PHILADELPHIA, June 12, 2024 /PRNewswire/ — Only 14% of American parents with a child under 18 understand that many kids with celiac disease do not have stomach issues, according to a nationwide survey conducted online among 2,074 U.S. adults January 9-11, 2024, by The Harris Poll on behalf of Beyond Celiac, the leading catalyst for a celiac disease cure. The survey also found nearly one-third (32%) of American parents with a child under 18 mistakenly believe that a little bit of gluten won’t hurt a child with celiac disease.
“Celiac disease is a very mysterious disease,” Alice Bast, founder and CEO of Beyond Celiac, says. “Studies show that up to 83% of people with celiac disease are either undiagnosed or misdiagnosed with other conditions.1 Additionally, one in 133 Americans has celiac disease, according to the landmark prevalence study on the disease,2 which also determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic.”
Currently there are no medications to treat celiac disease and there is no cure. A serious genetic autoimmune condition, celiac disease is triggered by consuming gluten (wheat, barley and rye). For someone with celiac disease, eating gluten damages the villi of the small intestine and interferes with the absorption of nutrients from food. Left untreated, celiac disease can lead to serious, long-term health problems including infertility, lymphoma and other types of cancer, additional autoimmune problems and/or a range of life-threatening medical conditions. Following a 100% gluten-free diet (no wheat, barley or rye), which may not fully offset the health risks of the disease, is the only way people with celiac disease can get by on a daily basis.
“It is hard enough being an adult with celiac disease, living in a world where the only option for avoiding sickness is following a strict gluten-free diet and having to consistently be on guard to make sure you don’t accidentally ‘get glutened’,” Bast explains. “So, it has to be even more challenging for children, especially those who are younger and do not understand why they cannot have the cake at their friend’s birthday party,” she adds.
Other key findings from the survey revealing misunderstandings of the disease include:
- Nearly one-third (32%) of parents with a child under 18 mistakenly believe that it is fine for a child with celiac disease to eat food served at birthday parties, snacks after their sports team game, and other special occasion situations even though it is not gluten-free because it’s not a daily occurrence.
- Only one-fifth (21%) of parents with children under 18 are aware that the average time a person waits to be correctly diagnosed with celiac disease is 6 to 10 years.
- Just over one-third (38%) of parents with a child under 18 know that children who get accurately diagnosed with celiac disease and go on the gluten-free diet may still have co-related health conditions.
- Only about a quarter of Americans (24%) realize that family members of people with celiac disease could have it without even knowing it.
- Nearly one-third (32%) of parents with a child under 18 mistakenly believe that a little bit of gluten won’t hurt a child with celiac disease.
“Beyond Celiac vowed three years ago to accelerate treatments leading to a cure by 2030. We are continuing to lead the way so that the 3.2 million children and adults diagnosed with the disease can live healthy lives and eat without fear of gluten exposure,” Bast says. “If more Americans understood how dangerous gluten can be for a person with celiac disease, it would be a big step forward for those with celiac disease to be able to live life to the fullest and eat without fear.”
The full report on the survey results, “Pediatric Celiac Disease: Fact and Fiction: What Americans Misunderstand About Kids Getting Diagnosed and Living with It” can be found at 2024 Beyond Celiac Harris Poll Report. The report also presents the facts about pediatric celiac disease, and outlines how Beyond Celiac is taking steps to accelerate the quest for a cure.
Survey Methodology
This survey was conducted online within the United States by The Harris Poll on behalf of Beyond Celiac from January 9-11, 2024, among 2,074 U.S. adults ages 18 and older. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within +/- 2.8 percentage points using a 95% confidence level. For complete survey methodology, including weighting variables and subgroup sample sizes, please contact [email protected].
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. BeyondCeliac.org.
1Whitburn, J., Rao, S. R., Paul, S. P., & Sandhu, B. K. (2021) Diagnosis of celiac disease is being missed in over 80% of children particularly in those from socioeconomically deprived backgrounds. European Journal of Pediatrics, 180(6), 1941–1946. https://doi.org/10.1007/s00431-021-03974-8
2Choung, R. S., Unalp-Arida, A., Ruhl, C. E., Brantner, T. L. Everhart, J. E., & Murray, J. A. (2017). Less hidden celiac disease but increased gluten avoidance without a diagnosis in the United States. Mayo Clinic Proceedings, 92(1), 30–38. https://doi.org/10.1016/j.mayocp.2016.10.012
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SOURCE Beyond Celiac
