New Study Reveals Disparities in Celiac Disease Diagnosis Among Non-White Populations in the US

Beyond Celiac

PHILADELPHIA, PA — Original research using Medicare data from a partnership between Beyond Celiac and the National Minority Quality Forum (NMQF) was presented yesterday at Digestive Disease Week (DDW), the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. “Results suggest that disparities in healthcare access may contribute to the underdiagnosis of celiac disease, particularly among the non-white population in the United States,” the analysis of data found.

“Correlations between relative prevalence of celiac disease and sociodemographic variables in the U.S.,” was presented by Haley M. Zylberberg, MD, gastroenterology fellow at Columbia University Department of Medicine and the lead study author. The analysis included median income, race, urban areas and proximity to a celiac disease center. The results showed that as the median income increased, so did the prevalence of celiac disease. The full study can be found here.

The research presented at DDW by Columbia University and Beyond Celiac found that a higher income, living in an urban area and living close to a celiac disease center are all positively correlated with celiac disease prevalence, while being Black or Latino/Hispanic is negatively correlated. Meanwhile, the percent of Latino/Hispanics with Medicare claims for celiac disease decreased as the percentage of relative celiac disease increased. For Black people, this was also largely true.

“We’re proud to lead the way in documenting and bringing greater awareness to health inequities in celiac disease,” Alice Bast, Beyond Celiac CEO, said. “This is an area that has long been neglected in celiac disease, depriving people of a celiac diagnosis based on race, ethnicity, income and where they live. At Beyond Celiac we are committed to improving the lives of everyone with celiac disease as we search for new treatments and a cure.”

This is the second year that data analysis based on the Beyond Celiac/NMQF project has been presented at DDW. In 2022, preliminary analysis and mapping of claims showed someone’s race and ethnicity and what part of the United States they live in can affect whether they are diagnosed with celiac disease. More than 70,000 Medicare beneficiaries had at least one celiac-disease-related claim in 2016.

Further, Black Americans (63%) are significantly more likely than Hispanic Americans (49%) and White Americans (47%) to have no awareness of celiac disease and/or gluten-sensitivity, suggesting potential health inequities in both diagnosis and treatment, according to a 2022 nationwide survey conducted by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure. Other research indicates celiac disease diagnosis and treatment disparities for Black Americans.

Read more about the Beyond Celiac commitment to health equity.

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