb 2009 - Schizophrenia, gluten, and low carbohydrate, ketogenic diets: a case report and review of the literature  February 26, 2009 Nutrition and Metabolism 2009, 6:10  doi:10.1186/1743-7075-6-10 

This article is available from:

Bryan D. Kraft and Eric C. Westman  Dept of Medicine, Duke University Medical Center, DUMC Box # 31179, 2301 Erwin Road, Durham, NC 27710 USA and Division of General Medicine, Department of Medicine, Duke University Medical Center, 4020 North Roxboro St. Durham, NC 27704, USA  Email: Bryan D Kraft -; Eric C Westman* -

* Corresponding author  Full Text here 



Professional responses


Sorry no time to read all of this. But this girl needs genetic testing for methylation problems and treated accordingly. And detoxed (colonic?). Her S & S are likely due to withdrawal from the opiate stimulation of the gluteomorphins.

The mother can schedule a consultation with me (by phone) if she wishes

Dr. Thomas O'Bryan 630-836-9900


Professional opinion

I have not seen this, but it reminds me of the work that Ron Hoggan, Ph.D. has done and writes about in Dangerous Grains. He describes an opioid effect of gluten. This might suggest that removing gluten could then potentially cause something like an opiate withdrawal. I'm not an expert in opiates, so I can't say if it really fits her symptoms, but you might consider this and even talk with Ron. I hope that helps. Please let me know if you learn anything more.



Dr. Stephen Wangen, ND
IBS Treatment Center/Center for Food Allergies








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