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Letter from Alice: Making Your Voice Heard at ICDS
In October it was my extreme privilege to share original research from Beyond Celiac with a worldwide audience at the International Celiac Disease Symposium (ICDS) in Sorrento, Italy. ICDS, which takes place every other year in a different country around the world, is a forum where scientists, clinicians, patients associations and industry meet to exchange knowledge and foster cooperation.
Beyond Celiac took the lead in presenting the patient perspective in two poster sessions, one about celiac disease symptoms and the other about effectiveness of the gluten-free diet. Our research indicates that those with celiac disease report having more than just gastrointestinal symptoms when they are exposed to gluten and that there is growing dissatisfaction with the gluten-free diet as a sufficient treatment.
The Beyond Celiac symptoms poster is based on an online survey taken by more than 2,200 adult participants registered in the Go Beyond Celiac patient registry. About 98% of the 2,000 symptomatic participants reported having gastrointestinal symptoms and about 96& reported non-gastrointestinal symptoms.
The most common gastrointestinal symptoms were abdominal pain or discomfort, abdominal bloating, gas, and diarrhea. The most common non-gastrointestinal symptoms were brain fog, fatigue, irritability, and headaches. Most participants with symptoms reported a combination of gastrointestinal and other symptoms. This research can help drive diagnosis by broadening the understanding of what celiac disease looks like, and help our community manage living with celiac disease by highlighting non-typical symptoms of gluten exposure.
The second poster, based on two community surveys taken by Beyond Celiac eight years apart, shows that celiac disease patient attitudes about the gluten-free diet have shifted significantly in the last decade. Survey participants who agreed “a great deal” that the gluten-free diet is an adequate treatment has decreased by more than half. In 2014, of the 1,460 survey participants, about 27% agreed compared to about 12% of the 1,140 who answered the survey in 2022. Meanwhile, the proportion of participants who agreed “not at all” that the gluten-free diet was a sufficient treatment increased from about 13% in 2014 to about 23% in 2022.
Because Beyond Celiac has been connecting with you, our community, listening, and amplifying our collective voice for nearly 20 years, we are able to demonstrate the changing perceptions of what it means to be living with celiac disease. We will keep on advocating for our community with regulatory agencies, food companies and researchers until we have treatments beyond the gluten-free diet and can eat without fear and live our lives to the fullest.
I want to extend my thanks to the Beyond Celiac staff who did the research and submitted it for consideration—Kate Avery, MPH, Maria Luci, Erin Miller, MPH, and Claire Baker. We are truly a team, and we are Together for a Cure.
If you would like to help us continue to accelerate important research like this, please consider donating to Beyond Celiac this Giving Tuesday, November 29, 2022.
Together for a cure,
—Alice Bast
