Multicenter Study

. 2024 Oct;79(4):895-904.

doi: 10.1002/jpn3.12321. Epub 2024 Aug 16.

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

Andrew Krueger¹, Lisa Fahey^{2

3}, Qin Sun⁴, Stephanie Regis⁵, Nasim Khavari⁶, Hilary Jericho⁶, Vahe Badalyan⁷, Imad Absah⁸, Ritu Verma⁹, Maureen M Leonard^{10

11}, Vanessa Weisbrod¹², Temara Hajjat¹³, Dale Lee¹⁴, Mary Shull¹⁵, Jocelyn A Silvester¹², Daniel Mallon¹³; RAISE‐CD

Collaborators, Affiliations

Collaborators

RAISE‐CD:
Arunjot Singh¹⁶, Bradley Cutter¹⁷, Camila Khorrami¹⁸, Catherine Raber¹⁹, Edwin Liu²⁰, Elizabeth Gleeson²¹, Kat V Adams¹⁶, Lauren Johnson¹⁷, Ling Fan²², Lydia Ramharack¹⁶, Madeline Ford¹⁸, Marisa G Stahl²⁰, Meghan Landry²³, Monique Germone²⁰, Mason Nuding¹⁸, Pooja Mehta²⁰, Rachel Andrews²⁰, Supriya Behl⁸, Taylor Morson²¹, Tracy Ediger²², Victoria Kenyon²¹, Zachary Kramer¹⁸

Affiliations

¹ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
² Division of Gastroenterology, Hepatology, and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
³ Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
⁴ Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
⁵ Division of Pediatric Gastroenterology, Hepatology and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA.
⁶ Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Celiac Disease Center, Stanford University, Lucile Packard Children's Hospital, Palo Alto, California, USA.
⁷ Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia, USA.
⁸ Division of Pediatric Gastroenterology Hepatology and Nutrition, Mayo Clinic, Rochester, Minnesota, USA.
⁹ Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, The University of Chicago, Chicago, Illinois, USA.
¹⁰ Department of Pediatrics, Harvard Medical School, Division of Pediatric Gastroenterology and Nutrition, Mass General Hospital for Children, Boston, Massachusetts, USA.
¹¹ Harvard Medical School, Center for Celiac Research and Treatment, Massachusetts General Hospital, Boston, Massachusetts, USA.
¹² Department of Pediatrics, Harvard Medical School, Harvard Celiac Research Program, Boston Children's Hospital, Boston, Massachusetts, USA.
¹³ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
¹⁴ Seattle Children's Hospital, University of Washington School of Medicine, Seattle, Washington, USA.
¹⁵ Department of Pediatrics, Colorado Center for Celiac Disease, Digestive Health Institute, Children's Hospital Colorado, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
¹⁶ Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁷ Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati, Ohio, USA.
¹⁸ Seattle Children's Hospital, Seattle, Washington, USA.
¹⁹ Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, Washington, District of Columbia, USA.
²⁰ Digestive Health Institute, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, USA.
²¹ MassGeneral Hospital for Children, Boston, Massachusetts, USA.
²² Department of Clinical Pediatrics, The Ohio State College of Medicine, and Division of Gastroenterology, Hepatology, and Nutrition, Nationwide Children's Hospital, Columbus, Ohio, USA.
²³ Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, Chicago, Illinois, USA.

PMID: 39149789
PMCID: PMC12070468
DOI: 10.1002/jpn3.12321

Multicenter Study

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

Andrew Krueger et al. J Pediatr Gastroenterol Nutr. 2024 Oct.

. 2024 Oct;79(4):895-904.

doi: 10.1002/jpn3.12321. Epub 2024 Aug 16.

Authors

Collaborators

RAISE‐CD:
Arunjot Singh¹⁶, Bradley Cutter¹⁷, Camila Khorrami¹⁸, Catherine Raber¹⁹, Edwin Liu²⁰, Elizabeth Gleeson²¹, Kat V Adams¹⁶, Lauren Johnson¹⁷, Ling Fan²², Lydia Ramharack¹⁶, Madeline Ford¹⁸, Marisa G Stahl²⁰, Meghan Landry²³, Monique Germone²⁰, Mason Nuding¹⁸, Pooja Mehta²⁰, Rachel Andrews²⁰, Supriya Behl⁸, Taylor Morson²¹, Tracy Ediger²², Victoria Kenyon²¹, Zachary Kramer¹⁸

Affiliations

¹ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
² Division of Gastroenterology, Hepatology, and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
³ Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
⁴ Department of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
⁵ Division of Pediatric Gastroenterology, Hepatology and Nutrition, Boston Children's Hospital, Boston, Massachusetts, USA.
⁶ Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Celiac Disease Center, Stanford University, Lucile Packard Children's Hospital, Palo Alto, California, USA.
⁷ Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, George Washington University School of Medicine, Washington, District of Columbia, USA.
⁸ Division of Pediatric Gastroenterology Hepatology and Nutrition, Mayo Clinic, Rochester, Minnesota, USA.
⁹ Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, The University of Chicago, Chicago, Illinois, USA.
¹⁰ Department of Pediatrics, Harvard Medical School, Division of Pediatric Gastroenterology and Nutrition, Mass General Hospital for Children, Boston, Massachusetts, USA.
¹¹ Harvard Medical School, Center for Celiac Research and Treatment, Massachusetts General Hospital, Boston, Massachusetts, USA.
¹² Department of Pediatrics, Harvard Medical School, Harvard Celiac Research Program, Boston Children's Hospital, Boston, Massachusetts, USA.
¹³ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.
¹⁴ Seattle Children's Hospital, University of Washington School of Medicine, Seattle, Washington, USA.
¹⁵ Department of Pediatrics, Colorado Center for Celiac Disease, Digestive Health Institute, Children's Hospital Colorado, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
¹⁶ Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
¹⁷ Cincinnati Children's Hospital Medical Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati, Ohio, USA.
¹⁸ Seattle Children's Hospital, Seattle, Washington, USA.
¹⁹ Division of Gastroenterology, Hepatology, and Nutrition, Children's National Hospital, Washington, District of Columbia, USA.
²⁰ Digestive Health Institute, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, USA.
²¹ MassGeneral Hospital for Children, Boston, Massachusetts, USA.
²² Department of Clinical Pediatrics, The Ohio State College of Medicine, and Division of Gastroenterology, Hepatology, and Nutrition, Nationwide Children's Hospital, Columbus, Ohio, USA.
²³ Department of Pediatrics, Section of Gastroenterology, Hepatology and Nutrition, Chicago, Illinois, USA.

PMID: 39149789
PMCID: PMC12070468
DOI: 10.1002/jpn3.12321

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.

Keywords: epidemiology; self‐management; treatment adherence and compliance.

© 2024 The Author(s). Journal of Pediatric Gastroenterology and Nutrition published by Wiley Periodicals LLC on behalf of European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

PubMed Disclaimer

Figures

**Figure 1.**
Participant body mass index (BMI) z-score at time of celiac disease diagnosis.

**Figure 2.**
Classification of method of diagnosis for study cohort. For the 29 participants who did not meet classification criteria for diagnosis by biopsy or ESPGHAN criteria, they were classified as being diagnosed by subthreshold criteria (STC).

See this image and copyright information in PMC

References

1. Singh P, Arora A, Strand TA, et al. Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis. Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association. 2018;16(6):823–836 e822. - PubMed
1. Lebwohl B, Rubio-Tapia A. Epidemiology, Presentation, and Diagnosis of Celiac Disease. Gastroenterology. 2021;160(1):63–75. - PubMed
1. Makharia GK, Singh P, Catassi C, et al. The global burden of coeliac disease: opportunities and challenges. Nature reviews Gastroenterology & hepatology. 2022;19(5):313–327. - PubMed
1. Husby S, Koletzko S, Korponay-Szabó I, et al. European Society Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for Diagnosing Coeliac Disease 2020. Journal of pediatric gastroenterology and nutrition. 2020;70(1):141–156. - PubMed
1. Hill ID, Fasano A, Guandalini S, et al. NASPGHAN Clinical Report on the Diagnosis and Treatment of Gluten-related Disorders. Journal of pediatric gastroenterology and nutrition. 2016;63(1):156–165. - PubMed

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

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

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