Beyond Celiac Leading the Way for Health Equity in Celiac Disease

Beyond Celiac is making strides toward health equity for all individuals affected by celiac disease. Through a series of initiatives and partnerships aimed at reducing disparities and increasing access to resources, Beyond Celiac is at the forefront of increasing diversity in the celiac disease space.

Studies, including some helmed by Beyond Celiac, are beginning to uncover notable disparities in celiac disease diagnosis and treatment. More work is needed in this area, which is why Beyond Celiac has stepped up to lead the way.

Partnerships and Research

From 2020 to 2024, Beyond Celiac worked with the National Minority Quality Forum (NMQF), a leading advocacy organization on issues of health disparity, to address health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF investigated the extent of undiagnosed celiac disease, particularly among non-Caucasians, through analysis of Medicare and Medicaid data. The goal was to map celiac disease across the United States to drive diagnosis and ensure clinical trials include a diverse, representative patient population.

Beyond Celiac published research from this mapping project at the 2023 Digestive Disease Week (DDW) conference. The poster, “Correlations between relative prevalence of celiac disease and sociodemographic variables in the United States,” was presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University who analyzed the NMQF data. A poster presented at DDW 2022 also highlighted racial and ethnic disparities in celiac disease diagnosis from the data.

In addition, Beyond Celiac has teamed up for a multi-year partnership with Takeda Pharmaceutical Company to identify and reduce disparities in celiac disease diagnosis and management, aiming to raise awareness and help minority patients participate in clinical trials.

“Beyond Celiac is a vital conduit within the celiac disease community, so we are eager to expand our work together to better support people with celiac disease,” said Marcelo Freire M.D., Head of Gastroenterology, Global Medical Affairs at Takeda. “Improving diagnosis and increasing awareness of celiac disease, particularly among underrepresented communities, is an important endeavor with the potential to significantly improve patient inclusion and access to research and care.”  Added Sylvester Uwumarogie, MD, Associate Director and DE&I project lead, Global Medical Affairs.

Community Guidance

Beyond Celiac has also assembled a Diversity, Equity, and Inclusion (DEI) webpage, committee, and advisory board, which is dedicated to ensuring that the organization’s policies and practices reflect its commitment to equity and inclusivity. This advisory board is composed of dedicated individuals working to promote cultural competency, diversity efforts, and sensitivity within and outside of the organization. DEI advisory board members include:

• Elizabeth Valencia, MD, JD, FCLM – Enterprise Associate Dean of Diversity Equity and Inclusion for Mayo Clinic Alix School of Medicine for Arizona, Florida, Minnesota campuses; medical expert in Breast Cancer Imaging & Intervention at Mayo Clinic Rochester, MN
• Liz Purvis – Advocate. Black and mixed-race content creator living with celiac disease. Shares educational materials, reviews, and recipes on the Instagram account @yeet.that.wheat 
• Monique Germone, PhD, BCBA – Pediatric psychologist of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and associate professor at the University of Colorado, School of Medicine
• Amanda Cartee, MD – Gastroenterologist, University of Alabama at Birmingham Hospital; assistant professor in the Division of Gastroenterology and Hepatology at the University of Alabama at Birmingham
• Juanita Belton, PA-C, MPH – Physician assistant in gastroenterology at Boston Medical Center with a subspecialty in Inflammatory bowel disease and instructor at Boston University Medical Center’s Dempsey Center for Digestive Disease

Elevating the Patient Voice

Finally, Beyond Celiac is collecting and sharing diverse patient stories to raise awareness about the unique challenges faced by individuals with celiac disease from all backgrounds, races, genders, and ages through our award-winning Voices of Celiac campaign. By gathering and highlighting these experiences, the organization hopes to inspire greater understanding and empathy for those living with this condition and to foster a more inclusive and supportive community. As community member Jessica shared, celiac disease was initially dismissed as a possibility due to her ethnicity. Stories like these are important to share and expand what medical professionals believe to be the “face” of celiac disease.

“Our vision for a world Beyond Celiac is one in which all people have equal access to good health choices, healthcare, and health outcomes,” says Alice Bast, CEO of Beyond Celiac. “We are committed to reducing disparities in the diagnosis and treatment of celiac disease, and to working with diverse communities to ensure that everyone can live their healthiest life. By partnering with organizations like the NMQF and Takeda, creating a DEI Committee and Board, and collecting diverse patient stories, we are taking important steps toward achieving this goal. We are honored to be the leading organization in promoting health equity in celiac disease.”

To learn more about Beyond Celiac health equity efforts, visit: beyondceliac.org/celiac-disease-and-health-equity