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  • Jefferson Adams
    Jefferson Adams

    How Much Gluten Does an Average Celiac Patient Accidentally Consume?

      A new study shows that many gluten-free people with celiac disease are exposed to low levels of gluten that can trigger symptoms and cause gut damage.

    Celiac.com 04/02/2018 - Exactly how hard is it for people with celiac disease to faithfully follow a gluten-free diet? Anyone who’s ever tried to completely avoid gluten for any length of time likely has a story to tell about accidental gluten consumption, and the consequences that follow. It’s not at all uncommon for gluten-free celiacs to be exposed to low levels of gluten that can trigger symptoms and cause persistent intestinal histologic damage.

    To gain an understanding of gluten consumption across a wide population of celiac patients, a team of researchers recently set out to determine how much gluten people eat when they are trying to follow a gluten-free diet. 

    The team included Jack A Syage, Ciarán P Kelly, Matthew A Dickason, Angel Cebolla Ramirez, Francisco Leon, Remedios Dominguez, and Jennifer A Sealey-Voyksner. They are variously affiliated with ImmunogenX in Newport Beach, CA, the Beth Israel Deaconess Medical Center at Harvard Medical School in Boston MA, and with Biomedal in Seville, Spain.

    The team began by analyzing data from previous clinical studies. That meta-analysis focused on data from a clinical study of gluten in stool and urine in celiac patients, a second study on non-celiac populations; and an analysis of data from trials for the investigational therapeutic latiglutenase. 

    As part of the stool and urine studies the team included controlled gluten challenges. They then applied a calibration factor that allowed normal ingestion of gluten to be computed from the urine and stool measurements. They determined gluten consumption by estimating how much gluten was eliminated from patients’ diets due to a trial effect that resulted in improved histology, even in the placebo group.

    Using the stool test, the team estimated the average inadvertent exposure to gluten by celiac disease individuals on a GFD to be about 150–400 mg/d, while they estimated the median exposure to be about 100–150 mg/d. Using the urine test, those numbers showed an average exposure of about 300–400 mg/d, with a median of about 150 mg/d. 

    Meanwhile, data analyses showed that celiac patients with moderate to severe symptoms showed that patients ingested substantially more than 200 mg/d of gluten.

    The data indicate that many gluten-free celiacs regularly consume enough gluten to trigger symptoms and perpetuate gut damage.

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    I wonder how much is contamination from “facilities that also process wheat”.  I hate that warning on products that should naturally have no gluten.  gluten-free trail mix is especially hard to find in my area, which is ridiculous.  

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    I was diagnosed with Celiac in 2003. I followed a gluten-free diet for 14 years, but was still frequently sick with gluten symptoms. Last year in March of 2017, I went entirely GRAIN free, and began the very intensive elimination diet promoted by Sarah Ballantyne, the Paleo Mom, called the "Autoimmune Protocol". I am happy to say that not only am I symptom free of the usual Gluten issues, I have also resolved a number of other long standing issues including joint pain.  I will never eat any grain again.

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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, science, and advanced research, and scientific methods. He previously served as 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.

  • Related Articles

    Kristen Campbell
    Celiac.com 01/03/2009 - Recently on a gluten-free forum, I found a post asking for advice on what to do after a woman had accidentally consumed a large amount of gluten.  After unknowingly eating from her daughter’s takeout box, the woman had realized her mistake and was simply devastated to have broken her diet and subjected herself to the old, too-familiar symptoms that were on their way.
    It was interesting reading the various responses, which resulted in a debate over whether or not to induce vomiting, drink pineapple juice, take enzymes or engage in a certain illegal activity.  In all the debate, the woman eventually disappeared off the forum, which probably meant that she took some action or another, though I never heard the final result.
    This whole subject inspired some research on my part.  I first consulted my extensive gluten-free library, which led me to one solitary, repetitive answer: do not eat gluten.  In a world where doctors and authors alike are so concerned that their advice on the subject will lead people with gluten sensitivities to forgo a gluten-free diet in favor of a “band aid” of sorts, that finding a documented recommendation is near impossible.
    These experts are right to reinforce the importance of maintaining a gluten free lifestyle, and the fact that there is no “cure” for gluten intolerance and celiac disease (other than complete avoidance of gluten from wheat, barley and rye).  But mistakes do happen, and from time to time people do get "glutened,” and when they do, which action is best?
    No matter what the size is of the offending dose of gluten, all experts agree, inducing vomiting is too dangerous and disruptive to the body to be considered.  But there is one option that at least two noted experts in field of celiac research agree upon: enzymes.
    When I contacted the renowned Dr. Kenneth Fine of EnteroLab, and asked him if perhaps a dose of enzymes that are designed to break down gluten might help, he had this to say: “The good news is that everyone will survive and recover from the gluten exposure.  The enzymes you mention might help, but not completely, unless they consumed at the same time (as the gluten) for best results.”  And like all good doctors, he did go on to warn, “Avoidance is still the best policy.”
    Shari Lieberman, PhD, CNS, FACN and author of The Gluten Connection very humbly admits that “gluten slips happen.”  She also devotes a couple of pages in her book to research conducted using digestive enzymes to help manage those occasions when gluten does make its way into your diet, citing a research example in which “The study demonstrates that enzyme therapy can substantially minimize symptoms in people with celiac disease who are exposed to gluten.” 
    The enzyme used in this study does not seem to be currently available, but other gluten enzymes are at your local health food store.  I contacted one company in regard to their product, which according to them helps to reduce inflammation caused by the introduction of gluten in an individual with celiac disease or gluten intolerance.  According to them their enzymes will not prevent all damage, but may reduce some inflammation and help the body to better digest the protein.
    Ultimately, gluten sensitive individuals should recover from one accidental “gluten slip” here and there, and keeping some digestive enzymes handy to help cope with such an accident is not a bad idea.  But do keep in mind that repeated offenses, even the most minute, will damage your body and prevent it from healing.  Enzymes help treat the symptoms, but only complete avoidance of gluten can treat the disease.


    Jefferson Adams
    Celiac.com 02/07/2017 - There's been a great deal of excitement, and plenty of confusion, among celiac sufferers about a drug that breaks down gluten into harmless smaller molecules. The good news is that the drug, GluteGuard, has shown some early promise in treating gluten intolerance in randomized human trials. The enzyme supplement currently available through Glutagen's website, and registered in Australia as a "listed complementary medicine".
    The bad news is that the drug is not designed as a cure for people with celiac disease, and even the company that makes the drug has concerns about exaggerated reports of how widely it can be used.
    The maker, Glutagen, claims that:
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    GluteGuard is based on the papaya enzyme, caricain, which not only reduces gluten to smaller molecules, but further breaks down those products that negatively impact individuals affected by gluten.
    The company recently sought to clarify confusion among people with celiac disease by issuing a statement that reads in part: "The manufacturer of GluteGuard, Glutagen, advises the supplement is not a treatment or cure for coeliac disease and it is essential that people with coeliac disease maintain a strict gluten free diet." 
    Bottom line is that if you have celiac disease, you must maintain a strict gluten-fee diet, and never willingly eat gluten, no matter what kind of supplements you take. Hoever, it you regularly travel or eat outside of your home it may be a good idea to use this supplement.
    Celiac.com will be among the first to announce any kind of cure or change to celiac disease treatment that might change that. Until then, stay tuned, and stay informed.
    Read an important notice regarding GluteGuard for people with celiac disease: Celiac.org.au
     
    This article was revised by Celiac.com on 11/02/2017 to address concerns that were raised by GluteGuard.

    Jefferson Adams
    Can Gene Cells Reveal Extent of Celiac-Related Gut Damage?
    Celiac.com 06/27/2017 - What can gene cells tell us about potential gut damage in people with celiac disease? Can they be harnessed to paint an accurate picture of what's going on in the gut?
    A team of researchers recently set out to study autoimmunity and the transition in immune cells as dietary gluten induces small intestinal lesions. Specifically, they wanted to know if a B-cell gene signature correlates with the extent of gluten-induced gut damage in celiac disease.
    The research team included Mitchell E. Garber, Alok Saldanha, Joel S. Parker, Wendell D. Jones, Katri Kaukinen, Kaija Laurila, Marja-Leena Lähdeaho, Purvesh Khatri, Chaitan Khosla, Daniel C. Adelman, and Markku Mäki.
    They are variously affiliated with the Alvine Pharmaceuticals, Inc, San Carlos, California, the Department of Chemistry, Stanford, California, the Institute for Immunity, Transplantation and Infection, Stanford, California, the Division of Biomedical Informatics, Department of Medicine, Stanford, California, the Department of Chemical Engineering, Stanford, California, the Stanford ChEM-H, Stanford University, Stanford, California, the InterSystems Corporation, Cambridge, Massachusetts, the Lineberger Comprehensive Cancer Center, Chapel Hill, North Carolina, the Department of Genetics, University of North Carolina, Chapel Hill, North Carolina, the EA Genomics, Division of Q2 Solutions, Morrisville, North Carolina, the Tampere Center for Child Health Research, Tampere, Finland, the University of Tampere Faculty of Medicine and Life Sciences, Tampere, Finland, the Department of Pediatrics, Tampere, Finland, the Department of Internal Medicine, Tampere, Finland, Tampere University Hospital, Tampere, Finland, and with the Division of Allergy/Immunology, Department of Medicine, University of California San Francisco, San Francisco, California.
    The team looked at seventy-three celiac disease patients who followed a long-term, gluten-free diet. Those patients ingested a known amount of gluten daily for 6 weeks. Prior to the study, the team took a peripheral blood sample and intestinal biopsy specimens, then did the same after 6 weeks of gluten challenge.
    To accurately quantify gluten-induced intestinal injury, they reported biopsy results on a continuous numeric scale that measured the villus-height–to–crypt-depth ratio.
    As patient gut mucosa remained either relatively healthy or else deteriorated under the gluten challenge, the team isolated pooled B and T cells from whole blood, and used DNA microarray to analyze RNA for changes in peripheral B- and T-cell gene expression that correlated with changes in villus height to crypt depth.
    As is often the case with celiac disease, intestinal damage from the gluten challenge varied considerably among the patients, ranging from no visible damage to extensive damage. Genes differentially expressed in B cells correlated strongly with the extent of gut damage. Increased B-cell gene expression correlated with a lack of sensitivity to gluten, whereas their decrease correlated with gluten-caused mucosal damage.
    The the correlation with gut damage was tied to a core B-cell gene module, representing a subset of B-cell genes analyzed.
    In patients with little to no intestinal damage, genes comprising the core B-cell module showed an overall increase in expression over the 6 week period.
    This suggests that B-cell immune response in these patients may be a reaction to promote mucosal homeostasis and circumvent inflammation.
    The idea that B-cell gene signature can reveal the extent of gut damage in celiac patients is intriguing. Clearly more research is needed to determine how this revelation might be harnessed to improve the evaluation and treatment of celiac disease.
    Source:
    Cell Mol Gastroenterol Hepatol. 2017 Jul; 4(1): 1–17. Published online 2017 Jan 28. doi: 10.1016/j.jcmgh.2017.01.011. PMCID: PMC5413199

    Dr. Jennifer Sealey Voyksner
    ImmunogenX Continues Developing New Treatment Options for Celiac Disease
    Celiac.com 08/11/2017 - We are very pleased to provide an exciting update on our progress on bringing our therapeutic drug "latiglutenase" and our diagnostic disease management tool "CypCel" to market for patients suffering with celiac disease.
    ImmunogenX is a clinical-stage company founded by dedicated scientists committed to bettering the lives of celiac disease patients. We are focused on celiac disease therapy, disease management and food safety. We acquired the assets of Alvine Pharmaceuticals in 2016 and are marching ahead with great confidence and enthusiasm and plan to start our final Phase 2 trial for latiglutenase later this year.
    Latiglutenase is a natural product, a mixture of two gluten-specific enzymes that break down gluten in the stomach. A patient would take the therapy orally while maintaining a strict gluten-free diet. The intent of the therapy is to combat low levels of gluten that persist in the food chain, as well as in situations where ingestion of gluten is unavoidable due to cross contamination, such as at restaurants.
    The recent latiglutenase Phase 2b trial (CeliAction) conducted by Alvine and AbbVie unfortunately did not meet their primary goal of demonstrating clinically significant intestinal healing. The secondary goal of symptom reduction did show evidence of success in a subclass of celiac disease patients. ImmunogenX, following the acquisition of the Alvine assets, completed a post hoc data analysis from this trial. Statistically and clinically significant symptom improvement was shown for abdominal pain, bloating, tiredness, and constipation for patients who had persistent positive readings in key antibody levels (i.e., seropositive). These exciting results were highlighted at the Digestive Disease Week meeting in May 2017 and are now published in Digestive Diseases and Sciences. We will travel to India in September to present our research at ICDS 2017 (International Celiac Disease Symposium).
    If the primary endpoint of the CeliAction trial had been focused on reducing symptoms of gluten exposure, then that trial could rightfully have been called a success. Therefore, as a next step, ImmunogenX will be to go back into the clinic and reconfirm these positive results, demonstrating symptom improvement, in our next phase 2 trial. This will enable the company to transition to a pivotal trial for FDA registration.
    We attended another FDA Type C meeting in May 2017, which reinforced the continuing positive support from the agency regarding our symptom label, our Phase 2/3 trial strategy and our celiac disease symptom diary (CDSD) patient reported outcome (PRO) instrument. It is very gratifying to have such documented support from the FDA for our mission.
    Please visit our website www.immunogenx.com for updates on our progress and feel free to contact us with any questions (info@immunogenx.com).

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