A new study published in the journal Gastro Hep Advances finds that a considerable proportion of Black patients with biopsy-confirmed celiac disease had negative diagnostic blood tests. Traditionally perceived as predominantly affecting non-Hispanic White individuals, this study underscores the importance of bridging existing research gaps to better serve underrepresented populations.The senior man gestures while telling the visiting nurse about his symptoms. They are sitting in his living room. 

For the study—led by Dr. Amanda Cartee at the University of Alabama at Birmingham—researchers looked at clinical characteristics of celiac disease patients, particularly focusing on the differences between Black and non-Hispanic White patients at diagnosis. The research team conducted a comprehensive review of patients within the University of Alabama at Birmingham health system from January 2011 to September 2021, identifying potential and confirmed celiac disease cases using medical billing codes. 

Key Findings: 

  • Out of 852 celiac disease patients, 4.9% identified as Black, showcasing a notable underrepresentation. 
  • Symptomatic presentations prompted testing in both Black and non-Hispanic White patients, while additional factors like comorbidities primarily drove testing among White patients. 
  • Diagnostic approaches did not significantly differ between racial groups, with a substantial portion of patients diagnosed based on symptom resolution or blood tests alone, deviating from recommended guidelines. 
  • Black patients with biopsy-confirmed celiac disease exhibited higher rates of negative diagnostic blood tests, potentially hindering accurate diagnosis and subsequent treatment. 
  • Black patients were more likely to have higher Body Mass Indexes (BMIs) than their White counterparts at diagnosis, which may further prevent correctly diagnosing celiac disease, as doctors often do not associate overweight or obesity with celiac disease. 
  • It’s important to note that the authors suggest their data may be limited based on the timing of the ttg-iga antibody test after initiation of a gluten-free diet. 

Additionally, these findings emphasize the need to reconsider preconceptions surrounding celiac disease demographics and diagnostic criteria. Dr. Amanda Cartee noted, “The prevalence of celiac disease in black Americans is unknown due to limited data, and it actually might even be underdiagnosed in blacks for a variety of reasons.” She continues, “We don’t know much about genetic ancestry. There might be cognitive bias and issues within the health system, and I think that it will take a multifaceted approach to help determine the actual prevalence of celiac disease and these communities.”  

Overcoming disparities in diagnosis and treatment necessitates a comprehensive understanding of the unique challenges faced by underrepresented communities, ensuring equitable healthcare outcomes for all individuals affected by celiac disease. 

Keep reading to learn more about the study.

Initiatives for Equity: Collaboration for Research Advancement

Efforts to rectify health disparities are underway. One of the ways the Celiac Disease Foundation is addressing health inequities is through our partnership with the Society for the Study of Celiac Disease (SSCD), creating the Celiac Disease Foundation – SSCD Improving Health Equity in Celiac Disease Through Disparities Research Award. This collaborative grant aims to support research initiatives that focus on understanding cultural, socioeconomic, and systemic factors that impact celiac disease awareness, diagnosis, and management among underserved populations. Learn more or apply for the grant.

Your experience with celiac disease is critical to ongoing disease research efforts. Add your data to our iCureCeliac® patient registry today. iCureCeliac® is the Foundation’s patient-powered tool that is the single best resource for celiac disease researchers around the world, helping to accelerate the search for treatments and a cure. iCureCeliac® has powered numerous research studies about celiac disease and is the key contributor of patients to a number of critical clinical trials for celiac disease drugs.