Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • 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


    User Feedback

    Recommended Comments



    The article said the study was small. From what I've learned, all respond differently to exposure. However, one would think, if a person with celiacs has ingested gluten, they would know. I know but my symptoms are different and have taken a good year to figure out the cycle. 

    Share this comment


    Link to comment
    Share on other sites

    I really wish research would focus on a method to determine if gluten is in the food we are about to eat.  A litmus paper?  But if that is not possible, then an accurate saliva or stool sample to keep watch on whether we are getting gluten.  The focus on a vaccine or something that will allow us to eat food that may have bits of gluten would not be my first choice (I guess that would be similar to us taking Lactaid since we cannot produce the enzymes needed)...

    Rather than turn us into a pill popping bunch, I hope someday we can just reliably know if we are eating untainted food.  

    As for the study, 14 people doesn't sound like a large study.  And, were the celiac group all symptom-free to begin with, intestines healed, and stable on a gluten-free diet (so that any reactions would stand out as new) or were their intestines still in the healing stage?   

    Share this comment


    Link to comment
    Share on other sites

    I too am one of those who did not know they had Celiac's or even suspected it based on gastro symptoms. It was discovered "accidentally" through an upper GI endoscopy for an unrelated reason. I had no idea that something was amiss until AFTER they did a biopsy and blood work (TTG > 100 for me)...since that diagnosis 18 months ago and being gluten-free since then other issues I was having (neuropathy) have subsided but as I never really experienced serious gastro symptoms I am pretty sure that I would not notice if I ate something "contaminated" with gluten. Despite being careful, I really would like a quick and cheap way to confirm some things before I eat them!

    Share this comment


    Link to comment
    Share on other sites
    On 11/19/2018 at 7:50 PM, Guest Mark B said:

    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.  

     

    On 11/21/2018 at 6:33 AM, catherine abercromby said:

    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?

    No symptoms at all for me either. No suppliments taken.   But going gluten-free reduced my blood numbers from astronomical to normal in 5 months. gluten-free worked for me.  Diagnosed with Celiac 6 months ago.

    Share this comment


    Link to comment
    Share on other sites
    3 hours ago, Guest Jenny said:

    I really wish research would focus on a method to determine if gluten is in the food we are about to eat.  A litmus paper?  But if that is not possible, then an accurate saliva or stool sample to keep watch on whether we are getting gluten.  The focus on a vaccine or something that will allow us to eat food that may have bits of gluten would not be my first choice (I guess that would be similar to us taking Lactaid since we cannot produce the enzymes needed)...

    Rather than turn us into a pill popping bunch, I hope someday we can just reliably know if we are eating untainted food.  

    As for the study, 14 people doesn't sound like a large study.  And, were the celiac group all symptom-free to begin with, intestines healed, and stable on a gluten-free diet (so that any reactions would stand out as new) or were their intestines still in the healing stage?   

    They have the Nima, and EZ-Gluten for testing foods, it is hit and miss, you need a varied sample including the parts that touched the cooking surfaces, and multiple ingredients. These work best with blended meals, soups, stews, and testing the bulk spices, flours, etc each before being combined so you can get a bit of each....I test bulk samples of food used in my catering and personal food this way.

    They have something called Gluten Detective, that uses stool and urine samples to test to see if you really have consumed any gluten.

    They have GlidenX a enzyme that breaks down gluten...it can reduce the amount that makes it through the tract and minimize the reactions and limit down time...not a miracle pill but at least it helps a bit.


    Over all I must say, I have to write down my symptoms, I have many other health issues and gluten is not my only enemy as I imagine it is for many celiacs. We do not always know if it was gluten or something else we reacted to....I can get pain, and vomiting from other things, but my ataxia is a gluten only reaction but requires a decent amount to trigger. Early on before finding my other food issues....I blamed gluten for everything wrongly...did not know then of the issues with other foods.

    Another thing to consider is many celiacs have much less reactions or no reactions and it only shows up mildly or days later. Finding out what caused it can tricky for them.

    Share this comment


    Link to comment
    Share on other sites

    I get severe abdominal pain, body aches & a headache within hours; I also have the same reaction with rice, so I avoid that and the so-called "gluten free" food they sell in the grocery & health food stores as most of them contain rice flour. If those placebos had rice flour in them it is possible that the people that got them could also be rice intolerant.

    Share this comment


    Link to comment
    Share on other sites

    Yes, I wish there were some sort of home tests or Nima sensors etc. that insurance would pay for!

    I don't have vomiting or diarrhea but I feel terrible, can't get out of bed, have terrible headaches from time to time and no way of knowing if I was exposed to gluten or reacting to trace gluten or something else all together.

    Share this comment


    Link to comment
    Share on other sites

    I start feeling it about 1.5 hours after ingestion, then at around the two hour mark I start vomiting and go into shock...passing out, sweating, fireworks are going off in my head.  Takes me until the next day to recover and I am just worn out.  Last time it was so bad my significant other was ready to call 911. He thought I was going to lose consciousness.  It is just SO miserable.

    Share this comment


    Link to comment
    Share on other sites
    On 11/21/2018 at 12:30 PM, Guest Carol b said:

    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. 

    Hives suggests you have dermititis herpitformis as well as coeliac disease. Interesting.

    Share this comment


    Link to comment
    Share on other sites

    I also have DH, so if I ingest gluten, within 20-30 minutes I am itching and feeling stinging situation that continues into breakouts. I usually go ahead and take benedryl to somewhat calm it, but will still have skin issues for days, just less intense. The digestive issues come 10-12 hours later usually.

    Share this comment


    Link to comment
    Share on other sites

    I also know almost immediately if I've ate gluten. I get horrible but pain, very nauseous and my even vomit of it's enough. I also get flushed and my whole demeanor changes moments after. But apparently we have no idea?? I think it all depends on your sensitivity level. 

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • 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.

×
×
  • Create New...