On May 20, researchers from the Takeda Pharmaceutical Company and Celiac Disease Foundation presented the results from a new study. Results show that many struggle to avoid accidentally eating gluten even while paying close attention to diet. Patients who do maintain a strict gluten-free suffer from a variety of symptoms.
Titled “Adherence to the gluten-free diet and celiac patients outcomes: real world evidences from an international patient registry, iCureCeliac”, the study surveyed 552 people. All had self-reported biopsy-confirmed celiac disease who completed the Celiac Symptoms Index (CSI) and Celiac Dietary Adherence Test (CDAT). Participants were all members of iCureCeliac, an online patient-powered celiac research network hosted by the Celiac Disease Foundation with more than 6,000 members.
Researchers measured patient demographics, disease characteristics, diagnostic journey and outcomes, diet compliance, symptom burden and quality of life.
The researchers noted that:
- Although 96% of patients believe they are sufficiently adhering to a gluten-free diet, as measured by the Celiac Dietary Compliance Test (CDAT), half are not.
- Among the half who are not sufficiently adhering to a gluten-free diet according to the CDAT, more than 50% report high symptom burden, poor quality of life, and missed, on average, five weeks of work or school a year due to celiac disease.
- 74% of all patients report accidental exposure to gluten in the last 30 days.
“This is why we at the Celiac Disease Foundation are devoting enormous energy and resources towards finding alternative treatments to the gluten-free diet, and a cure,” said Marilyn G. Geller, executive director of the Celiac Disease Foundation.
For tips from Gluten-Free Living on what to do after accidentally eating gluten, click here.
Geller said the foundation is currently seeking donations. Funds will help officials support iCureCeliac, celiac research and hopefully one day find a cure. Donations are tax-deductible. Click here to donate.
Study results were presented during the Digestive Disease Week meeting in San Diego. Digestive Disease Week is the world’s largest meeting of physicians, researchers, and industry in gastroenterology and related fields.
For more information on the Celiac Disease Foundation project, contact 818-716-1513, ext. 101 or [email protected].