Poster Presentation International Celiac Disease Symposium 2026

Clinical, Functional, and Humanistic Burden of Celiac Disease (CeD) in Two Symptomatic Subgroups: A Multi-Stakeholder Qualitative Study in the United States of America (#332)

Snigdha Santra 1 2 , Daniel Leffler 1 3 4 , Shinta Kobayashi 1 5 , Peyton Walker 1 , Tai Hirakura 5 , Maiko Hirota 5
  1. Chugai Pharma USA, Inc., USA, New Jersey
  2. Columbia University Mailman School of Public Health, USA, New York
  3. Celiac Center, Beth Israel Deaconess Medical Center, USA, Boston
  4. Harvard Medical School, USA, Boston
  5. Chugai Pharmaceutical Co., Ltd, Japan, Tokyo

Background: CeD is primarily managed with a gluten-free diet (GFD), yet many patients remain symptomatic with a persistent functional burden despite strict adherence to the diet. Qualitative research comparing symptomatic CeD subgroups is limited.

Objectives: To characterize the patient journey, multidimensional burdens, and unmet needs in two CeD subgroups: Chronic Active (persistent symptoms despite GFD) and Episodic Symptomatic (flares after gluten exposure).

Methods: Nineteen U.S. adult CeD patients (9 Chronic Active, 10 Episodic) and 20 healthcare providers completed 6-day electronic diaries and semi-structured interviews. Data were thematically analyzed across patient journey stages (pre-diagnosis, diagnosis, daily management).

Results: Chronic Active participants reported persistent multisystem symptoms, frequent flares, incomplete post-exposure recovery, and substantial daily disruption. Episodic participants experienced intermittent gastrointestinal flares and reported greater confidence managing a GFD but had ongoing anxiety about accidental exposure and social restrictions. Patient-reported metrics (see Table) indicated Chronic Active patients more often had moderate-to-high daily disruption (7/9 vs 5/10) and a greater financial burden (mean 6.6 vs 5.2) than Episodic patients, who more frequently reported high confidence managing GFD (9/10 vs 5/9). Both subgroups emphasized constant vigilance (label checking, menu screening, carrying backup food) as a major burden. Clinicians highlighted the lack of therapeutic options beyond GFD as a key unmet need, particularly for patients who are symptomatic despite their diet. Across patients and clinicians, there was difficulty understanding and consistently applying terminology describing “chronic” versus “acute/episodic” CeD in qualitative research.

Conclusions: CeD symptoms and burdens often persist despite following a GFD. Chronic Active and Episodic patients have distinct experiences yet share unmet needs related to symptom control, social restrictions, and constant vigilance. Challenges with patient-segment terminology suggest a need for further research to develop clearer, patient-centered classifications.

Findings should be interpreted in context of the small U.S. sample and qualitative design

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