The Gluten Free Diet: Assessing Adherence in a Pediatric Celiac Disease Population

J Can Assoc Gastroenterol. 2020 Apr;3(2):67-73. doi: 10.1093/jcag/gwy067. Epub 2018 Dec 12.

Jenna K Dowhaniuk 1, Heather Mileski 2, Joanne Saab 2, Perri Tutelman 1, Lehana Thabane 3, Herbert Brill 1


Author information

  • 1Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
  • 2McMaster Children's Hospital, Hamilton Health Sciences Ontario, Canada.
  • 3Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada.


Background: A strict, lifelong, gluten-free diet (GFD) remains the sole treatment for celiac disease (CD). The assessment of adherence to the GFD in pediatric studies is often based on self-report and visual analogue scales which lack proven validity. We sought to compare parental-report of GFD adherence to expert registered dietitian (RD) assessments, the best available standard.

Methods: Parents of children with biopsy-proven CD scored their adherence to the GFD on a five-point Likert scale similar to that used in previous pediatric CD studies. Each family was then evaluated by an RD expert in CD management who conducted a comprehensive and standardized assessment and scored the family's adherence. The agreement between parents and the RD was assessed using paired t test and intraclass correlation coefficient (ICC) based on their scores.

Results: One hundred twenty-two children and their families participated in the study, with a median of 32 months on a GFD. Excellent adherence (score 5 out of 5) was attributed to 60.5% of the sample by the RD. The parents scored adherence higher than the RD by an average difference of 0.41 scale points (95% CI, 0.28-0.54; P < 0.001). The agreement between parents and the registered dietitian was poor (ICC = 0.21).

Conclusion: Reliance on self-report through Likert scales for GFD adherence overestimates adherence and misses opportunities for patient and family education. Approximately 40% of children with CD have ongoing gluten exposure, highlighting the need for regular assessment by an RD expert in the GFD to identify education and counselling needs for children with CD.

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