J Pediatr Gastroenterol Nutr. 2024 Aug 16. doi: 10.1002/jpn3.12321. Online ahead of print.

Andrew Krueger ¹, Lisa Fahey ^2 3, Qin Sun ⁴, Stephanie Regis ⁵, Nasim Khavari ⁶, Hilary Jericho ⁶, Vahe Badalyan ⁷, Imad Absah ⁸, Ritu Verma ⁹, Maureen M Leonard ^10 11, Vanessa Weisbrod ¹², Temara Hajjat ¹³, Dale Lee ¹⁴, Mary Shull ¹⁵, Jocelyn A Silvester ¹², Daniel Mallon ¹³; RAISE-CD

Collaborators

• RAISE-CD: 

Arunjot Singh ¹⁶, Bradley Cutter ¹⁷, Camila Khorrami ¹⁸, Catherine Raber ¹⁹, Edwin Liu ²⁰, Elizabeth Gleeson ²¹, Kat V Adams ¹⁶, Lauren Johnson ¹⁷, Ling Fan ²², Lydia Ramharack ¹⁶, Madeline Ford ¹⁸, Marisa G Stahl ²⁰, Meghan Landry ²³, Monique Germone ²⁰, Mason Nuding ¹⁸, Pooja Mehta ²⁰, Rachel Andrews ²⁰, Supriya Behl ⁸, Taylor Morson ²¹, Tracy Ediger ²², Victoria Kenyon ²¹, Zachary Kramer ¹⁸

Author information

¹Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.

²Division of Gastroenterology, Hepatology, and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

³Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

⁴Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.

⁵Division of Pediatric Gastroenterology, Hepatology and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA.

⁶Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Celiac Disease Center, Stanford University, Lucile Packard Children's Hospital, Palo Alto, California, USA.

⁷Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia, USA.

⁸Division of Pediatric Gastroenterology Hepatology and Nutrition, Mayo Clinic, Rochester, Minnesota, USA.

⁹Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, The University of Chicago, Chicago, Illinois, USA.

¹⁰Department of Pediatrics, Harvard Medical School, Division of Pediatric Gastroenterology and Nutrition, Mass General Hospital for Children, Boston, Massachusetts, USA.

¹¹Harvard Medical School, Center for Celiac Research and Treatment, Massachusetts General Hospital, Boston, Massachusetts, USA.

¹²Department of Pediatrics, Harvard Medical School, Harvard Celiac Research Program, Boston Children's Hospital, Boston, Massachusetts, USA.

¹³Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.

¹⁴Seattle Children's Hospital, University of Washington School of Medicine, Seattle, Washington, USA.

¹⁵Department of Pediatrics, Colorado Center for Celiac Disease, Digestive Health Institute, Children's Hospital Colorado, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.

¹⁶Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

¹⁷Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati, Ohio, USA.

¹⁸Seattle Children's Hospital, Seattle, Washington, USA.

¹⁹Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, Washington, District of Columbia, USA.

²⁰Digestive Health Institute, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, USA.

²¹MassGeneral Hospital for Children, Boston, Massachusetts, USA.

²²Department of Clinical Pediatrics, The Ohio State College of Medicine, and Division of Gastroenterology, Hepatology, and Nutrition, Nationwide Children's Hospital, Columbus, Ohio, USA.

²³Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, Chicago, Illinois, USA.

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.