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    Celiac Patients Are Bad at Judging Gluten Exposure Based on Symptoms

    Jefferson Adams
    • 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 Patients Are Bad at Judging 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

    11 11


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    Guest Mark B

    Posted

    Some form of home test would be awesome.  I have felt terrible the last two days.  I assume I got some gluten.  It would be great if there was a way to easily tell.  

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    Guest Jamilah

    Posted

    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...

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    Guest Sue

    Posted

    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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    Guest Carol b

    Posted

    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 injestion. Pretty sure I’d know...wish I could’ve been in the study...

    Remember, two out of seven 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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    Guest Kim

    Posted

    Severe abdominal bloating, pain and diarrhea 

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    Guest Leslie

    Posted

    My symptoms are swift and severe ... a few hours of purging from both ends ... “all guns blazing,” as it were ... until I’m completely cleaned out! NO surprises! 

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    Guest GollyWampus

    Posted

    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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    Guest Kevin

    Posted

    Whenever I am exposed to gluten I will know I  about 15-20 minutes later because I cannot hold it in. I'm not talking about puking either. It sux.

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  • About Me

    Jefferson Adams 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, and science. He previously served as Health News Examiner for Examiner.com, and provided 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 Dangerous Grains by James Braly, MD and Ron Hoggan, MA.

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