Refereed journal article or data article (A1)

Gluten-free diet adherence in children with screening-detected celiac disease using a prospective birth cohort study

List of AuthorsMehta Pooja, Li Qian, Stahl Marisa, Uusitalo Ulla, Lindfors Katri, Butterworth Martha D, Kurppa Kalle, Virtanen Suvi, Koletzko Sibylle, Aronsson Carin, Hagopian William A, Rewers Marian J, Toppari Jorma, Ziegler Anette-G, Akolkar Beena, Krischer Jeffrey P, Agardh Daniel, Liu Edwin, TEDDY Study Group

PublisherPublic Library of Science

Publication year2023

JournalPLoS ONE

Journal name in sourcePloS one

Journal acronymPLoS One

Volume number18

Issue number2





Self-archived copy’s web address



Celiac disease has an increasing incidence worldwide and is treated with lifelong adherence to a gluten-free diet. We aimed to describe gluten-free diet adherence rates in children with screening-identified celiac disease, determine adherence-related factors, and compare adherence to food records in a multinational prospective birth cohort study.


Children in The Environmental Determinants of Diabetes in the Young study with celiac disease were included. Subjects had at least annual measurement of adherence (parent-report) and completed 3-day food records. Descriptive statistics, t-tests, Kruskal-Wallis tests and multivariable logistic and linear regression were employed.


Two hundred ninety (73%) and 199 (67%) of subjects were always adherent to a gluten-free diet at 2 and 5 years post celiac disease diagnosis respectively. The percentage of children with variable adherence increased from 1% at 2 years to 15% at 5 years. Children with a first-degree relative with celiac disease were more likely to be adherent to the gluten-free diet. Gluten intake on food records could not differentiate adherent from nonadherent subjects. Adherent children from the United States had more gluten intake based on food records than European children (P < .001 and P = .007 at 2 and 5 years respectively).


Approximately three-quarters of children with screening-identified celiac disease remain strictly adherent to a gluten-free diet over time. There are no identifiable features associated with adherence aside from having a first-degree relative with celiac disease. Despite good parent-reported adherence, children from the United States have more gluten intake when assessed by food records. Studies on markers of gluten-free diet adherence, sources of gluten exposure (particularly in the United States), and effects of adherence on mucosal healing are needed.

Downloadable publication

This is an electronic reprint of the original article.
This reprint may differ from the original in pagination and typographic detail. Please cite the original version.

Last updated on 2023-23-03 at 12:44