Q&A: Overcoming health disparities in celiac disease: ‘We can’t do this alone’
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Only half of Americans reported being aware of celiac disease or gluten-sensitivity, with Black Americans reporting least awareness of this disease, according to “eye-opening” results from The Harris Poll on behalf of Beyond Celiac.
Although celiac disease was previously thought to affect predominantly Caucasian populations, a 2018 systematic review published in Clinical Gastroenterology and Hepatology demonstrated that celiac disease can – and does – exist among all ethnic groups. Awareness of these comparable disease risks have not been disseminated among minority groups, indicating possible health inequities in both diagnosis and treatment.
Results from The Harris Poll showed that only 8% of Black Americans know that celiac disease often runs in families, compared with 21% of Hispanic Americans and 24% of white Americans. In addition, only 37% of Black Americans realize that following a strict gluten-free diet is necessary to control disease, compared with more than half of surveyed Hispanic and white Americans.
Further, just 33% of Black Americans, compared with 41% of Hispanic Americans and 56% of white Americans, are aware that despite adhering to a strict gluten-free diet, patients still have to worry about experiencing symptoms or health conditions.
“We believe it 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,” Alice Bast, founder and CEO of Beyond Celiac, said in an organization press release. “Beyond Celiac is taking action to increase awareness, diagnosis and treatment for Black Americans.”
Healio spoke with Bast about Beyond Celiac’s mission, its initiatives to increase health equity and awareness among underrepresented populations, and how these survey results can inform the care of patients with celiac disease going forward.
Healio: What is Beyond Celiac and what is its mission?
Bast: Beyond Celiac is an organization leading and uniting our community to drive diagnosis and advance research for celiac disease through our scientific plan to accelerate the discovery of new treatments and, ultimately, a cure.
Healio: What implications does a diagnosis of celiac disease have on a patient’s quality of life?
Bast: The disease itself is misunderstood and often takes a prolonged period — sometimes 10 years or more — to be diagnosed. Once someone is diagnosed with celiac disease, there is a common misconception that the gluten-free diet is easy to manage; it is poorly understood is that even one particle of gluten can set off an immune reaction.
This is a serious autoimmune disease that is detrimental to a patient’s life because they cannot eat without fear. It’s not just a tummy ache: Accidental gluten exposure can cause long-term health consequences that lead to osteoporosis, certain types of cancers, reproductive health issues and neurocognitive issues, as it relates to the brain-gut axis.
The perceived burden of celiac disease surpasses even type 1 diabetes. We hear from our community that having to follow a strict gluten-free diet makes an impact on major life decisions — some teenagers are choosing college based on the ability to be fed rather than educational programs, and people have reported that their spouses have divorced them because they are seen as high maintenance. It also affects job decisions.
While having an accurate diagnosis can get someone on the road to feeling better, the gluten-free diet is burdensome and carries a real negative impact on a day-to-day basis. It is not easy to manage a 100% strict gluten-free diet in a world full of gluten. That is why Beyond Celiac understands that we need treatments and a cure for celiac disease in the marketplace, so our community is not worried about every bite of food that goes in their mouths.
Healio: How often does misdiagnosis occur and what are the implications?
Bast: Between 50% to 85% of people with celiac disease are undiagnosed or misdiagnosed and the reason is because many people are self-diagnosed rather than getting accurate testing. Further, it is estimated that it can still take 6 to 10 years to get an accurate diagnosis, which is enormously problematic. People are suffering and their lack of diagnosis can lead to an increased risk for downstream adverse events.
Healio: Why did your team undertake the Harris Poll investigation?
Bast: We wanted to identify and highlight the most accurate and relevant information about public perception and understanding of celiac disease — from its treatments to burdens from people who are actively living with it.
We have often heard from our community that doctors suggest “go gluten-free and see how they feel.” We suspect there is a disconnect in what physicians are learning about celiac disease. We have also had the sense that the gluten-free fad over the last decade has increased awareness of celiac disease to some degree, though the diet often overshadows the seriousness of the disease. Without using a statistically valid polling method, there is no way for us to know for sure what people think they know, what they may not understand and how this differs across the country and among different races, ages and gender.
Lastly, we aimed to identify those gaps in understanding and awareness so we can illuminate where this is being underdiagnosed or misdiagnosed.
Healio: What were the key takeaways from the poll and how can they inform patient care going forward?
Bast: Only half of Americans report knowing anything about celiac disease or gluten sensitivity, which really eye opening. Additionally, only half of Americans recognize that following a strict gluten-free diet 100% of the time — which is no wheat, barley or rye — is the only way someone with celiac disease can control it. About 20% incorrectly believe that there is a medicine to prevent the gluten reaction and 10% incorrectly think there is a medicine that cures celiac disease. About a quarter of our population think there is some treatment besides the gluten-free diet.
These results made us more realistic about the work we need to do moving forward in focusing on our educational initiatives. As we are driving treatment and care for celiac disease, it is important that we do not stop focusing on ensuring everybody is accurately diagnosed, especially when it comes to health disparities and the fact that Black Americans are 63% more likely than Hispanic Americans (49%) and white Americans (47%) to have no awareness about celiac disease or gluten sensitivity.
Healio: How might these barriers in health care be overcome in the future?
Bast: I look at it this through partnerships. We can’t do this alone — nobody can. At Beyond Celiac we built a partnership with the National Minority Quality Forum to examine and address health inequities, particularly among the non-white community, in diagnosis and treatment through Medicare and Medicaid data. We then map out regions of the country to drive diagnosis and eventually ensure diverse clinical trials.
Second, we have a project called The Voices of Celiac Disease where non-white patients with celiac disease have shared their stories of being misdiagnosed by physicians who told them they could not have celiac because of their race. We also held a summit where we brought in key opinion leaders to talk about underrepresented communities and what can we do to build a plan for identifying health disparities and ensure everybody receives proper diagnoses, care and treatment.
Healio: What additional initiatives does Beyond Celiac promote?
Bast: At Beyond Celiac we have a scientific research plan that takes a 360-degree approach to addressing problems patients with celiac disease face.
The first leg of our plan is to fund translational research. The second is evidence generation from the community, so we can advance and fund research that addresses problems from head to toe. We also have an established investigator and fellowship awards to encourage the best and the brightest to get involved in celiac research. The last leg is clinical trials where we work with biotech companies and regulatory bodies to increase enrollment.
Healio: What advice would you give providers treating this group of patients?
Bast: Because celiac disease, even after diagnosis, may continue to pose health problems for your patients, stress the importance of follow-up visits for comprehensive health panel testing and refer them to important resources for maintaining a gluten-free diet. Encourage them to ask the right questions in restaurants, learn to read food labels and advocate for themselves in different settings.
If a person is still symptomatic after diagnosis, the problem could be inadvertent gluten exposure that needs to be addressed with patient education. Consider referral to a dietician or nutritionist who understands celiac disease. Also understand that it can take some time for the patient on the gluten-free diet to heal. If the patient does not understand the long-term risks and continues to intentionally eat gluten, that it will jeopardize their health.
Healio: What else should our readers know about this topic?
Bast: Beyond Celiac is here to accelerate research for treatment and a cure because, unfortunately, the gluten-free diet is not enough. We have made a lot of progress in this area and as we move forward, there is hope.
The word “beyond” when we talk about Beyond Celiac is meant to signify that as we gain knowledge on how to best treat celiac disease, it might help gain a better understanding of how to treat other autoimmune diseases as well. It is important to have top immunologists and researchers in the field working alongside gastroenterologists to learn from one another and push us closer to our goals.
For additional information or resources on celiac disease, visit beyondceliac.org.
References:
Beyond Celiac identifies health disparities in celiac disease awareness, diagnosis and treatment for Black Americans. https://www.beyondceliac.org/press-room/beyond-celiac-identifies-health-disparities-in-celiac-disease-awareness-diagnosis-and-treatment-for-black-americans/. Published Aug. 23, 2022. Accessed Sept. 8, 2022.
The annual celiac disease landscape. https://www.beyondceliac.org/wp-content/uploads/2022/05/2022-Beyond-Celiac-Survey-1.pdf. Published May 2022. Accessed Sept. 8, 2022.
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