First Nationwide Benchmark Report on Celiac Disease from Beyond Celiac Shows Wide Misunderstanding of this Serious Autoimmune Disease

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May 16, 2022, 10:05 ET

PHILADELPHIA, May 16, 2022 /PRNewswire/ -- Often misunderstood and frequently misdiagnosed, celiac disease remains a mystery for many. Only half of Americans (50%) report knowing anything about celiac disease and/or gluten sensitivity, according to a recent nationwide benchmark survey conducted by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure, in February 2022 among more than 2,000 U.S. adults.

Celiac disease is a serious autoimmune condition. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated can lead to a number of serious, long-term health problems including infertility and some types of cancer. Celiac disease affects one in 133 Americans.ⁱ

There is currently no medication on the market to treat celiac disease. The only available treatment is to follow a strict gluten-free diet, which may not fully offset the health risks of the disease. Only half of Americans (53%) recognized that following a 100% gluten-free diet (no wheat, barley or rye) is the only way someone with celiac disease can currently control it.

"Accidental gluten exposure is something all of us who live with celiac disease worry about," said Beyond Celiac CEO Alice Bast. "If more Americans understood how dangerous gluten can be for a person with celiac disease, it would be a big step forward for our community to live life to the fullest and eat without fear."

Other key findings include:

Only one-third (32%) realize that half (50%) or more of people with celiac disease are undiagnosed.
Two-thirds (61%) of Americans are "not at all sure" about conditions that untreated celiac disease can lead to, such as depression and anxiety; anemia; brain fog, migraines and other neurological disorders; infertility; some types of cancer; osteoporosis or osteopenia; and delayed growth in children.
Only one-fourth (24%) of Americans understand that celiac disease is an autoimmune disease.
Almost one in five (18%) incorrectly believe there is medicine that prevents a gluten reaction, while one in 10 (10%) incorrectly think there is a medicine that cures celiac disease.
Only 49% of Americans know that someone with celiac who strictly follows the gluten-free diet still has to worry about experiencing celiac disease symptoms or health conditions caused by it.

"The fact that this survey showed half of Americans lack awareness of this disease is alarming," Bast commented. "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. We know equal access to healthcare information, diagnosis and treatment is a concern, and these results highlight those potential disparities. 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," she added.

The full report on the survey results, "The Mystery of Celiac Disease: The Need for Greater Awareness and Accelerating the Quest for a Cure" can be found at 2022 Beyond Celiac Survey Report. The report also presents the facts about the disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.

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. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within + 2.8 percentage points using a 95% confidence level. For complete survey methodology, including weighting variables and subgroup sample sizes, please contact [email protected]

About Beyond Celiac
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live healthy lives and eat without fear – a world Beyond Celiac. www.BeyondCeliac.org.

Media Contact:
Angela Miller, 319.331.5090
[email protected]

Claire Baker, 267.419.2111
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Choung, R. S., Unalp-Arida, A., Ruhl, C. E., Brantner, T. L., Everhart, J. E., & Murray, J. A. (2017). Less hidden celiac disease but increased gluten avoidance without a diagnosis in the United States. Mayo Clinic Proceedings, 92(1), 30–38. https://doi.org/10.1016/j.mayocp.2016.10.012

SOURCE Beyond Celiac