Mobile menu

Racial and ethnic healthcare disparities in celiac disease diagnosis explored in Beyond Celiac presentation at DDW

May 24, 2022

Analysis of medical claims data details celiac disease diagnosis and potential missed diagnosis across the US


By Maria Luci, director of research engagement

Someone’s race and ethnicity and what part of the United States they live in can affect whether they are diagnosed with celiac disease, suggests a preliminary study Beyond Celiac presented Tuesday at Digestive Disease Week.

Racial and ethnic healthcare disparities in celiac disease diagnosis were indicated by analysis of geographic and demographic distribution of celiac disease in the United States. The analysis was based on evidence from 2016 Medicare and Medicaid fee-for-service claims reviewed in a project done in partnership between Beyond Celiac and the National Minority Quality Forum. The groups partnered to examine and address health inequities in the diagnosis and treatment of celiac disease.

Diagnosed and potentially undiagnosed celiac disease among Medicare beneficiaries were mapped on the DDW poster, which was presented by Amy Ratner, Beyond Celiac director of scientific affairs. The analysis was done using a platform developed by NMQF, a national research and educational organization dedicated to ensuring that high-risk racial and ethnic populations and communities receive optimal health care.

More celiac disease in Northeast, Midwest

More than 70,000 Medicare beneficiaries had at least one celiac-disease-related claim in 2016. They were located primarily in the Northeast and Midwest. Meanwhile potentially undiagnosed celiac disease, based on beneficiaries with combined claims for irritable bowel syndrome (IBS) and anemia, showed the opposite geographic distribution, with beneficiaries primarily located in the South and East. Nearly 11,000 Medicare beneficiaries had these combined claims.

“This may suggest some of these beneficiaries have celiac disease and are misdiagnosed,” the study says, noting that celiac disease centers with gastroenterologists and dietitians with expertise in celiac disease are located primarily in the Northeast and Midwest and may play a role in increased diagnosis.

The project’s medical advisory panel identified IBS and anemia as related medical conditions and/or symptoms that suggest a misdiagnosis or missed diagnosis of celiac disease. When someone has both conditions, the potential that a celiac disease diagnosis has been missed is increased.

IBS and anemia diagnosed more than celiac disease in Black people

The Medicare data showed that there were more Black people who had a both IBS and anemia claims compared to those with a celiac disease claim, about 3 percent compared to more than 7 percent. Likewise, more women had IBS and anemia claims, about 77 percent, compared to celiac disease claims, about 70 percent.

While celiac disease is thought to affect about 1 percent of the population worldwide, many of those with the condition remain undiagnosed, up to 80 percent. The likelihood of being diagnosed could be influenced by race and ethnicity because of access to medical care, referral bias and other factors.

Previous research has shown that odds of receiving appropriate testing when presenting with celiac disease symptoms are reduced in Black and Hispanic patients. “This may partially explain why so few Black and Hispanic beneficiaries had celiac disease claims in 2016,” the Beyond Celiac/NMQF preliminary study concludes.

“The study provides some initial evidence about geographic and demographic distribution of celiac disease, which may indicate racial and ethnic disparities in the diagnosis of this disease across the US,” the authors note.

The study was chosen for presentation at DDW in a competitive process. DDW is the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.

Most people diagnosed with celiac disease are white

Most eligible beneficiaries in both Medicare and Medicaid with a celiac disease claim in 2016 were white, nearly 93 percent in Medicare and about 63 percent in Medicaid. However, Medicaid beneficiaries were more racially diverse, with a greater percentage Black and Hispanic individuals. Nearly 6 percent of those with celiac disease claims were Black compared to about 3 percent in Medicare. About 11 percent in Medicaid were Hispanic, compared to 1 percent in Medicare.

The gender distribution in both programs was similar, with about 70 percent female.

Study authors note that their findings regarding health disparities in celiac disease diagnosis are preliminary. “More research is needed to corroborate these initial observations and to explore potential root causes,” they conclude. In addition to Ratner, Beyond Celiac study authors are Kate Avery, director of patient engagement, and Salvo Alesci, MD, chief scientist and strategy officer. NMQF authors are Mary Murray, vice president, collaborative action network and Taylor Stair, data analyst.

In addition to increasing awareness of the prevalence of celiac disease in the U.S. and investigating the extent of undiagnosed celiac disease in diverse populations, Beyond Celiac and NMQF will use extensive research of underserved populations to inform the development of interventions focused on the needs of all patients, including Black, Hispanic, Asian and underserved populations.



Think you may have celiac disease?

Symptoms Checklist