In a Medscape Gastroenterology article covering Digestive Disease Week (DDW) 2018, William Balistreri, MD, reported on the studies presented that addressed reliable, cost-effective celiac disease detection. 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. Of the 982 patients included in the study, 79% were diagnosed by biopsy and 21% were diagnosed by serology (blood test) alone.
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. Patients without biopsy confirmation were also found to be more likely to take supplements to help digest gluten, an approach lacking evidence of its effectiveness.
Part of the significance of this study is that it demonstrates how a patient-powered research network, such as iCureCeliac®, can be used to answer questions important to the celiac disease community. The Celiac Disease Foundation is committed to empowering celiac patients to make their voice heard in celiac disease research through participation in iCureCeliac®.
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.
iCureCeliac® Study Presented at Digestive Disease Week 2018