Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up
  • Scott Adams
    Scott Adams

    How Common is Gluten Exposure in Patients with Celiac Disease on Gluten-Free Diets?

    Reviewed and edited by a celiac disease expert.

    Nearly 90% patients had at least one fecal or urine sample that was positive for gluten immunogenic peptides.

    How Common is Gluten Exposure in Patients with Celiac Disease on Gluten-Free Diets? - Image: CC BY-SA 2.0--Ark. Agricultural Experiment Station
    Caption: Image: CC BY-SA 2.0--Ark. Agricultural Experiment Station

    Celiac.com 04/09/2020 - Anyone with celiac disease knows how hard it can be to follow a gluten-free diet. Some studies have shown that even celiacs who strive to stay gluten-free are commonly exposed to gluten. How common is gluten-exposure in celiacs who are following a gluten-free diet? A new study takes a deeper look at real world gluten exposure in celiac patients following a gluten-free diet.

    To do so, the research team set out to measure levels of gluten immunogenic peptides (GIP) in fecal and urine samples from celiac patients on a gluten-free diet.



    Celiac.com Sponsor (A12):






    Celiac.com Sponsor (A12-m):




    The research team included Juan Pablo Stefanolo, Martín Tálamo, Samanta Dodds, María de la Paz Temprano, Ana Florencia Costa, María Laura Moreno, María Inés Pinto-Sánchez, Edgardo Smecuol, Horacio Vázquez, Andrea Gonzalez, Sonia Isabel Niveloni, Eduardo Mauriño, Elena F. Verdu, Julio César Bai. They are variously affiliated with the Dr. C. Bonorino Udaondo Gastroenterology Hospital, Buenos Aires, Argentina; the Farncombe Family Digestive Health Research Institute, McMaster University Medical Centre, Health Sciences, Hamilton, ON, Canada; and the Research Institutes of Health, Universidad del Salvador, Buenos Aires, Argentina.

    The team conducted a prospective study of 53 celiac adults in Argentina who had followed a gluten-free diet for more than two years, and an average of eight years.

    The team used a celiac symptom index questionnaire to assess celiac-related symptoms for each patient at the beginning of the study. Patients in the study collected stool each Friday and Saturday and urine samples each Sunday for one month. The team used a commercial ELISA to measure gluten immunogenic peptides in stool and point-of-care tests to measure gluten immunogenic peptides in urine samples.

    Among other revelations, the results showed that nearly 40% of stool and urine samples were positive for gluten immunogenic peptides. Nearly 90% patients had at least one fecal or urine sample that was positive for gluten immunogenic peptides (median, 3 excretions). Nearly 70% of urine samples were positive for gluten immunogenic peptides at least once. 

    Positive gluten immunogenic peptides samples correlated with blood levels of deamidated gliadin peptide IgA, but not with levels of tissue transglutaminase. Interestingly, symptomatic patients had more weeks with detectable gluten immunogenic peptides in stool than patients without symptoms. 

    Patients with celiac disease on a long-term gluten-free diet are still frequently exposed to gluten. Tests to measure gluten immunogenic peptides in stool and urine could help dietitians ensure gluten-free diet compliance. In their celiac patients.

    In this real world study, nearly nine out of ten celiacs who are following a gluten-free diet tested positive for gluten exposure at least once in this study, and nearly two out of five urine tests was positive for gluten exposure. Moreover, these exposures may not have symptoms. This is pretty alarming news, to be honest. People with celiac disease need to avoid gluten, and they need a reliable way to check and see if they need to adjust their diet.

    Do you have celiac disease? Are you on a gluten-free diet? Do you think you get exposed to gluten regularly? Do you think that regular testing might help you to avoid gluten? Comment below.

    Read more in the Clinical Gastroenterology and Hepatology

    Edited by Scott Adams



    User Feedback

    Recommended Comments



    After my Celiac diagnosis more than a decade ago I've had a perfect track record of not just thinking' What the heck!' and wolfing down food I know contains gluten, and I've educated myself on the sources people normally wouldn't expect.
    It would be a good thing to know the average unintended exposure a person might get and the threshold before auto-immune damage begins to occur.
    The idea of an enzyme pill taken before a trip to a restaurant is one I've seen here before, something like that would go a long way towards allowing Celiac patients a better quality of life.

    Link to comment
    Share on other sites

    I was diagnosed in 2005.  I have only twice in 15 years knowingly ingested gluten and yet I know that I am regularly exposed.  I am extremely careful at home and when I dine out.  I read every label and all research.  I have annual colonoscopies(many polyps), and endoscopes every 2-3 years due to my difficulty with weight loss.  It is very frustrating.

    Link to comment
    Share on other sites
    On 4/9/2020 at 4:20 PM, Guest Hank said:

    After my Celiac diagnosis more than a decade ago I've had a perfect track record of not just thinking' What the heck!' and wolfing down food I know contains gluten, and I've educated myself on the sources people normally wouldn't expect.
    It would be a good thing to know the average unintended exposure a person might get and the threshold before auto-immune damage begins to occur.
    The idea of an enzyme pill taken before a trip to a restaurant is one I've seen here before, something like that would go a long way towards allowing Celiac patients a better quality of life.

    Yes, this is exactly the reason for AN-PEP / GliadinX.

    It appears that the threshold is not the same for all people. For some it is 200ppm and for some as low as 5ppm but unfortunately it is hard to figure it out. 

    Link to comment
    Share on other sites

    I have been super strict gluten free since diagnosed 10.5 years ago but my husband still has gluten foods in the house. I’ve had two episodes of gluten exposure at restaurants that made me horribly sick and sent me to the emergency room. After going gluten-free, I still experienced gut problems and eventually found a dietitian nutritionist who helped me identify a bunch of other foods to avoid, including lactose. Now, I have one dish at one restaurant that I can eat. So, I go out to eat rarely and I can’t travel except to camp and make my own food. All of that said, I still notice that I am being exposed to gluten, probably small amounts. This could be from my husband’s food, cooking utensils, or drugs. We do keep separate toaster ovens and towels. It’s a constant battle of hyper vigilance.

    Link to comment
    Share on other sites

    As with others here, I have been on GFD for 12 years.  Extensive mineral deficiencies led to diagnosis, though I had no severe acute reactions to gluten until 1-2 years after going strictly gluten free.  I travel for work about 40%-60% of the year, riding on 80-110 airplanes a year.  This translates into a similar percentage of my meals being eaten in restaurants. (I lost the enjoyment of eating out years ago due to the stress experienced evry time I go into an eating eatablishment.) 

    When I have a gross exposure, 1 to 3 times per year, it is always due to restaurant food mis-identified as gluten-free, or ignorant staff making false assertions about items being gluten free.  Extreme nuasea, sweating, and vomiting occurs within about an hour of ingestion.  Several years ago, I started carrying Zofran in my computer bag, which follows me like a loyal puppy on the road.  When I am made aware of the gluten poisoning after the fact, I take one and it will keep me from throwing up.  Even if I am not made aware, it can still stave off the vomiting if I can dissolve in my mouth early enough at the onset.  In both cases, I still feel effects for a couple days after, though it is not debilitating.  

    What concerns me with this article, is the obvious implication that I am repeatedly exposed at levels less than my personal acute symptomatic threshold. The only "plus side" to this is not getting violently ill.  I have to assume that there is some level of underlying damage being done when I am exposed at levels under this threshold. 

    Are there any studies out there that have examined the potential damage that can be done in these periodic acute exposures, in addition to the assumed high level of non-symptomatic background exposures?   

    Link to comment
    Share on other sites

    I have been in the hospital 7 times in the last year and a half for issues of falling and creaming my head; no diet problems there, and they have the best tasting gluten-free bread.  After each hospitalization, I had to go to a nursing home for rehabilitation; that's where the problems were. I was in 5 different places; each time I told them I needed to be on a gluten free diet. It never happened. There were some places that were better than others, but all gave me problems.  Now I'm in an assisted living facility--still having the same problems.  Sometimes, I can take most of the breading off of the meat, and other times I can't. Often both menu items contain pasta. I can order a big salad or a cheeseburger (no bun) or chicken salad (with my own crackers), but those three items get boring after a while.  I can get a few frozen entries to  fix in my room, but I can only afford to do that once or twice a month. 

    I just read the Easter Candy article, and found out that one of the candies I considered safe, isn't.  Just one more thing I can't eat. :-(  That's why I was breaking out a few weeks ago.

     

     

    Link to comment
    Share on other sites
    On 4/13/2020 at 2:36 PM, docaz said:

    Yes, this is exactly the reason for AN-PEP / GliadinX.

    It appears that the threshold is not the same for all people. For some it is 200ppm and for some as low as 5ppm but unfortunately it is hard to figure it out. 

    Does you or anyone else have experience with using this?? I’ve thought about ordering it but didn’t know if it was a complete joke. I only eat out every few months at places I’m certain are 90% safe...hard to say as sometimes I think I had a reaction that was less intense but then I wonder if it’s in my head!! ?it would still be nice to have if it works. 

    Link to comment
    Share on other sites

    I have used it on and off for a few years when trying something not labeled, new, or from a shared facility. ...no major signs of exposure. I recently had to make it a daily regiment as I am having to turn to local brands for some foods that are made on shared facilities I do not trust and I found I tend to also digest some other foods better with it that are gluten free anyway....thinking of just staying on it.

    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.   Restore formatting

      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

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):




  • Related Articles

    Jefferson Adams
    Celiac.com 01/26/2017 - The only currently effective therapy for celiac disease is for patients to follow a gluten-free diet. However, no serum marker for gluten intake has yet been found, so it's not always easy for doctors to tell if patients are following their diets properly.
    A team of researchers recently set out to evaluate the use of alkylresorcinol concentrations for detecting dietary gluten intake in humans and mice.
    The research team included R. S. Choung, J. A. Murray, E. V. Marietta, C. T. Van Dyke, and A. B. Ross. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA, and with the Department of Biology and Biological Engineering, Chalmers University of Technology in Gothenburg, Sweden.
    For their study, they compared alkylresorcinol concentrations among 34 treated patients with celiac disease, 36 untreated celiac disease patients and 33 control subjects. They also evaluated seven additional celiac disease patients whose serum samples were available at diagnosis and after gluten-free diet.
    In mice, they compared alkylresorcinol concentrations in the serum of five mice fed a regular chow, and 10 mice fed lifelong with a gluten-free chow. In addition, They also assessed the effect of added gluten on alkylresorcinol concentrations.
    Their study indicates that serum alkylresorcinol concentrations could be a useful marker for dietary gluten in celiac disease.
    Certainly, having an easy, reliable way for doctors to spot dietary gluten will be useful in helping people with celiac disease maintain their required gluten-free diets.
    Source:
    Alimentary Pharmacology & Therapeutics. DOI: 10.1111/apt.13917


    Jefferson Adams
    Celiac.com 09/10/2018 - Anyone diagnosed with celiac disease needs to eat a gluten-free diet if they hope to see their condition improve, and not lead to worse outcomes. So, how much gluten exposure do celiacs get on a gluten-free diet?
    William F. Balistreri, MD, Director Emeritus, Pediatric Liver Care Center; Medical Director Emeritus, Liver Transplantation at Cincinnati Children's Hospital in Cincinnati, Ohio presented data at this year's Digestive Disease Week that focused on the challenges celiac patients face in trying to follow a gluten-free diet. 
    Gluten-free standards and labels help improve awareness, but even so, eating gluten-free can be a challenge. Anyone with celiac disease can tell you that the chances of accidental gluten contamination are many, and that consent vigilance is required.
    Even ”gluten-free foods" are not always free from variable amounts of gluten, whether by imprecise food production, processing, packaging, or preparation.  Accidental gluten exposure can also come via non-foods, such as lipstick, shampoo, toothpaste and the like. Regular, low-level gluten exposure can cause many celiac patients to have mucosal inflammation despite maintaining a gluten-free diet.
    Product by product, gluten levels are generally well-known, but not much is known about how much gluten exposure levels in people with celiac disease who are following a gluten-free diet. Such information could be quite helpful in designing disease management and patient follow-up strategies.
    Gluten immunogenic peptide (GIP) analysis provides direct and quantitative measurement of gluten exposure, has proven useful in diagnosis and clinical management of non-responsive or refractory celiac patients. To figure out the amounts of gluten ingested by highly motivated, educated celiac patients following a gluten-free diet, the research team measured levels of GIPs in food, urine, and stool. They noted the connections between gluten exposure and persistent villous atrophy or related conditions. 
    The study also analyzed food samples from restaurant “doggie bags" saved by the study subjects. The team detected gluten in at least one food sample from nearly 90% of patients consuming a gluten-free diet. That indicates that nearly nine out of ten people with celiac disease, who are trying hard to follow a gluten-free diet, as being exposed to gluten when they eat out.
    Overall, approximately 33% of food samples tested positive for GIPs above 20 ppm, and the estimated GIPs ingested ranged from 0.23 mg to > 40 mg per exposure.
    This new information confirms what many people with celiac disease have long suspected. Namely, that avoiding gluten is really hard to do, even for who are highly aware of gluten-related celiac disease issues, and who work hard to avoid gluten.
    Read more at: Medscape.com


    Jefferson Adams
    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


    Jefferson Adams
    Celiac.com 02/24/2020 - Low FODMAP gluten and sham challenges show that nausea and vomiting after a meal are key signs of acute gluten ingestion, and reflect an active immune reaction in celiac patients who are otherwise following a gluten-free diet.
    This became clear recently after a team of researchers set out to establish acute gluten-specific symptoms linked to immune activation in celiac disease.
    The research team included A. James M. Daveson; Jason A. Tye-Din; Gautam Goel; Kaela E. Goldstein; Holly L. Hand; Kristin M. Neff; Leslie J. Williams; Kenneth E. Truitt; and Robert P. Anderson.
    They are variously affiliated with the Faculty of Medicine, University of Queensland, Brisbane in Queensland, Australia; the Immunology Division, The Walter and Eliza Hall Institute, Parkville, Vic., Australia; the Department of Medical Biology, University of Melbourne, Parkville, Vic., Australia; the Department of Gastroenterology, The Royal Melbourne Hospital, Parkville, Vic., Australia; the Centre for Food & Allergy Research, Murdoch Children's Research Institute, Parkville, Vic., Australia; the ImmusanT, Inc., Cambridge, MA, USA.
    For some people with celiac disease, FODMAPs in gluten-containing foods can trigger anxiety about a potentially harmful 'nocebo' effect, which can lead to acute symptoms after a gluten challenge.
    The team enrolled 36 celiac disease patients on a gluten-free diet who received placebo in the RESET CeD trial.  The team put each of the study subjects through a course of double-blind, bolus vital wheat gluten and sham challenges that were both low in FODMAPs with two weeks between courses. 
    The team measured daily Celiac Disease Patient Reported Outcome (CeD PRO) symptom scores on a scale of 0–10, adverse events and serum interleukin-2, at both baseline and 4 hours).
    The highest increase was seen in average CeD PRO score for nausea, with sham challenge score of 0 vs gluten challenge score of 5.5. 
    Apart from tiredness and headache, changes in other symptoms were small or absent. Only nausea increased significantly in occurrence with gluten. Without nausea, only tiredness and flatulence were common after gluten. 
    Nausea and vomiting were the only adverse events more common with gluten than sham. Nearly all of the patients fed gluten showed raised levels of Interleukin-2, which corresponded to the severity of the nausea and the presence of vomiting.
    These low FODMAP gluten and sham challenges show that nausea and vomiting after a meal are key signs of acute gluten ingestion, and reflect an active immune reaction in celiac patients who are otherwise following a gluten-free diet. However, IBS-like symptoms without nausea are unlikely to indicate recent gluten exposure.
    Lastly, these findings indicate that FODMAPs may be an issue for many people with celiac disease. Many celiacs on a gluten-free diet, who think that they are having issues with gluten, might actually be reacting to FODMAPs, and may benefit from a FODMAP elimination diet.
    Read more in Alimentary Pharmacology & Therapeutics; 2020;51(2):244-252.


  • Popular Now


  • Celiac.com Sponsors (A19):


  • Member Statistics

    • Total Members
      95,053
    • Most Online
      6,255

    Snookie
    Newest Member
    Snookie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      116,623
    • Total Posts
      975,788

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)


  • Celiac.com Sponsor (A22):


  • Popular Articles

  • Recent Activity

    1. 6

      Head ache after eating

    2. 23

      Allergist recommendations? Anyone?

    3. 7

      3 yo daughter possible celiac, my Mom hear just needs some clarity! Help!? Scope Wednesday

    4. 69

      are you going to take the vaccine

    5. 69

      are you going to take the vaccine

×
×
  • Create New...