Harris Poll 2022

The Annual Celiac Disease Landscape
A Report from Beyond Celiac

The Mystery of Celiac Disease: The Need for Greater Awareness and Accelerating the Quest for a Cure

Cover of a report titled The Mystery of Celiac Disease showing wheat stalks resting on open book pages, with the Beyond Celiac logo and the tagline Together for a Cure at the bottom.

Celiac disease is misunderstood, often misdiagnosed, sometimes not diagnosed for as long as 10 years or more, and there is no cure.

People can have celiac disease without even knowing it. Even those who don’t have symptoms may have celiac disease. It is one of those conditions in which, because every person is different, symptoms vary greatly from person to person.

To gain a better understanding of the knowledge and perceptions that Americans have about celiac disease, Beyond Celiac commissioned The Harris Poll to conduct a national benchmarking survey. The Harris Poll on behalf of Beyond Celiac was conducted online February 8-10, 2022 among 2,039 adults nationwide. It provides insight into how much Americans know about gluten sensitivity and celiac disease.

Celiac disease affects an estimated 3.2 million Americans, and it is time for greater understanding of the facts of the disease and of the need for finding a cure.

This report reveals what the survey shows regarding how much Americans don’t know about celiac disease, presents the facts about the disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.

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.

Six Key Takeaways

  1. Only half of Americans (50%) report knowing anything about celiac disease and/or gluten sensitivity.
  2. Only one-third (32%) realize that 50% or more of people with celiac disease are undiagnosed.
  3. Nearly 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.
  4. Only one-fourth (24%) of Americans understand that celiac disease is an autoimmune disease.
  5. Only half of Americans (53%) recognize that following a strict, 100% gluten-free diet (no wheat, barley or rye) is the only way someone with celiac disease can currently control it. Almost one in five (18%) incorrectly believed there is medicine that prevents a gluten reaction, while one in ten (10%) incorrectly thought there is a medicine that cures celiac disease.
  6. Only 49% of Americans know that someone with celiac disease who strictly follows the gluten-free diet still has to worry about experiencing celiac disease symptoms or health conditions caused by it.

Results are available for review/download

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A graphic states, 24% of Americans understand that celiac disease is an autoimmune disease, with a partial orange circle; logos for Beyond Celiac and the Beyond Celiac Report: 2022 appear at the bottom.
A circular graphic states that 49% of Americans with celiac disease on a strict gluten-free diet still worry about symptoms or health issues. Source: Beyond Celiac Report 2022. The Beyond Celiac logo is in the lower right corner.
A graphic states 61% of Americans are not at all sure about conditions linked to untreated celiac disease, listing anemia, neurological disorders, infertility, and certain cancers. The image credits Beyond Celiac Report: 2022.
A circular graph shows that 32% of Americans know that at least 50% of people with celiac disease are undiagnosed. The image cites the Beyond Celiac Report: 2022 and features the Beyond Celiac logo in the lower right.
Infographic titled The mystery of celiac disease states only 50% of Americans know about celiac disease/gluten sensitivity. It lists celiac facts and promotes a report by Beyond Celiac, with a report image and website link.
Infographic titled The Mystery of Celiac Disease highlights low awareness and understanding of celiac disease among Americans, and lists facts such as it being an autoimmune disease without a cure and often taking years to diagnose.
Infographic titled The Mystery of Celiac Disease shows three statistics: 50% know about celiac disease or gluten sensitivity, 49% of those with celiac still worry about symptoms, and 24% know it is an autoimmune disease.
An infographic titled The Mystery of Celiac Disease shows percentages of Americans knowledge: 50% know about celiac disease/gluten sensitivity, 49% know symptoms persist with the diet, and 24% know it’s an autoimmune disease.