Identifying Health Disparities in Celiac Disease Awareness, Diagnosis and Treatment for Black Americans
Celiac disease affects one in 133 Americans. My son is one of them.
A serious autoimmune condition that causes damage to the small intestine resulting in debilitating symptoms, celiac disease, if left untreated, can lead to a number of long-term health problems including infertility and some types of cancer.
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 nationwide benchmark 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.
Other key findings about Black Americans and celiac disease from the 2022 Beyond Celiac Survey Report indicating lack of awareness and health information about celiac disease and/or gluten-sensitivity include:
- Only 8% of Black Americans know that celiac disease often runs in families, compared to 21% of Hispanic Americans and 24% of White Americans.
- Only 37% of Black Americans, compared to 52% of Hispanic Americans and 58% of White Americans, realize that following a strict 100% gluten-free diet is how someone with celiac disease controls it today.
- Only 33% of Black Americans are aware that someone with celiac disease who strictly follows a gluten-free diet still has to worry about experiencing celiac disease symptoms or health conditions caused by it, whereas 41% of Hispanic Americans and 56% of White Americans know it.
“Celiac disease is not only mis-understood, it is also misdiagnosed. We know equal access to healthcare information, diagnosis and treatment is a concern on many levels including for people of color. These inequities place Black Americans at greater risk for poor health outcomes especially when it comes to a condition like celiac disease which is hard to diagnose and has no treatment or cure,” Beyond Celiac CEO Alice Bast said.
Additional Disparity Research
In a study by the University of Chicago and Harvard School of Public Health, researchers found that Black Americans who have symptoms associated with celiac disease have 90% decreased odds of receiving the appropriate follow-up for diagnosis.
At the University of Alabama at Birmingham, a new 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.
Eighty percent of Black patients with biopsy-confirmed celiac disease in the registry had TTG test results that were less than the upper limit of normal, compared to about 9 percent of non-Hispanic White patients in the registry. Additionally Black patients were much less likely to have tests for the genes associated with celiac disease.
“We believe is important that all Americans understand the symptoms of celiac disease so they can advocate for their own health, including gaining an accurate diagnosis and the treatment needed to live a healthy life,” Bast said.
In partnership with the National Minority Quality Forum (NMQF), Beyond Celiac is examining and addressing health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF, a leading advocacy organization on issues of health disparity, are investigating the extent of undiagnosed celiac disease, particularly among non-Caucasians, through analysis of Medicare and Medicaid data. The goal is to map celiac disease across the United States to drive diagnosis and ensure clinical trials include a diverse, representative patient population.
“Beyond Celiac is taking action to increase awareness, diagnosis and treatment for Black Americans,” Bast continued. “Two examples of this action are the NMQF project and Voices of Celiac Disease Project.”
In the Beyond Celiac Voices of Celiac Disease project, non-whites with celiac disease have shared stories of being dismissed by physicians who told them they could not have celiac disease because of their race and, thus delaying diagnosis due to race. The likelihood of being diagnosed could be influenced by race and ethnicity because of access to medical care, referral bias and other factors. The project aims to increase awareness of the prevalence of celiac disease in the United States and to investigate the extent of undiagnosed celiac disease in diverse populations.
Alice Bast’s personal experience with celiac disease ignited her passion to help the estimated three million Americans suffering from the disease receive a prompt and accurate diagnosis. She hopes to inspire hope and accelerate research to ensure that people with celiac disease can live life to the fullest.
The Harris Poll Survey Methodology
This survey was conducted online within the United States by The Harris Poll on behalf of Beyond Celiac from February 8-10, 2022 among 2,039 adults ages 18 and older.