First national benchmark report on celiac disease beyond celiac disease shows wide misunderstanding of this serious autoimmune disease

PHILADELPHIA CREAM, May 16, 2022 /PRNewswire/ — Often misunderstood and frequently misdiagnosed, celiac disease remains a mystery to many. According to a recent national benchmark survey conducted by The Harris Poll on behalf of celiac beyondmain catalyst for the cure of 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, leading to debilitating symptoms and, if left untreated, can lead to a number of serious, long-term health issues, including infertility and certain types of cancer. Celiac disease affects one in 133 Americans.I

There are currently no drugs 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%) agreed 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 exposure to gluten is something that concerns all of us living with celiac disease,” said Beyond Celiac’s CEO. Alice Bast. “If more Americans understood how dangerous gluten can be for someone with celiac disease, it would be a big step forward for our community to live fully and eat without fear.”

Other key findings include:

  • Only a third (32%) realize that half (50%) or more of people with celiac disease go undiagnosed.
  • Two-thirds (61%) of Americans are “not at all sure” about the conditions that untreated celiac disease can cause, such as depression and anxiety; anemia; brain fog, migraines and other neurological disorders; infertility; certain 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%) mistakenly think there is medicine that prevents a reaction to gluten, while one in 10 (10%) mistakenly think there is medicine that cures celiac disease .
  • Only 49% of Americans know that a celiac person who strictly follows the gluten-free diet still needs to worry about celiac disease symptoms or related health issues.

“The fact that this survey has shown that half of Americans are unaware of this disease is alarming,” Bast commented. “Black Americans (63%) are significantly more likely than Hispanic Americans (49%) and White Americans (47%) to be unaware of celiac disease and/or gluten sensitivity, suggesting Potential Health Inequalities in Diagnosis and Treatment We know that equal access to health care information, diagnosis and treatment is a concern, and these findings highlight these potential disparities .It is important for all Americans to understand the symptoms of celiac disease so they can be advocates for their own health, including getting an accurate diagnosis and the treatment needed to live a healthy life,” she added.

The full report on the results of the investigation, “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 Survey Report. The report also presents the facts about the disease and describes how Beyond Celiac is taking steps to accelerate the search for a cure.

Survey methodology
This survey was conducted online in United States by The Harris Poll on behalf of Beyond Celiac of February 8-10, 2022 among 2,039 adults aged 18 and older. The sampling precision of Harris online polls are measured using a Bayesian credibility interval. For this study, the sample data is accurate to +2.8 percentage points using a 95% confidence level. For full survey methodology, including weighting variables and subgroup sample sizes, please contact [email protected]

About Beyond Celiac Disease
Founded in 2003, Beyond Celiac is the leading catalyst for the cure of celiac disease in United States, serving as a patient advocacy and research organization focused on diagnosing and accelerating the discovery of new treatments. By engaging with the best scientists in the field, making the right investments in research, and supporting the vast community of people with celiac disease and gluten sensitivity, Beyond Celiac envisions a world in which people can live a healthy life and eat without fear – a celiac world beyond.

Media Contact:
Angela Miller319.331.5090
[email protected]

Claire Boulanger267.419.2111
[email protected]

    1. Choung, RS, Unalp-Arida, A., Ruhl, CE, Brantner, TL, Everhart, JE and Murray, JA (2017). Less hidden celiac disease but increased avoidance of gluten without diagnosis in United States. Mayo Clinic Proceedings, 92(1), 30–38.

SOURCE Beyond Celiac Disease

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