celiac.org

In a new study, researchers reviewed the available literature to determine the prevalence of epilepsy in patients with celiac disease or gluten sensitivity, and vice versa. For the purposes of this study, the researchers defined “gluten sensitivity” as patients with positive celiac-specific serology (blood tests) with symptoms beyond just intestinal symptoms, but who do not have an abnormal biopsy indicating celiac disease. The results indicate celiac disease and gluten-sensitive patients have a greater chance of being diagnosed with epilepsy (1.8 times more prevalent than in general population) and there was an increased chance of celiac disease or gluten sensitivity among patients with epilepsy (2 times more prevalent than in general population). In those with epilepsy due to celiac disease and gluten-sensitivity, the gluten-free diet was shown to be effective in managing epilepsy.

One of the studies highlighted in the article, Forgoing the Duodenal Biopsy for Celiac Disease Diagnosis Among Adults in the United States: Results of a National Survey, analyzed data from the Celiac Disease Foundation’s iCureCeliac® patient registry database. Authors of this abstract included Foundation Research Committee member Benjamin Lebwohl, Foundation Medical Advisory Board member Peter Green, and Foundation CEO Marilyn Geller. In this study, Andrew M. Joelson and colleagues analyzed data from 982 patients in the iCureCeliac® database to find out whether the absence of biopsy confirmation affected outcomes such as gluten-free diet adherence. The results showed that patients who were diagnosed by serology alone were more likely to be diagnosed by a healthcare practitioner other than a gastroenterology specialist and less likely to seek nutritional counseling for the treatment of celiac disease.

On October 15, 2018, the Celiac Disease Foundation submitted a letter of support for the National Health Council’s (NHC) comments to the FDA’s Request for Information (RFI) regarding Standard Core Clinical Outcome Assessment and Endpoint Sets (CCOAES). As a member of the National Health Council, and an advocate for patient-centered outcomes research, the Celiac Disease Foundation was pleased to collaborate on the NHC’s comments and to submit a letter in support of this worthy effort. About the National Health Council: The NHC is the only organization that brings together all segments of the health community to provide a united voice for the more than 160 million people with chronic diseases and disabilities and their family caregivers. The Foundation Submits Letter of Support to FDA on Developing Patient-Focused Clinical Outcome Assessments and Endpoints

At the 2018 ACG Annual Scientific Meeting, Columbia University Medical Center researchers – including Celiac Disease Foundation Medical Advisory Board member Peter Green and Research Committee member Benjamin Lebwohl – presented results from a new study on detecting gluten in restaurant foods. Because there is no regulation of the claims made by restaurants that food items are gluten-free, there is no guarantee that food items that are labeled “gluten-free” in restaurants are truly gluten-free. It is important to note that these results come from crowd-sourced data, meaning these results may not be reflective of all gluten-free restaurant foods. Celiac Disease Foundation Medical Advisory Board member Daniel Leffler, MD, told Medscape Medical News, “This is a very clever study done that unfortunately confirms what we have long suspected, which is that there is no such thing as a gluten-free diet.