First national benchmark report on celiac disease beyond celiac shows widespread misunderstanding about this serious autoimmune disease

PHILADELPHIAMay 16, 2022 /PRNewswire/ — Often misunderstood and often misdiagnosed, celiac disease remains a mystery to many. Only half of Americans (50%) say they know something about celiac disease and/or gluten sensitivity, according to a recent nationwide benchmark survey conducted by The Harris Poll on behalf of Beyond celiac diseasethe main catalyst for a cure for celiac disease, in February 2022 among more than 2,000 American adults.

Celiac disease is a serious autoimmune disease. 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 cancers. Celiac disease affects one in 133 Americans.i

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

“Accidental exposure to gluten is something we are all concerned about,” says 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 fearlessly.”

Other key findings include:

  • Only a 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 growth retardation in children.
  • Only a quarter (24%) of Americans understand that celiac disease is an autoimmune disease.
  • Nearly one in five (18%) falsely believe there is a drug that prevents a gluten reaction, while one in 10 (10%) falsely believes there is a drug that cures celiac disease.
  • Only 49% of Americans know that someone with celiac disease who strictly follows the gluten-free diet should still be concerned about experiencing celiac symptoms or health problems caused by it.

“The fact that this survey showed that half of Americans are unaware of this disease is alarming,” Bast noted. “Black Americans (63%) are significantly more likely than Hispanics (49%) and White Americans (47%) to be unaware of celiac disease and/or gluten sensitivity, indicating potential health inequalities in both diagnosis and treatment. equal access to health information, diagnosis, and treatment is a concern, and these results highlight those potential differences. It is important that all Americans understand the symptoms of celiac disease so they can advocate for their own health, including obtaining 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 search for a cure” can be found at 2022 Beyond celiac disease research report† The report also presents the facts about the disease and outlines how Beyond Celiac is taking steps to accelerate the search 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 aged 18 and over. The sampling precision of Harris online polls are measured using a Bayesian credible interval. For this study, the sample data is accurate to +2.8 percentage points with a 95% confidence level. For full research methodology, including weighting variables and subgroup samples, please contact [email protected]

About Beyond Celiac Disease
Founded in 2003, Beyond Celiac is the leading catalyst for a cure for celiac disease in the United States, which serves as a patient advocacy and research-driven organization working to advance diagnosis and accelerate discovery of new treatments. By partnering with the best scientists in the field, making the right investments in research, and supporting the broad community of people with celiac disease and gluten sensitivity, Beyond Celiac envisions a world where people can live healthy lives and eat fearlessly. – a world beyond celiac disease. www.BeyondCeliac.org

Media contact:
Angela Miller319.331.5090
[email protected]

Claire Bakker267.419.2111
[email protected]

    1. Choung, RS, Unalp-Arida, A., Ruhl, CE, Brantner, TL, Everhart, JE, & Murray, JA (2017). Less hidden celiac disease but increased gluten avoidance without diagnosis in the United StatesProcedures Mayo Clinic92(1), 30-38. https://doi.org/10.1016/j.mayocp.2016.10.012

SOURCE beyond celiac disease

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