Six hundred and seventy-five adults with coeliac disease completed an online survey. Coeliac UK, dietitians, cookbooks and online recipes and other people with coeliac disease were considered extremely/very useful by the majority. Only 15% reported GPs to be extremely/very useful. Participants reported that social media was very useful, however, it also included incorrect information.
ABSTRACT
Introduction
There is variable and often inadequate access to dietitians with expertise in coeliac disease (CeD) and limited data on where patients access support for their only treatment: adhering to a gluten-free diet. This study aimed to provide an up-to-date report of where adults with CeD source useful information.
Methods
A cross-sectional online survey was undertaken during 2024. The survey was designed by specialist dietitians and a gastroenterologist. Questions addressed diagnosis, demographics, sources of gluten‑free diet information, their perceived usefulness, and exposure to inaccurate information. Adults with CeD were recruited through a customer database of GF foods in the UK and via social media.
Results
Data from 675 adults with CeD showed that a high proportion rated information from coeliac associations (74%), peers with CeD (61%), cookbooks (56%), dietitians (50%), and the internet (52%) as highly useful, whereas only 15% reported information from General Practitioners (GPs) as highly useful. Among participants who regularly used social media (n = 360), 87% reported feeling connected to the CeD community; primary motivations for using social media were seeking peer support, gluten‑free recipes, information on new foods, dining options, and travel. However, nearly half (46%) indicated that they had received or accessed incorrect information via social media. Only 20% reported following a dietitian on social media.
Conclusion
Coeliac associations remain a highly valued source of information and support. Social media is also widely used by adults with CeD, highlighting the need for greater dietitian engagement on these platforms as part of patient education and ongoing support.
Journal of Human Nutrition and Dietetics, Volume 39, Issue 1, February 2026. Read More