Clinical presentation and factors associated with gluten exposure in children with celiac disease

Andrew Krueger, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
Lisa Fahey, Division of Gastroenterology, Hepatology, and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Qin Sun, Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Stephanie Regis, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA.
Nasim Khavari, Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Celiac Disease Center, Stanford University, Lucile Packard Children's Hospital, Palo Alto, California, USA.
Hilary Jericho, Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Celiac Disease Center, Stanford University, Lucile Packard Children's Hospital, Palo Alto, California, USA.
Vahe Badalyan, Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia, USA.
Imad Absah, Division of Pediatric Gastroenterology Hepatology and Nutrition, Mayo Clinic, Rochester, Minnesota, USA.
Ritu Verma, Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, The University of Chicago, Chicago, Illinois, USA.
Maureen M. Leonard, Department of Pediatrics, Harvard Medical School, Division of Pediatric Gastroenterology and Nutrition, Mass General Hospital for Children, Boston, Massachusetts, USA.
Vanessa Weisbrod, Department of Pediatrics, Harvard Medical School, Harvard Celiac Research Program, Boston Children's Hospital, Boston, Massachusetts, USA.
Temara Hajjat, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
Dale Lee, Seattle Children's Hospital, University of Washington School of Medicine, Seattle, Washington, USA.
Mary Shull, Department of Pediatrics, Colorado Center for Celiac Disease, Digestive Health Institute, Children's Hospital Colorado, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Jocelyn A. Silvester, Department of Pediatrics, Harvard Medical School, Harvard Celiac Research Program, Boston Children's Hospital, Boston, Massachusetts, USA.
Daniel Mallon, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.

Document Type

Journal Article

Publication Date

8-16-2024

Journal

Journal of pediatric gastroenterology and nutrition

DOI

10.1002/jpn3.12321

Keywords

epidemiology; self‐management; treatment adherence and compliance

Abstract

OBJECTIVES: The prevalence of celiac disease (CeD) is increasing, yet it is still underdiagnosed, in part because of its heterogeneous presentation. Diagnostic criteria are evolving and management with strict adherence to a gluten-free diet is challenging for many. We aimed to characterize the clinical presentation of CeD among a large multicenter cohort of pediatric patients and to identify factors associated with gluten-free diet adherence. METHODS: Patients with CeD aged 0-18 years were recruited from 11 United States health centers. Parents completed surveys about gluten-free diet adherence and patient electronic health records were reviewed. Logistic regression analyses were performed to identify risk factors associated with gluten exposure. RESULTS: Charts were reviewed for 460 children with a median age of 6.4 years. Abdominal pain was reported in 57% of the cohort, but diverse symptoms were identified. Parent surveys were completed for 455 participants. Sixty-five (14%) participants were at high risk for gluten exposure based on parental reports of weekly or daily gluten exposure or eating gluten by choice in the past year. Participants under the age of 5 years had a lower risk of gluten exposure, while participants without repeat serology testing 18 months after initial diagnosis were at higher risk of gluten exposure. CONCLUSIONS: In a large, multicenter cohort of pediatric CeD patients, clinical presentation is highly variable, necessitating a high index of suspicion to make a diagnosis. Parent surveys indicate that 14% of patients are at high risk of gluten exposure, with patient age and lack of close follow-up associated with gluten-free diet adherence.

Department

Pediatrics

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