Delays can be as long as 15 years, Beyond Celiac original research presented at DDW finds
By Amy Ratner, director of scientific affairs
Even those who have high-risk conditions for celiac disease face long delays in getting diagnosed, according to a study presented at Digestive Disease Week (DDW) by Weil Cornell Medicine and Beyond Celiac.
A review of health insurance claims of about 9,400 people with celiac disease showed that the average time to diagnosis was about three years, with some delayed as long as 15 years.
The time to diagnosis was longest in:
“Although the reasons for these delays remain unclear, they highlight the critical need for increased awareness of celiac disease to facilitate timely diagnosis, particularly in underserved populations,” concludes the study presented by Haley Zylberberg, MD, of Weil Cornell.
Hispanic and Black people with conditions that should lead to testing had average delays of about 38 and 36 months, respectively. White people had an average delay of about 34 months.
High-risk conditions that should lead to testing for celiac disease were identified in celiac disease diagnosis guidelines from professional gastroenterological associations for adults and children.
They include intestinal symptoms such as abdominal pain, diarrhea, constipation and malabsorption. Also included are symptoms such as failure to thrive, iron deficiency anemia, mouth ulcers, ataxia, peripheral neuropathy and unexplained weight loss.
Other conditions related to celiac disease that should warrant testing are autoimmune thyroid disease, dermatitis herpetiformis, Down syndrome, irritable bowel syndrome, Type 1 diabetes and Turner syndrome. Family history of celiac disease, and in children, failure to thrive, should also lead to testing.
Evaluated individually, all high-risk conditions had an average delay of more than 18 months. Failure to thrive was the condition most likely to lead to the fastest diagnosis. Ataxia had the longest delay.
The study was based on US private payer health insurance claims from 2007 to 2022. The time to celiac disease diagnosis was calculated from the time a high-risk condition was found in the claims to the time celiac disease was confirmed by a biopsy.
DDW is the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.
This is fifth time and the fourth consecutive year Beyond Celiac original research has been presented as a poster at DDW. For the first time, our original research poster has been honored as a Poster of Distinction at DDW. Zylberberg also collaborated with Beyond Celiac on a previous study presented at DDW in 2022.
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