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  • Jefferson Adams

    Study Reveals That Even Careful Gluten-Free Dieters Are Eating Gluten Regularly

    Jefferson Adams
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    Reviewed and edited by a celiac disease expert.

      Most folks on 'gluten-free' diets are unintentionally eating gluten.


    Image: cc0 1.0--Open Grid Scheduler / Grid Engine
    Caption: Image: cc0 1.0--Open Grid Scheduler / Grid Engine

    Celiac.com 01/07/2020 - Everyone with celiac disease needs to follow a gluten-free diet. However, celiac patients on a gluten-free diet often suffer from villous atrophy, which might point to regular accidental gluten ingestion.

    A group of international researchers called the Doggie Bag Study group, has found that gluten ingestion is common even among those who make a concerted effort to avoid gluten. The study group included Jocelyn A. Silvester, Isabel Comino. Ciarán P. Kelly, Carolina Sousa, and Donald R. Duerksen.



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    The group's analysis found that antibody tests on celiac patients who report good or excellent gluten-free dietary practices show that most patients had ingested measurable amounts of gluten in the 10-days before biopsy. These findings indicate that most people with celiac disease are not as gluten-free as they might think, and would likely benefit from treatments other than the simple gluten-free diet, according to Jocelyn A. Silvester, MD, PhD, a pediatrician at Boston Children's Hospital and Harvard Medical School, Massachusetts, and colleagues. 

    Silvester and her colleagues write that their findings indicate that a completely "gluten-free diet may be more aspirational than achievable, even by highly committed and knowledgeable individuals."

    In their study, which appears in Gastroenterology, the researchers report on 12 female and 6 male asymptomatic celiac patients who had not intentionally consumed gluten. All patients reported diligently following a gluten-free diet and avoiding gluten.

    Patients were recruited from the Manitoba Celiac Disease Inception Cohort study for the purpose of assessing potential gluten exposure in patients who were supposedly gluten-free. More than three out of four participants self-reported accidental gluten exposure on the Gluten-Free Eating Assessment.

    For 7 days, study participants allowed testing on a representative 25% portion of food they ate, including sauces, dressings, and flavored drinks, but excluding naturally gluten-free whole foods, such as fruits, vegetables, and wine.

    Using food testing and gluten-related antibody tests to detect gluten in both the food samples, and in stool and urine samples, of adults with celiac disease who claimed to strictly follow a gluten-free diet, the investigators found substantial evidence that these "gluten-free" diets still included gluten in various amounts.

    In food testing samples from nine participants, 40% contained detectable gluten over 20 ppm, while 20% contained contained detectable gluten over 200 ppm.

    In excretory assays, gluten immunogenic peptides were detectable in 30 of 519 (6%) samples from eight participants and in 8 of 75 (11%) stool samples from five participants. Positive samples were distributed throughout the day.

    Read more at Sciencedirect.com

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    In food testing samples from nine participants, 40% contained detectable gluten over 20 ppm, while 20% contained contained detectable gluten over 200 ppm.

    If these are patients that are diligent and knowledgeable about eating gluten-free I would be really important for other Celiacs to know what this 40% of foods are that contained over 20ppm and especially the culprits over 200ppm!

     

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    On 1/7/2020 at 5:17 PM, Guest Jacques said:

    If these are patients that are diligent and knowledgeable about eating gluten-free I would be really important for other Celiacs to know what this 40% of foods are that contained over 20ppm and especially the culprits over 200ppm!

     

    I believe this for sure!  I have Dermatitis Herpetiformis, the Celiac rash, and no matter how strict I am about trying to eat gluten free, I get regular break outs, although not as severe as when I was eating a regular diet.  The last thing I found out that had hidden gluten was plain, fresh Foster Farms chicken breasts.  I hadn't checked them because, well...plain, fresh chicken.  I decided to call about their turkey and ask about the chicken breasts, too.  Both were not recommended for Celiacs because they are processed on equipment that also runs gluten containing products.  This is a difficult world to navigate for the gluten sensitive.  

     

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    First, the sample size (18 people) for this study was extremely small and everyone in the study are asymptomatic, so while they might be diligent, they would most likely not be as diligent as someone who gets sick when they consume gluten. It doesn't say if the food that was tested was certified gluten free, which is supposed to be 20ppm or below and if the place(s) the food was prepared and consumed was gluten free or if it also had gluten food. It would also be useful to know how long ago these people were diagnosed and how long they have been gluten free as it takes time to heal the gut. The title of this article is misleading because the study was too small and had too many variables to draw any conclusions about how much gluten is consumed by people who follow a gluten free diet. I know many people who get sick if they consume gluten will only eat food that is naturally or certified gluten free. I tried to read more detail on the study, but it requires you to be a member or pay money. I hope this doesn't influence doctors who are already sadly misinformed about celiac.

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    Wow!  I concur with all the comments made.  The group was small and what were the foods they ingested that had gluten.  Was really shocked to learn Foster Farms chicken breast are processed on equipment that also process gluten items.  What are we to do start are own farms???

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    On 1/12/2020 at 8:05 PM, Guest Susan R. said:

    I believe this for sure!  I have Dermatitis Herpetiformis, the Celiac rash, and no matter how strict I am about trying to eat gluten free, I get regular break outs, although not as severe as when I was eating a regular diet.  The last thing I found out that had hidden gluten was plain, fresh Foster Farms chicken breasts.  I hadn't checked them because, well...plain, fresh chicken.  I decided to call about their turkey and ask about the chicken breasts, too.  Both were not recommended for Celiacs because they are processed on equipment that also runs gluten containing products.  This is a difficult world to navigate for the gluten sensitive.  

     

    Thanks for sharing,very useful

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    This was an online in-press copy--the article is yet to be published in its final form---presumably  more information is forthcoming.  As for the "small sample size"---the # of patients here is not critical---they were not trying to achieve a statistical significance with the results as in determining the efficacy of a drug compared to placebo---there the # is important---here they were just looking to see if a possible situation--gluten being ingested on a strict GFD by diligent, adherent patients--was,in fact, occurring and hence might explain the persistence of villous atrophy in such patients. Also, as for using asymptomatic patients, again for the purposes of this study it would not make sense to use patients on a GFD who get sick since it would be very likely they were ingesting gluten, while with the asymptomatic patients you could not tell--one would think they were not since they were asymptomatic but why then do such patients have persistent villous atrophy-?---could it be there is still significant gluten in a strict GFD-----that was the point of the study and that is what it showed---there is!----maybe you suspected that in the past but now with these new assays it can AND HAS BEEN PROVEN! As for "too many variables"---I am not sure there were any variables at all---these were asymptomatic diligent adherent patients on a GFD and as such were only eating certified gluten free food--at least that is what they attested to; per the article they had been on a GFD at least 2yrs-so I think you can draw conclusions from this study as I stated above----similar results were obtained in a sub-analysis of the LATIGLUTENASE study which showed Celiacs on a GFD were ingesting a mean of 150-400mgs/d.!---this study supports those results As for Mr Seth---what fear mongering are you talking about?----unless of course you fear the truth---the study was trying to get to the truth.  

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    @Anthony C, you can say that it has been proven that 18 people ingested significant amounts of gluten while on a gluten free diet, but I don't think you can extrapolate that to the general population of people on a gluten free diet. My comment on the small sample size has to do with the title implying that anyone eating a gluten free diet is eating significant amounts of gluten. I have had an endoscopy since I have been gluten free and I did not have damage to my villi. As I said, I felt the article was misleading and I would like to see the full report to better understand the study, if the participants ingested certified gluten-free food and what Marsh score they had from their endoscopies. 

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    On 1/15/2020 at 3:05 PM, Guest Rosemary Guest said:

    Wow!  I concur with all the comments made.  The group was small and what were the foods they ingested that had gluten.  Was really shocked to learn Foster Farms chicken breast are processed on equipment that also process gluten items.  What are we to do start are own farms???

    I am lucky enough to live in rural community. I go to local butcher for meat . He knows the problem and makes sure there’s no cross contamination.  Search out. Butcher. It’s makes big difference 

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. 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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