73% of Celiac Disease Patients Still Exposed to Gluten Every Year

CD is a serious autoimmune disorder where the ingestion of gluten (a protein found in wheat, rye, and barley) leads to damage of microvilli (helps in the absorption of nutrients) present in the small intestine.

A recent survey of the celiac disease community by Beyond Celiac, the leading catalyst for a celiac disease cure, reveals the ongoing challenges those with the disease are facing on National Celiac Disease Awareness Day, Sept. 13, and the overwhelming desire for new treatments and a cure.

The only current celiac disease treatment, which is only partially effective, is to follow a strict, gluten-free diet. However, the survey of 1,255 Americans who have been diagnosed with celiac disease by a medical provider showed that while 93% of respondents never intentionally eat gluten, nearly 73% still have exposure to gluten each year, resulting in symptoms. 36% report accidentally ingesting gluten as often as 1-5 times a month. Over 66% of respondents have very severe or bad symptoms as a result of gluten exposure, with gastrointestinal (84%), neurological (56%) and psychological (40%) symptoms being the most common.

“Although necessary as the only option for now, following a gluten-free diet is burdensome, not fully effective, and can negatively impact day-to-day living in a world full of gluten,” said Alice Bast, Beyond Celiac CEO. “We need real therapies and a cure for celiac disease so that those with the disease can live full lives and eat without fear.”



Survey respondents say gluten-free food is expensive (80%) and dining out is difficult due to lack of gluten-free options (91%), causing an even bigger barrier to socializing and living normally. Almost two-thirds (61%) of respondents said there should be therapeutic treatments instead of, or in addition to, the gluten-free diet.

“As we continue our mission to advance research and find a cure, we want the public to have a better understanding of celiac disease as a serious disease and the implications of living with this devastating condition,” said Bast.

Often misunderstood and frequently misdiagnosed, celiac disease remains a mystery for many. A nationwide benchmark survey of the general public conducted earlier this year by The Harris Poll on behalf of Beyond Celiac revealed that only half of Americans (50%) know anything about celiac disease and/or gluten sensitivity. The report on The Harris Poll survey, “The Mystery of Celiac Disease: The Need for Greater Awareness and Accelerating the Quest for a Cure” can be found at www.beyondceliac.org/2022celiacreport. The report also presents facts about the disease and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.


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 brain damage, infertility and some types of cancer. Celiac disease affects one in 133 Americans.1

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.

73% of Celiac Disease Patients Still Exposed to Gluten Every Year

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