Roscoe | Faculty Fellow Pilot Project

Project Title

Voices of Celiac Disease: Exploring the Role of Communication in Condition Management

Project Leader

Rikki Roscoe, Assistant Professor, Department of Communication Studies

Project Summary

Celiac Disease (CeD) is a chronic autoimmune disease characterized by small intestinal inflammation and damage from gluten ingestion. CeD impacts 1 in 100 people worldwide, including 3 million Americans (Celiac Disease Foundation, n.d.). Like many other autoimmune diseases, diagnosis is more common in women than men. It is estimated that up to 83% of Americans who have CeD are undiagnosed or misdiagnosed (Beyond Celiac, 2024). This is concerning, considering delayed diagnosis can lead to reproductive conditions, neurological disorders, cancer, and other autoimmune diseases. Because CeD remains uncurable, condition management, which involves strict adherence to a gluten-free diet (GFD), is of the utmost importance. However, only 30-50% of patients maintain a good adherence to a GFD (Mehtab, 2024). Ultimately, investing in disease management and broadening our understanding of the factors that limit a GFD is vital. The social dimensions of CeD are often overlooked despite having major implications for disease management and overall well-being. Using a communication perspective and qualitative methods, including photovoice (using photography in tandem with interviews to help people document, reflect on, and share their experiences), this project will explore various facets of people’s lived experiences and management of CeD, including disclosure, disease-related misconceptions and stigma, and (un)helpful social support. Indeed, CeD requires constant disclosure of an invisible condition to others (partners, employers, and strangers). Further, a GFD is stigmatized as a ‘fad’ diet and may not be taken seriously by others, which may be especially impactful for women who may face unique gendered social sanctions. Finally, people with CeD may lack social support or receive unhelpful support as a result of misconceptions and lack of education about the disease. All of these social factors contribute to poor disease management, increased risk for expensive comorbidities, and decreased quality of life. Ultimately, this project will inform educational and destigmatizing campaigns and best practices for disclosure and social support. These practical implications can lead to greater awareness and education as well as better coping and diet adherence. Further, these qualitative projects can gather an in-depth, rich understanding of an understudied condition that will open the door to interdisciplinary collaborations involving big data and additional funding opportunities.