Beyond Celiac believes in a world where we all can live healthy lives free from bias and barriers. Across our work, we must engage diverse perspectives and promote equity in our community to realize our vision of a world beyond celiac.
Beyond Celiac fosters a sense of belonging by elevating underrepresented voices as we work together for a cure. We seek to be a community that welcomes diverse perspectives and provides meaningful opportunities to empower marginalized populations.
The vision of Beyond Celiac is a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure – A world Beyond Celiac.
At the heart of this vision is a world in which all people have equal access to good health choices, healthcare, and health outcomes.
Our work is dedicated to finding treatments and a cure for celiac disease, and part of that effort is focused on reducing disparities, both in diagnosis and access to resources. Achieving health equity comes from ensuring equity of opportunity and access in all facets of life for all members of the celiac disease community.
As a result, our ongoing commitment is to continue advocating for access to healthcare and the right for everyone to live their healthiest life, especially communities that are disproportionately affected by systemic, longstanding inequities of any type. We recognize that only by working with and listening to people of all races, backgrounds, ethnicities, sexual and gender orientations, abilities, and cultural backgrounds can we truly understand and appreciate one another and fulfill our mission of a world Beyond Celiac. Our work in all areas will reflect this important truth – in science, in events and community resources, in partnerships, and in all of our interactions with the celiac disease community.
When we say ‘together for a cure’, we mean everyone.
We believe the way forward is in genuinely moving together, with understanding, acceptance, justice, and fairness for all.
Studies, including some helmed by Beyond Celiac, are beginning to uncover vast disparities in celiac disease diagnosis and treatment. More work is needed in this area, but so far research has found:
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. Read more
Black people and those with Medicaid and Medicare who went to the doctor with iron deficiency anemia and chronic diarrhea had about 90 percent decreased odds of having the appropriate follow-up, concluded researchers from the University of Chicago Medicine section of gastroenterology, hepatology and nutrition and Harvard School of Public Health. Read more
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. Read more
Only 8% of Black Americans know that celiac disease often runs in families, compared to 21% of Hispanic Americans and 24% of White Americans. Read more
At the University of Alabama at Birmingham, a registry of celiac disease patients showed that Black Americans with biopsy-confirmed celiac disease were more likely than non-Hispanic White Americans to have negative results on the most commonly-used diagnostic blood test for celiac disease, the anti-tissue transglutaminase immunoglobulin A (TTG) blood test. A positive TTG test will often trigger an endoscopy and biopsy for celiac disease diagnosis. The study raised the question of whether further confirmatory testing for celiac disease is deterred in Black Americans in general clinical practice. Read more
A 2013 retrospective study identified inconsistencies in the testing of celiac disease at a Texas hospital, finding many children presenting with celiac disease symptoms were not being tested. The study stated that “children’s race/ethnicity, but not their associated gastrointestinal symptoms predicted whether celiac testing was undertaken… none of the children self-identified as African-American…had celiac serologic testing completed.” Read more
Research indicates that LGBTQ+ patients are more likely to experience a lower quality of care and poor health outcomes. Nearly 1/6 report facing discrimination in accessing healthcare and 1/5 say they have avoided medical care for fear of discrimination. Read more
What will we uncover next?
Beyond Celiac partnered with NMQF, an organization dedicated to reducing patient risk by assuring optimal care for all, to uncover and address disparities in celiac disease.
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Beyond Celiac has entered 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.
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COCCI was created with the mission to improve the quality of life for BIPOC who are affected by IBD, digestive disorders and associated chronic illnesses through Community, Research, Education, and Advocacy. We partner with COCCI on smaller projects like posts and events.
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Renowned Mexican opera tenor Arturo Chacón-Cruz has partnered with Beyond Celiac to spread awareness of celiac disease in English and Spanish to his global audience.
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Our award-winning campaign to collect and share celiac disease diagnosis stories.
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Beyond Celiac shares the latest in research related to celiac disease, non-celiac gluten sensitivity and disparities.
Learn More“At one point celiac disease was discussed but dismissed because of my ethnicity.”
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
Advocate. Black and mixed-race content creator living with celiac disease. Shares educational materials, reviews, and recipes on the Instagram account @yeet.that.wheat
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
Gastroenterologist, University of Alabama at Birmingham Hospital; assistant professor in the Division of Gastroenterology and Hepatology at the University of Alabama at Birmingham
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
Healthcare drug development expert, business and operational strategy transformation leader with over 25 years of experience in drug development
Clinical Psychologist at Brenner’s Children Hospital and Assistant Professor at Wake Forest University School of Medicine in NC. Puerto Rican, bilingual, and a 2023 Diversity MBA Top 100 Under 50 Executive and Emerging Leaders.
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