October 4, 2021 – Yesterday, at United European Gastroenterology Week (UEGW), researchers from the pharmaceutical company, Takeda, the University of Sheffield, Columbia University, Coeliac UK, and the Celiac Disease Foundation virtually presented a study entitled, Experiences of a gluten-free diet in patients with celiac disease: a multi-national survey. UEGW is the premier venue for researchers across the globe to present their latest findings.
401 patients with celiac disease from the USA, UK, Germany, and Spain were surveyed to better understand experiences and patient perception of celiac disease (CeD) while following a gluten-free diet (GFD).
- 82.8% of patients reported ‘always’ or ‘often’ adhering to a GFD, while less than 1% reported ‘never’ adhering to a GFD.
- Spanish patients had the highest proportion reporting ‘always’ or ‘often’ adhering to a GFD (94%) and the USA had the lowest proportion (76%).
- Among all patients rating their disease as severe, 70.0% reported ‘always’ adhering to a GFD, versus 32.3% of patients with mild CeD.
- 62.4% of UK patients (62.4%) reported experiencing associated CeD symptoms within the past month, compared with 60% of German patients, 57% of US patients and 49% of Spanish patients.
- More than a quarter (27.2%) of patients rated the difficulty of adhering to a GFD as ‘very much’ or ‘quite a bit,’ while 27.7% found it ‘somewhat’ difficult, 28.7% ‘a little’ difficult, and 16.5% ‘not at all’ difficult.
- Across all four countries, the most commonly reported challenges in maintaining a GFD were the cost of gluten-free products, the need to constantly plan meals and eating arrangements ahead of time, social restrictions, the risk of gluten cross-contamination, and the availability of gluten-free options.
The majority of patients in this study reported being adherent to a GFD, however, many patients reported difficulty maintaining GFD adherence with most experiencing accidental gluten exposure. Overall, this study consistently found that despite most patients adhering to a GFD, there were significant challenges and limitations to gluten avoidance in the four countries investigated, further highlighting the need for therapies beyond a gluten-free diet.
This is why we at the Celiac Disease Foundation are devoting enormous energy and resources toward finding alternative treatments to the gluten-free diet, and a cure, including building the iCureCeliac patient registry and actively participating in, and directly funding research.
If you would like to participate in celiac disease research, please add your data to iCureCeliac® to provide critical insights into your or your child’s life with celiac disease. Your participation will help create better diagnostic tools and treatments for cross-contact and gluten consumption, governmental policy changes, and access to new and innovative clinical trials nationwide, which may, one day, cure celiac disease.