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    How Much Gluten Exposure Do Celiacs Get on a Gluten-Free Diet?


    Jefferson Adams
    • 9 out of 10 people with celiac disease are being exposed to gluten when they eat out.

    How Much Gluten Exposure Do Celiacs Get on a Gluten-Free Diet?
    Image Caption: Image: CC--Stig Nygaard

    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


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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.

  • Related Articles

    Jefferson Adams
    How Often Do You Get Exposed to Gluten?
    Celiac.com 09/05/2016 - Currently, a gluten-free diet is the only recommended treatment for celiac disease. But, researchers don't know much about how effective the actually diet is, or exactly what constitutes the normal range of responses among persons with celiac disease on a gluten-free diet.
    To get a better idea, a team of researchers recently set out to study a group adults with biopsy proven, newly diagnosed celiac disease. The research team included J. A. Silvester, L. A. Graff, L. Rigaux, J. R. Walker & D. R. Duerksen, variously affiliated with the College of Medicine, University of Manitoba, Winnipeg, MB, Canada, the Celiac Research Program at Harvard Medical School in Boston, MA, USA, and the St Boniface Hospital, Winnipeg, MB, Canada.
    The team had each patient complete a survey related to diet adherence and reactions to gluten at entry and 6 months. To measure celiac disease symptoms and gluten-free diet adherence, the team used the Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT), and they assessed a total of 105 participants, 91% of whom reported gluten exposure less than once per month, and showed an average CDAT score was 9 (IQR 8–11), consistent with adequate adherence.
    Two-thirds of the subjects reported suspected symptomatic reaction to gluten. For 63% of subjects, gluten consumption was only suspected after a reaction occurred. For nearly 30%, gluten consumption was the result of eating in a restaurant. Gluten consumed came from cross-contamination in 30% of cases, and from gluten as a major ingredient in 10% of cases. On average, symptoms began an hour after gluten consumption, running from 10 minutes on the low end to 48 hours on the high end.
    On average, when symptoms did occur, they lasted about 24 hours, on average; though they ranged from 1 hour to 8 days. Common symptoms included abdominal pain in 80%, diarrhea in 52%, fatigue in 33%, headache in 30% and irritability in 29% of patients.
    Adverse gluten reactions are common in people with celiac disease on a gluten-free diet. Eating away from home, especially at restaurants and other homes, carries the greatest risk for gluten exposure.
    The team encourages doctors who treat people with celiac disease to question their patients about adverse gluten reactions as part of their assessment of gluten-free diet adherence.
    How often do you get exposed to gluten? What happens?
    Source:
    Alimentary Pharmacology and Therapeutics

    Jefferson Adams
    Are Serum Alkylresorcinols Good Biomarkers of Dietary Gluten Exposure in Celiacs?
    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
    Anti-transglutaminase 6 Antibody Development in Children with Celiac Disease Correlates With Length of Gluten Exposure
    Celiac.com 03/06/2018 - A number of clinicians and researchers have suspected that antibodies against transglutaminase 6 (anti-TG6) play a role in neurological issues in adult patients with genetic gluten intolerance, but it is not known if autoimmunity to TG6 develops after long-term consumption of gluten.
    A team of researchers recently set out to establish a correlation between these autoantibodies and the duration of gluten exposure by measuring the anti-TG6 in children with celiac disease at diagnosis. The team then investigated a correlation between anti-TG6 and the presence of neurological disorders.
    The research team included L De Leo, D Aeschlimann, M Hadjivassiliou, P Aeschlimann, N Salce, S Vatta, F Ziberna, G Cozzi, S Martelossi, A Ventura, and T Not. They are variously affiliated with the Institute for Maternal and Child Health-IRCCS "Burlo Garofolo" Trieste, Trieste, Italy; Matrix Biology and Tissue Repair Research Unit, School of Dentistry, and Arthritis Research UK Biomechanics and Bioengineering Centre of Excellence, College of Biomedical and Life Sciences, Cardiff University, Cardiff; the Department of Neurology at the Royal Hallmshire Hospital, Sheffield, UK; and with the University of Trieste in Trieste, Italy.
    The team used ELISA to measure anti-TG6 (IgA/IgG) in children with biopsy-proven celiac disease and of children experiencing gastrointestinal disorders. Celiac disease patients who tested positive for anti-TG6 were retested after 2 years of gluten-free diet. In all, the team analyzed test results for 274 children with celiac disease, along with 121 control subjects.
    They found anti-TG6 in 68 out of 274 celiac disease patients and in 19/121 control subjects, though the differences between the two groups was significant. None of the celiac patients or the controls who tested positive for anti-TG6 suffered from neurological disorders. Eleven of 18 celiac disease patients with other autoimmune diseases tested positive for anti-TG6. 
    Among the celiac disease patients, the team found a significant correlation between the gluten exposure before the celiac disease diagnosis and anti-TG6 concentration. The gluten-free diet substantially reduced the anti-TG6 concentrations. The team found no significant correlation between anti-TG6 and anti-TG2 serum concentrations.
    Anti-TG6 is much more common in children with untreated celiac disease , but with no apparent neurological disorders. The synthesis of the anti-TG6 is associated with longer exposure to gluten prior to celiac diagnosis, while the autoimmunity against TG6 is gluten dependent and disappears with a gluten-free diet.
    Source:
    J Pediatr Gastroenterol Nutr. 2018 Jan;66(1):64-68. doi: 10.1097/MPG.0000000000001642.

    Jefferson Adams
    How Much Gluten Exposure Do Celiacs Get on a Gluten-Free Diet?
    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

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    • Maureen and Cyclinglady, Of the foods you listed. . .. I would focus on the Chocolate. Chocolate has Tyramine in it and it could/can cause rashes that  might be confused for DH. Sometimes Tyramine get's confused for/in high sulfite foods as triggers. Here is a great overview article on this topic. http://www.chicagotribune.com/lifestyles/health/sc-red-wine-headache-health-0608-20160525-story.html you might also have trouble with headaches if it tyramine is causing you your trouble. People who have trouble Tyramine might also have trouble with consuming cheeses. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738414/ As for the Milk causing/triggering your DH don't rule Adult onset dairy allergy. While rare it does occur in the literature/research when you search it out. I am including the research here in the hopes it might help you or someone else entitled "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" https://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.1996.tb04640.x It is generally thought most of grow out of a Milk Allergy at approx. 3 years old. But for some lucky one (I guess) we never do apparently.  (I speak for my friend on this board JMG).  He found out he was having trouble with dairy as an adult better never realized until about 6 months ago. With delayed onset allergies it is often hard to tell if it (allergen) is effecting us because we might not associate it with our dairy consumption because it might happen a day or two latter. See this WHFoods article about food allergens/sensitivies.  It is very long/exhaustive but it is very helpful if you have time to study it in more detail. http://www.whfoods.com/genpage.php?pfriendly=1&tname=faq&dbid=30 I will quote some key points for your information. Symptoms of Food Allergies "The most common symptoms for food allergies include vomiting, diarrhea, blood in stools, eczema, hives, skin rashes, wheezing and a runny nose. Symptoms can vary depending upon a number of variables including age, the type of allergen (antigen), and the amount of food consumed. It may be difficult to associate the symptoms of an allergic reaction to a particular food because the response time can be highly variable. For example, an allergic response to eating fish will usually occur within minutes after consumption in the form of a rash, hives or asthma or a combination of these symptoms. However, the symptoms of an allergic reaction to cow's milk may be delayed for 24 to 48 hours after consuming the milk; these symptoms may also be low-grade and last for several days. If this does not make diagnosis difficult enough, reactions to foods made from cow's milk may also vary depending on how it was produced and the portion of the milk to which you are allergic. Delayed allergic reactions to foods are difficult to identify without eliminating the food from your diet for at least several weeks and slowly reintroducing it while taking note of any physical, emotional or mental changes as it is being reintroduced." Here is their information on Tyramine's. Tyramine "Reactions to tyramine (an amino acid-like molecule) or phenylalanine (another amino acid-like molecule) can result from eating the following foods: Fermented cheeses Fermented Sausage Chocolate Sour Cream Red wine Avocado Beer Raspberries Yeast Picked Herring Symptoms of tyramine intolerance can include urticaria (hives), angioedema (localized swelling due to fluid retention), migraines, wheezing, and even asthma. In fact, some researchers suggest that as many as 20 percent of migraines are caused by food intolerance or allergy, and tyramine intolerance is one of the most common of these toxic food responses." Here is an old thread on tyramine and especially how it can trigger headaches. https://www.celiac.com/forums/topic/95457-headache-culprit-is-tyramine/ I would also suggest your research a low histamine food diet.  Rashes/hives etc. can be triggered my disregulaton of histamine in the body. The other thing in chocolate that might be causing your problems is Sulfites. Here is a website dedicated to a Sulftie allergy. http://www.allergy-details.com/sulfites/foods-contain-sulfites/ Chocolate bars are on their list of sulfite contaning foods but probably most noted in dried fruits and red wine. Knitty Kitty on this board knows alot about a sulfite allergy. I want to go back to the possible dairy allergy for a second as a possible trigger. . .because it has been established as connected to DH . . .it is just not well known. Here is current research (as I said earlier) most dairy allergies are studied in children but it does occur in approx. 10 pct of the GP unless your of Asian descent where it is much more common. https://www.ncbi.nlm.nih.gov/pubmed/29555204 quoting the new research from this year on children. "When CMP (Cow's Milk Protein) was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again." and if adults can also (though rarely) it seem develop "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" (see research linked above) as the research shows  you should at least trial removing dairy from your diet if you haven't already and see if your DH doesn't come back when you re-introduce it. It just takes 15 or 20 years for medical doctor' to incorporate new research/thinking into clinical practice.  And note the research on this happening in adults is 20+ years old and as far I know doctor's . . . are not aware of this.  I know I wasn't until recently and I research things alot of to help myself and my friends. But I know you can't do what you don't know about.  So this is why I am trying to share what I learned so that other might be helped and this research might not  lay hidden another 20 years before doctor's and their Celiac/DH patients become aware of it. And if it helps you come back on the board and let us know so it can help others too! If it helps you it will/can help someone else! if they know it helped you then they will/can have hope it might help them too and why I share and research these things for others'. . . who don't know or don't have time to research this for themselves. I hope this is helpful but it is not medical advice. Good luck on your continued journey. I know this is a lot of information to digest at one time but I hope at least some of if it helpful and you at least have a better idea of what in your chocolate could be causing your DH (idiopathic) as the doctor's say (of an unknown cause mild) DH symptom's. Or at least it is not commonly known yet that Milk can also cause trigger (DH) in children and adults who have a Milk allergy undiagnosed. . .because we don't don't typically think  or associate it with adults like maybe we should if we are not of Asian descent. Maureen if this doesn't help you you might want to start a thread in the DH section of the forum. As always  2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
    • I hooe you can get some answers with your new GI doc.
    • Many of us deal with doctor issues and diagnosis, you got a really bad draw indeed. Most doctors dismiss Celiac as their is no money in the cure for them IE a gluten free diet and not medications.

      Keep up updated on your new doctor and testing, good to see you finally found one that listens and can help, I got through on doc #5 I think it was.
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