Where do adults with celiac disease turn for information and support? A new study published in the Journal of Human Nutrition and Dietetics offers a clear answer: trusted education and access to knowledgeable dietitians are essential for living well on a gluten-free diet and managing their disease long-term.
In this new study, researchers surveyed 675 adults with celiac disease and found that patients rely heavily on celiac associations, peers, cookbooks, dietitians, and online resources to manage their condition. Notably, 74% of participants rated information from celiac associations as highly useful, and 50% rated dietitians as highly useful sources of guidance. At the same time, nearly half of social media users reported encountering incorrect information online, underscoring the need for trusted, evidence-based education in digital spaces.
“Patients are increasingly turning to online spaces for advice and connection, which can be empowering but also exposes them to misinformation,” said Yvonne Jeanes, dietitian, Head of Research and Impact at the British Dietetic Association and an author on the paper. “This highlights the urgent need for healthcare professionals and dietitians to have a stronger presence in patient education, both in clinics and online.”
Celiac disease is unique in that the only treatment is strict, lifelong adherence to a gluten-free diet. That requires more than simply avoiding bread or pasta. It involves understanding cross-contact risks, label reading, dining out safely, and maintaining balanced nutrition. The study highlights that many patients feel they receive limited guidance at diagnosis and often seek out information on their own, particularly through online communities. While peer support can be empowering, it can also expose patients to misinformation.
This is where structured, expert-led education becomes critical. At the Celiac Disease Foundation, patient education is a core part of our mission. We are committed to ensuring that individuals and families have access to reliable, science-based information that supports both safety and quality of life. One of the ways the Foundation actively addresses this gap through our Celiac Disease Foundation Dietitian Advisory Council (CDF-DAC) and our in-house clinical expertise. Our CDF-DAC brings together leading registered dietitians with deep experience in celiac disease and the gluten-free diet. Their guidance informs our educational programs, patient resources, and professional training initiatives, ensuring that everything we publish reflects current best practices.
The CDF-DAC recently launched the Foundations of Celiac Disease program, which is a free, expert-led virtual education series designed to support individuals navigating life with celiac disease. This class is particularly appropriate for those who are newly diagnosed and do not have access to specialized celiac disease care or nutrition counseling. Thousands of patients have signed up for the first cycle of this program, highlighting the need for trusted nutrition education programming in the celiac disease community.
We are also fortunate to have two highly respected dietitians on our staff, Meghan Donnelly McKeon, MS, RD, CSDH and Anne Lee, EdD, RDN. Through webinars, educational materials, and community outreach, Meghan and Anne translate complex nutrition science into practical tools that patients can use in their daily lives. Their work exemplifies how specialized dietitian support can reduce confusion, build confidence, and improve long-term adherence to the gluten-free diet.
The study shows that social media is now a major source of connection and information for people with celiac disease. Most regular users reported feeling more connected to the celiac community online, but many also encountered inaccurate advice.
The Foundation recognizes that education must extend beyond clinics and printed materials. By engaging in digital platforms, collaborating with dietitians, and amplifying evidence-based voices, we aim to provide trustworthy guidance in the spaces where patients are already seeking support. Our goal is not only to correct misinformation, but to foster a community where accurate, compassionate education is easy to find.
Learn more about our educational programs here: https://celiac.org/get-involved/virtual-education-events/