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  • Jefferson Adams
    Jefferson Adams

    How Much Gluten Does an Average Celiac Patient Accidentally Consume?

    Reviewed and edited by a celiac disease expert.

      A new study shows that many gluten-free people with celiac disease are exposed to low levels of gluten that can trigger symptoms and cause gut damage.


    Celiac.com 04/02/2018 - Exactly how hard is it for people with celiac disease to faithfully follow a gluten-free diet? Anyone who’s ever tried to completely avoid gluten for any length of time likely has a story to tell about accidental gluten consumption, and the consequences that follow. It’s not at all uncommon for gluten-free celiacs to be exposed to low levels of gluten that can trigger symptoms and cause persistent intestinal histologic damage.

    To gain an understanding of gluten consumption across a wide population of celiac patients, a team of researchers recently set out to determine how much gluten people eat when they are trying to follow a gluten-free diet. 

    The team included Jack A Syage, Ciarán P Kelly, Matthew A Dickason, Angel Cebolla Ramirez, Francisco Leon, Remedios Dominguez, and Jennifer A Sealey-Voyksner. They are variously affiliated with ImmunogenX in Newport Beach, CA, the Beth Israel Deaconess Medical Center at Harvard Medical School in Boston MA, and with Biomedal in Seville, Spain.

    The team began by analyzing data from previous clinical studies. That meta-analysis focused on data from a clinical study of gluten in stool and urine in celiac patients, a second study on non-celiac populations; and an analysis of data from trials for the investigational therapeutic latiglutenase. 

    As part of the stool and urine studies the team included controlled gluten challenges. They then applied a calibration factor that allowed normal ingestion of gluten to be computed from the urine and stool measurements. They determined gluten consumption by estimating how much gluten was eliminated from patients’ diets due to a trial effect that resulted in improved histology, even in the placebo group.

    Using the stool test, the team estimated the average inadvertent exposure to gluten by celiac disease individuals on a GFD to be about 150–400 mg/d, while they estimated the median exposure to be about 100–150 mg/d. Using the urine test, those numbers showed an average exposure of about 300–400 mg/d, with a median of about 150 mg/d. 

    Meanwhile, data analyses showed that celiac patients with moderate to severe symptoms showed that patients ingested substantially more than 200 mg/d of gluten.

    The data indicate that many gluten-free celiacs regularly consume enough gluten to trigger symptoms and perpetuate gut damage.

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    I wonder how much is contamination from “facilities that also process wheat”.  I hate that warning on products that should naturally have no gluten.  gluten-free trail mix is especially hard to find in my area, which is ridiculous.  

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    I was diagnosed with Celiac in 2003. I followed a gluten-free diet for 14 years, but was still frequently sick with gluten symptoms. Last year in March of 2017, I went entirely GRAIN free, and began the very intensive elimination diet promoted by Sarah Ballantyne, the Paleo Mom, called the "Autoimmune Protocol". I am happy to say that not only am I symptom free of the usual Gluten issues, I have also resolved a number of other long standing issues including joint pain.  I will never eat any grain again.

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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 2,000 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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