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  • Jefferson Adams
    Jefferson Adams

    Patients with Suspected Non-celiac Gluten Sensitivity React Adversely to Gluten

    Reviewed and edited by a celiac disease expert.

    Celiac.com 03/23/2015 - There's been a bit of ping-ponging going on about the status of non-celiac gluten sensitivity as a valid medical condition. Studies have yielded conflicting results, with some supporting, and others negating, the existence of non-celiac gluten-sensitivity. 

    Photo: CC--JeffreyWSo what's the deal? Does non-celiac gluten sensitivity exist, or not? Researchers and clinicians continue to debate whether people without celiac disease or wheat allergy who consume gluten can experience intestinal and extra-intestinal symptoms attributable to non-celiac gluten sensitivity (NCGS).


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    Taking the latest stab at the problem, a team of researchers recently conducted a randomized, double-blind, placebo-controlled, cross-over trial to determine the effects of administration of low doses of gluten to subjects with suspected NCGS. The research team included A. Di Sabatino, U. Volta, C. Salvatore, P. Biancheri, G. Caio, R. De Giorgio, M. Di Stefano, and G. R. Corazza. They are variously affiliated with the First Department of Internal Medicine at St Matteo Hospital Foundation at the University of Pavia in Pavia, Italy, and with the Department of Medical and Surgical Sciences at St Orsola-Malpighi Hospital at the University of Bologna in Bologna, Italy.

    For their study, the team enrolled 61 adults without celiac disease or wheat allergy, but who believe that eating gluten-containing food to be causing of their intestinal and extra-intestinal symptoms. The team randomly assigned participants to groups that received either 4.375 g/day gluten or rice starch (placebo) for 1 week, each via gastro-soluble capsules. Study subjects spend one week on a gluten-free diet, and then switched groups.

    The primary outcome was the change in overall (intestinal and extra-intestinal) symptoms, determined by established scoring systems, between gluten and placebo intake. A secondary outcome was the change in individual symptom scores between gluten vs placebo.

    Per-protocol analysis of data from the 59 patients who completed the trial shows that intake of gluten significantly increased overall symptoms compared with placebo (P=.034). Among the intestinal symptoms, abdominal bloating (P=.040) and pain (P=.047) were significantly more severe when subjects received gluten than placebo. Among the extra-intestinal symptoms, foggy mind (P=.019), depression (P=.020), and aphthous stomatitis (P=.025) were also worse when subjects received gluten than placebo.

    In this cross-over trial, subjects with suspected NCGS saw significantly more severe symptoms during 1 week of intake of small amounts of gluten, compared with placebo. So, at least for now, the NGCS ball seems to be back in the court that considers it a valid medical condition.

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    I was on gluten 5 years ago, horrible symptoms (severe brain fog, diarrhea, fatigue), blood test for celiac negative. Since then 100% gluten free, feel a lot better. Now when I eat only 2-3 grains of wheat, I get a strong brain fog that can last up to 10 days. Seems that I have a strong case of NCGS.

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    The one major problem I see with this study is what we all know, really, and that is those classified as having non-celiac gluten sensitivity may in fact have celiac sprue and have not been properly diagnosed prior to study. This is only one of many reasons these studies may not be conclusive as to the existence of the entity physicians seem to have fudged because they are so inadept at making an affirmative diagnosis of celiac sprue.

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    The crazy thing is, you are only considered to have celiac disease if your positive antibody reading is greater than 10. Yet ANY antibody response to wheat proteins indicates an issue. Even a 0.1 response is a response (and many people can return a very low reading due to a suppressed immune system, not because they don't have celiac disease or their NCGS isn't actually more severe than it seems).

     

    You are only considered to have celiac disease if your level is greater than 10 and you have detected gut damage, but couldn't NCGS simply be, like 'Metabolic Syndrome' is to diabetes, a possible precursor to celiac?

     

    Not everyone with Metabolic issues goes on to develop diabetes, but many do. Similarly, not everyone with NCGS will go on to develop 'full blown' celiac disease, but many do.

     

    The Medical profession never looks for anything until it is 'full blown'. Getting anyone with ANY level of antibody response, regardless of the numbers, off the trigger foods ought to be a huge preventative, not to mention money and resource-saving commitment within the 'health' industry.

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    I have had an intestinal biopsy and blood tests that confirm that I do NOT have celiac disease but I definitely, positively, without a doubt have intestinal troubles and skin rashes when I eat wheat. I am sensitive to some other foods too so I don't view avoiding gluten as a cure-all for every ailment. I hope, Jeff, that you will continue to support the NCGS among us because I assure you that the condition is real.

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    I have biopsy diagnosed celiac disease. My son also has biopsy diagnosed celiac disease. My daughter's blood test for celiac disease was negative so she didn't have a biopsy. She had more physical symptoms of celiac that either of us, so she tried a gluten free diet. There was so much improvement in her overall health that she has stayed on that diet for almost 9 years now. Is it really non celiac gluten sensitivity or really celiac that had not really shown up all those years ago?

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    I was also on gluten/wheat about seven years ago. Had all the classic symptoms, but in my case, it was not celiac but thyroid related. My thyroid levels were a mess and I had even developed goiters on my thyroid. After the doctor had me eliminate wheat/gluten from my diet, all these problems resolved and I felt 100% better.

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    I was also on gluten/wheat about seven years ago. Had all the classic symptoms, but in my case, it was not celiac but thyroid related. My thyroid levels were a mess and I had even developed goiters on my thyroid. After the doctor had me eliminate wheat/gluten from my diet, all these problems resolved and I felt 100% better.

    I am sure that wheat/gluten proteins trigger a huge array of health problems, celiac disease being just one of them. The most obvious issue connected to gluten is celiac, but that is only because it is the one disease that has been proved beyond doubt to be connected.

     

    More and more diseases and health issues are beginning to be linked to modern grains, but research on them is still very much in its infancy.

     

    Sadly, whilst even many with celiac slip through the net because the testing procedure is so unreliable, those with one or some of the seemingly unrelated non-gut issues are even less likely to be advised to try a gluten-free diet.

     

    Since I first visited my doctor with my suspicion about having celiac disease (when I was only given one blood test which was almost inevitably negative despite my raging IBS, stomach pain, restless legs and neuropathy which all went away on gluten free), she has become 'enlightened' and now will send patients who return a negative result for further testing on more occasions. Several of the doctors there will recommend gluten-free, and one is gluten-free himself.

     

    To find a doctor who is aware of the links between gluten and health issues other than celiac is a very rare and precious thing. What a great doctor you have!

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    I am one of the many who gave up gluten without a celiac disease test. I will probably never get a diagnosis, because even an amount that I can not even see will cause me too much pain to want to go back on gluten long enough to get the test. It is good to know that someone is looking out for us.

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    I too have been in pain for going on 8 years now. I have been to 3 different doctors with the same issues, extreme stomach pain, bloating, gassy, lethargic, constipation to diarrhea. All 3 Doctors have automatically (due to age) thought it was my gall bladder. After CT scan(s). They decided it was nothing more than IBS...eat more fiber, drink more liquid etc...when I tell them the only way I could eat more fiber would be if I ate the bark off of trees, they laugh well not sure what to tell you. The point is that none of these doctors have even thought about celiac disease. One of my coworkers suggested I try a Gluten Free diet. I have now been on the gluten-free diet for 6 weeks and there has been a world of difference. No more stomach pain, no more bloating, no more diarrhea or constipation.

    I now seem to have more energy, at least after lunch I'm not fighting to keep my eye lids from closing. I'm not sure I will have the blood test...because to me it isn't important to know whether or not I have celiac disease....because as long as I am off dairy and Gluten....I FEEL SO MUCH BETTER!

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  • About Me

    Jefferson Adams is Celiac.com's senior staff writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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