Celiac disease can present with a variety of symptoms, spanning from gastrointestinal issues to headaches and chronic fatigue, to name a few. Even with strict adherence to a gluten-free diet (GFD), many individuals with celiac disease continue to grapple with these debilitating symptoms. The root cause of this persistence often remains elusive and may vary among patients.  

Using data from the Celiac Disease Foundation’s iCureCeliac® Patient Registry, a new observational study helps explain the relationship between persistent symptoms, GFD adherence, mental health, and quality of life. The study is published in BMC Gastroenterology and authored by Cara Dochat, PhD, Niloofar Afari, PhD, Rose-Marie Satherley, PhD, Shayna Coburn, PhD, and Julia McBeth, the Celiac Disease Foundation’s Director of Scientific Affairs.   

How did they do it? 

Using latent profile analysis (a way to identify groups of people with similar characteristics in data), the researchers identified symptom profiles and looked at whether these groups differed on GFD adherence, mental health, quality of life, and other important factors.  

What did they find? 

Researchers identified four patterns, and participants were grouped based on how they rated their symptoms and subjective health.    

  • Profile 1: Little to no symptoms and excellent subjective health, but with low energy and headaches (37% of sample)  
  • Profile 2: Infrequent symptoms and good subjective health, with more non-gastrointestinal symptoms (33%)  
  • Profile 3: Occasional symptoms and fair to poor subjective health with more gastrointestinal symptoms and physical pain and lower household income and education (24%)  
  • Profile 4: Frequent to constant symptoms and fair to poor subjective health with the most non-gastrointestinal and gastrointestinal symptoms and lower household income and education (6%)   

Profiles differed on anxiety and depression, limitations due to physical and emotional health, and social functioning, but they did not differ on GFD adherence. While both Profiles 2 and 3 reported moderate symptoms, Profile 2 had relatively more symptoms outside of the gut (e.g., fatigue) and Profile 3 had relatively more gastrointestinal symptoms, greater physical pain, and worse subjective health.   

Despite having moderate symptoms and poorer subjective health, Profile 3 surprisingly had the lowest psychiatric symptoms and the highest quality of life. Profile 3 reported fewer physical limitations, less fatigue, and less sleep disturbances than all other profiles, and better social functioning and greater emotional wellbeing than Profiles 1 and 4.   

What does this mean? What does this change? 

Since GFD adherence did not differ between groups, the researchers suggest that persistent symptoms may be due to non-responsive celiac disease or other conditions/food sensitivities in some patients. The results also suggest that overall higher symptom burden may not directly translate to worse quality of life. Instead, specific symptoms—such as fatigue, pain, and sleep disturbances—and coping skills or other protective factors may play a larger role for patients.   

Additional behavioral, dietary, or medical support may help to clarify and address the cause of persistent symptoms in people with celiac disease who follow a GFD. This study further underscores the need for a celiac disease treatment other than the gluten-free diet alone for those whose persistent symptoms are not explained by other co-occurring conditions.   

The Celiac Disease Foundation accelerates the search for better treatments and, one day, a cure for celiac disease through partnerships with biopharmaceutical companies to match patients with the right clinical trials for them, and by driving novel research through the iCureCeliac® patient registry.  

Dr. Dochat noted: “This study provides a new perspective on the need for continued high-quality medical care for people with celiac disease, even some years after diagnosis, and who generally adhere to a gluten-free diet. Our hope is that this study provides a foundation for additional research on causes for persistent symptoms.”  

Keep reading to learn more about the study.   

Your experience with celiac disease is critical to ongoing disease research efforts. Add your data to our iCureCeliac® patient registry today. iCureCeliac® is the Foundation’s patient-powered tool that is the single best resource for celiac disease researchers around the world, helping to accelerate the search for treatments and a cure. iCureCeliac® has powered numerous research studies about celiac disease and is the key contributor of patients to a number of critical clinical trials for celiac disease drugs.