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  • Jefferson Adams
    Jefferson Adams

    Celiac Patients Are Bad at Judging Gluten Exposure Based on Symptoms

    Reviewed and edited by a celiac disease expert.

      You feel a bit off, and you just know gluten is to blame. But is it? According to a new study, people with celiac disease can’t reliably determine the extent of gluten exposure based on symptoms.


    Celiac.com 11/19/2018 - People with celiac disease cannot reliably determine whether they ate gluten or not based on symptoms, however severe those symptoms may be, according to research presented by Amanda K. Cartee, MD, of the Mayo Clinic, and her colleagues, at the American College of Gastroenterology Annual Meeting in Philadelphia.

    Because there is presently no FDA-approved test to confirm gluten exposure, celiac patients commonly rely on the presence or absence of gastrointestinal or other symptoms as an indicator of gluten exposure. But how reliable is that method? Not very reliable at all, says Dr. Cartee.

    Now, the study was small, but it was also rigorous. Dr. Cartee and her associates developed a double-blind, placebo-controlled gluten challenge to identify the rapid onset of symptoms after gluten ingestion, and to figure out if celiac patients could really tell whether they had been exposed to gluten. 

    Researchers recruited 14 patients with celiac disease and 14 healthy controls for the trial. They then randomly assigned each patient to receive either a 6 g gluten suspension or placebo.  Each patient completed a 100 mm visual analog questionnaire to assess their symptoms at baseline, every 30 minutes to 60 minutes for 6 hours and then daily for 3 days. 

    The researchers also asked patients at each time point if they believed they received gluten. During the study, only two of the seven celiac patients who received gluten were able to correctly identify the gluten suspension. Cartee said it took a full day for one patient to come to that conclusion, while another gave varied responses sporadically throughout the study.

    Nausea and abdominal pain were the most common symptoms for celiac patients. Interestingly, there was no statistical difference in symptoms in the gluten celiac disease group compared with the placebo celiac disease group. That is, celiac disease patients receiving the placebo reported symptoms that the same rate as those who received actual gluten. So, not only could the celiac patients not tell when they got gluten, they also couldn’t tell when they got a placebo.

    Dr. Cartee said because physical symptoms are subjective and non-specific, they are largely unreliable for self-diagnosing gluten exposure. Dr. Cartee is calling for the development of a better, more objective way to identify gluten-related symptoms, especially in celiac patients with ongoing gastrointestinal symptoms. 

    Do you have celiac disease? Would you welcome an easy reliable way to determine gluten exposure? How would you find it helpful?

    Source: Healio


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    11 hours ago, Guest Jamilah said:

    This is rather shocking! I puke my guts out after gluten injestion. Pretty sure I’d know...wish I could’ve been in the study...

    I agree with Jamilah - i have same reaction - and could set my watch by it. 

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    I do not have any symptoms when I eat gluten, only found out because of a blood test and I wasn't absorbing any vitamins. They gave me supplements for a year and when tested results were lower, that's when they tested me for celiac and sure enough it was. So how would I know when I felt perfectly normal?

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    I would know right away. I’m running to the bathroom and the I break out severely in hives all over my face arms and legs. I also get very nauseous sometimes I throw up but mostly it’s the break outs and the other end for me.   Something with my allergy to soy.  I def know when I have been.  I say be aware of how much soy u r eating in your gluten-free foods as that’s how I developed that allergy.  Know that u can get more than one autoimmune disorder once u have two or more more I was just diagnosed with my fifth. Get to know your body when u feel good and bad I’ve learned to that over the yrs of when my autoimmune disorders started 24 yrs ago. Would be awesome if there were better ways of knowing when u really were contaminated so u could get it dealt with. 

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    On 11/19/2018 at 7:35 PM, Guest Jamilah said:

    This is rather shocking! I puke my guts out after gluten ingestion. Pretty sure I’d know...wish I could’ve been in the study...

    Remember, just two out of seven people tested could identify gluten symptoms. That's almost 30%, so about 3 in 10 can tell, according to this test. Still, most would be regularly mistaken. Interesting indeed.

     

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    On 11/19/2018 at 9:35 PM, Guest Jamilah said:

    This is rather shocking! I puke my guts out after gluten injestion. Pretty sure I’d know...wish I could’ve been in the study...

    I am also a dramatic puker! How is it possible I’d miss it??? 😕

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    I also throw up after I ingest gluten, it's the worse.  Interesting though-- the University of Chicago was conducting a study (in May of 2016) and were looking for participants.  The study was surrounding a pill (called Montelukast) to treat Celicac Disease.  I called to volunteer, and the screener  asked me if I would be able to eat a piece of bread.  I said "sure, but I would throw up for a couple of hours, and doesn't everyone?"  The screener said "no, not everyone has a sever reaction."  I have numerous family members that have Celiac and we all  get very sick after eating gluten, even in small amounts.  

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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 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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