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Pediatric Nonceliac Gluten Sensitivity

A Gluten-related Disorder Treatment Center Experience

Camhi, Stephanie S.*,†; Sangal, Kajal; Kenyon, Victoria; Lima, Rosiane; Fasano, Alessio†,§; Leonard, Maureen M.†,§

Journal of Pediatric Gastroenterology and Nutrition: August 2019 - Volume 69 - Issue 2 - p 200–205
doi: 10.1097/MPG.0000000000002335
Original Articles: Gastroenterology: Celiac Disease

Objective: The aim of the study was to identify the prevalence and clinical characteristics of children with nonceliac gluten sensitivity (NCGS) presenting to a tertiary care center specialized for evaluation of gluten-related disorders.

Methods: The medical records of all patients aged 0 to 18 years who presented to our center over a 4-year period (July 2013–June 2018) and consented to participate in our research registry were reviewed. Patients meeting the clinical criteria for NCGS were reviewed in detail.

Results: Among 500 pediatric patients who volunteered to participate in the registry during the study period, we identified 26 (5.2%) with NCGS. Both gastrointestinal and extraintestinal symptoms associated with gluten ingestion were common with abdominal pain (57.7%), bloating (53.9%), rash (53.9%), diarrhea/loose stool (42.3%), and emotional/behavioral issues (42.3%) emerging as the predominant complaints. In addition, children with NCGS demonstrated a high personal history (61.5%) and family history (61.5%) of concomitant allergic/atopic disease.

Conclusions: Even within our highly specialized population of patients with a suspected gluten-related disorder, pediatric NCGS is relatively uncommon. The estimated prevalence and clinical features mirror those previously reported in a similarly highly selective population of adults. In the absence of celiac disease, clinical suspicion for NCGS should arise in a child with gastrointestinal and/or extraintestinal complaints alleviated with gluten removal and considered in symptomatic patients with associated allergic/atopic disease. Proper and adequate exclusion of celiac disease and other potential causes of the clinical complaints is essential to justify adoption of the gluten-free diet according to an appropriate stringency and with dietitian supervision to avoid nutritional deficiencies.

*Miller School of Medicine, University of Miami, Miami, FL

Center for Celiac Research and Treatment, Pediatric Gastroenterology and Nutrition, Mass General Hospital for Children

Boston University School of Medicine

§Celiac Research Program, Harvard Medical School, Boston, MA.

Address correspondence and reprint requests to Maureen M. Leonard, MD MMSc, Clinical Director, Center for Celiac Research and Treatment, Instructor in Pediatrics, Harvard Medical School, MassGeneral Hospital for Children | Pediatric Gastroenterology and Nutrition, Outpatient Clinic, Yawkey 6B-6800, 55 Fruit St, Boston, MA 02114 (e-mail:

Received 19 September, 2018

Accepted 14 February, 2019

A.F. is a stock holder at Alba Therapeutics, serves as a consultant for Inova Diagnostics and Innovate Biopharmaceuticals, is an advisory board member for Axial Biotherapeutics and Ubiome, and has a speaker agreement with Mead Johnson Nutrition. The remaining authors report no conflicts of interest

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,