P3195 - Frequency and Severity of Gastrointestinal and Extra-Gastrointestinal Manifestations of Celiac Disease: Data From the Go Beyond Celiac Patient Registry

Erin B. P.. Miller, MPH, Jordan Dubow, MD, Kate Avery, MPH, Amy Ratner, BA, Debra G.. Silberg, MD, PhD, FACG
Beyond Celiac, Ambler, PA

Introduction: Celiac disease (CeD) is a T cell mediated autoimmune enteropathy that affects approximately 1.5% of the population. Although gastrointestinal (GI) signs and symptoms (e.g., nausea, bloating, abdominal pain, diarrhea) are prominent, extra-GI manifestations, especially of the central nervous system (CNS), have been reported in patients with CeD. The purpose of this study is to quantify the frequency and severity of GI and extra-GI symptoms after gluten exposure in patients with CeD.

Methods: An online survey was taken by adult participants (≥ 18) with CeD registered in the Go Beyond Celiac patient registry, maintained by a United States-based patient advocacy organization. Questions were related to symptoms and their perceived severity after gluten exposure. Responses from participants who completed the survey were tabulated and descriptive analyses were performed. For each symptom, the percentage of symptomatic participants having that symptom was multiplied by the percentage of participants rating that symptom as "severe" or "very severe" to calculate a frequency-severity score on a scale from 0 to 100. This study was approved by North Star Review Board, Protocol #NB100009.

Results: A total of 462 participants completed the survey (see Table 1 for participant demographics). 412 participants (89.2%) indicated that they experience symptoms when they are exposed to gluten. Tiredness or little energy had the highest frequency-severity score following gluten exposure (49.8). This was followed by abdominal pain or discomfort (42.4), diarrhea (40.0), abdominal bloating (33.5), and brain fog or difficulty concentrating (30.3). Other CNS symptoms included in the top ten frequency-severity ranking were anxiety (23.8) and headache or migraine (23.5).

Discussion: Both GI and CNS manifestations occur following gluten exposure in patients with CeD. When factoring the frequency and severity of these symptoms, neurological and psychiatric symptoms are common and severe, likely contributing to impaired quality of life. Patient reported outcomes are necessary in clinical practice and as endpoints in clinical trials for treatments of CeD. CNS manifestations should be considered when evaluating patients with CeD.


Disclosures:


Erin B. P.. Miller, MPH, Jordan Dubow, MD, Kate Avery, MPH, Amy Ratner, BA, Debra G.. Silberg, MD, PhD, FACG. P3195 - Frequency and Severity of Gastrointestinal and Extra-Gastrointestinal Manifestations of Celiac Disease: Data From the Go Beyond Celiac Patient Registry, ACG 2024 Annual Scientific Meeting Abstracts. Philadelphia, PA: American College of Gastroenterology.