Persistent gluten exposure is known to lead to lifelong health issues in people with celiac disease, including anemia, malnutrition, and lymphoma. More and more evidence is showing what many have long suspected: maintaining a truly gluten-free diet may not be possible. Despite the need to protect celiac disease patients against gluten exposure, very little is actually known about the amount of gluten that is unintentionally ingested by patients following a strict gluten-free diet. Several recent studies have focused on determining exactly that by directly measuring food or the amount of traces of gluten in patients’ stool and urine.
A study led by Jack A. Syage of ImmunogenX found that many individuals following a gluten-free diet regularly consume enough gluten to trigger symptoms and continuous intestinal damage. The average daily gluten consumption for adults on a strict gluten-free diet was 244 mg (stool analysis), 363 mg (urine analysis) and >228 mg (latiglutenase clinical trial analysis). This is well above the recommended level for “safe” gluten ingestion of less than 10 mg per day which is roughly equivalent to one-eighth of a teaspoon of flour. The stool and urine analyses of children were also conducted, and although the children consumed less gluten than the adults, the mean level of gluten consumption was still above the recommended level of gluten ingestion for patients with celiac disease. Data from this study show that anywhere from 3% to 19% of patients consume over 600 mg of gluten on a daily basis.
The findings of the international DOGGIE BAG study (Determination Of Gluten Grams Ingested and Excreted By Adults eating Gluten-free) confirmed the results of previous studies. In this study, researchers found that for 12 of 18 patients with “good” or “excellent” self-reported gluten-free diet adherence, the antibody evidence showed ingestion of gluten up to 10 days prior to biopsy. Researchers collected food (a representative fourth of all food the participants consumed), urine and stool to test for gluten. Of the 8% of food samples with detectable gluten, 40% contained over 20 ppm gluten and 20% contained over 200 ppm of gluten. 56% of all participants had persistent villous atrophy.
These findings confirm the need for new treatments other than a gluten-free diet, according to Jocelyn Silvester, MD, PhD, Principal Investigator of the DOGGIE BAG study: “Our novel findings support the general concern that a gluten-free diet may be more aspirational than achievable, even by highly committed and knowledgeable individuals.”
Measurements of high gluten consumption across multiple studies show that strict control of a gluten-free diet is not manageable for all celiac disease patients, despite their best efforts. These findings indicate that there is a need for adjunct treatments to protect patients from unintended gluten consumption.
Add your data to our iCureCeliac® patient registry today. iCureCeliac® is a free online portal for patients, or their caregivers, to provide critical insights into life with celiac disease. Your participation will help create better diagnostic tools and treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide, which may, one day, cure celiac disease.