Key Sources of Information and Support for Adults With Coeliac Disease: Coeliac Associations, Dietitians, Social Media and Cookbooks.

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.