Unraveling Celiac Disease Symptoms, Diet Adherence, and Quality of Life

Celiac.com 02/08/2024 - Living with celiac disease often means navigating a complex landscape of symptoms, dietary restrictions, and the quest for an optimal quality of life. 

Understanding Patterns Behind Persistent Celiac Symptoms

Celiac disease is not a one-size-fits-all condition. A subgroup of adults experiences persistent symptoms, both gastrointestinal and extraintestinal, the origins of which are often elusive. A team of researchers recently conducted an observational study to uncover patterns within this diverse symptom landscape and explore their connections to gluten-free diet adherence, mental health, and quality of life.

Celiac.com Sponsor (A12):
The research team included Cara Dochat, Niloofar Afari, Rose-Marie Satherley, Shayna Coburn & Julia F. McBeth. They are variously affiliated with San Diego State University/University of California San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA; the VA San Diego Healthcare System, San Diego, CA, USA; the University of California San Diego, La Jolla, CA, USA; the Department of Psychological Interventions, University of Surrey, Guildford, UK; the Children’s National Health System, Washington, DC, USA; the George Washington University School of Medicine & Health Sciences, Washington, DC, USA; and the Celiac Disease Foundation, Woodland Hills, CA, USA.

The Study in Focus

Their study included 523 U.S. adults with self-reported, biopsy-confirmed celiac disease. Participants voluntarily completed a set of questionnaires addressing various aspects of their condition:

• Celiac Symptoms Index (CSI): Capturing physical symptoms and subjective health.
• Celiac Dietary Adherence Test: Assessing adherence to a gluten-free diet.
• PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey: Exploring psychiatric symptoms and quality of life.

Latent profile analysis identified four distinct symptom profiles:

• Little to No Symptoms (37%): Individuals in this profile reported excellent subjective health and minimal symptoms.
• Infrequent Symptoms (33%): Experience relatively moderate symptoms with a focus on extraintestinal symptoms.
• Occasional Symptoms (24%): Moderate symptoms, particularly gastrointestinal, physical pain, and fair to poor subjective health.
• Frequent to Constant Symptoms (6%): Enduring significant symptoms and fair to poor subjective health.

Beyond Symptoms: The Mental Health and Quality of Life Equation

Interestingly, profiles did not significantly differ in terms of clinical characteristics, gluten-free diet adherence, or overall quality of life. However, distinctions emerged in mental health dimensions.

Profiles 2 and 3 reported moderate symptomology, with Profile 2 leaning toward more extraintestinal symptoms and Profile 3 showing a dominance of gastrointestinal symptoms, physical pain, and lower subjective health.

Profile 3, despite its moderate symptom burden, surprisingly reported the lowest psychiatric symptoms and the highest quality of life on standardized measures.

Implications and Future Directions

The study’s findings underscore the complexity of celiac disease, emphasizing that a one-size-fits-all approach may not be effective. Notably, even lower symptom burden did not always correlate with better mental health and quality of life, suggesting a need for nuanced behavioral interventions.

The lack of profile differences in gluten-free diet adherence implies the necessity for additional dietary or medical assessments and interventions. As we navigate the intricate terrain of celiac disease, personalized and comprehensive care emerges as a key consideration, addressing not only symptoms but also the broader aspects of mental health and overall well-being.

Read more in BMC Gastroenterology volume 24, Article number: 9 (2024)