73% of celiac disease patients still exposed to gluten every year

September 13, 2022

A recent survey of the celiac disease community by Beyond Celiac reveals the ongoing challenges those with the disease are facing on National Celiac Disease Awareness Day, September 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.

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