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Cited by 115Celiac Disease Research and ManagementChild Nutrition and Feeding IssuesEosinophilic Esophagitis

Is it gluten-free? Relationship between self-reported gluten-free diet adherence and knowledge of gluten content of foods

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Silvester, Jocelyn A., Weiten, Dayna, Graff, Lesley A., Walker, John R., Duerksen, Donald R.·2016·Nutrition
DOI 10.1016/j.nut.2016.01.021PMC PMC5457910
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Abstract

Objective To assess the relationship between self-reported adherence to a gluten-free diet (GFD) and the ability to determine correctly the appropriateness of particular foods in a GFD. Methods Persons with celiac disease were recruited through clinics and support groups. Participants completed a questionnaire with items related to GFD information sources, gluten content of 17 common foods (food to avoid, food allowed, and food to question), GFD adherence, and demographic characteristics. Diagnosis was self-reported. Results The 82 respondents (88% female) had a median of 6 y GFD experience. Most (55%) reported strict adherence, 18% reported intentional gluten consumption and 21% acknowledged rare unintentional gluten consumption. Cookbooks, advocacy groups, and print media were the most commonly used GFD information sources (85-92%). No participant identified correctly the gluten content of all 17 foods; only 30% identified at least 14 foods correctly. The median score on the Gluten-Free Diet Knowledge Scale (GFD-KS) was 11.5 (interquartile ratio, 10-13). One in five incorrect responses put the respondent at risk of consuming gluten. GFD-KS scores did not correlate with self-reported adherence or GFD duration. Patient advocacy group members scored significantly higher on the GFD-KS than non-members (12.3 versus 10.6; P < 0.005). Conclusions Self-report measures which do not account for the possibility of unintentional gluten ingestion overestimate GFD adherence. Individuals who believe they are following a GFD are not readily able to correctly identify foods that are GF, which suggests ongoing gluten consumption may be occurring, even among patients who believe they are "strictly" adherent. The role of patient advocacy groups and education to improve outcomes through improved adherence to a GFD requires further research.

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  • Studies have shown that a large proportion of adult patients with coeliac disease, including those reporting strict adherence to the gluten-free diet, could not properly identify gluten-containing/gluten-free packaged foods.

    “Studies have shown that a large proportion of adult patients with CD, including those reporting strict adherence to the GFD, could not properly identify gluten-containing/gluten-free packaged foods (49-51)”

    From Gluten-free diet for pediatric patients with coeliac disease: A position paper from the ESPGHAN gastroenterology committee, special interest group in coeliac disease. (2024) · cites this paper as [49]

    The Results (Gluten-free food identification; page unavailable) report that no respondent correctly categorized all 17 foods, and fewer than 30% of either adherence group correctly identified the gluten-free status of at least 14. This supports substantial difficulty even among those reporting strict adherence. However, the Methods describe a questionnaire about common foods, not a test of identifying specific packaged foods; the Discussion says the study could not establish whether participants could identify gluten-free oats on product labels. (LLM, conf=0.87)

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Sorted by citations

Authors
Silvester, J. A., Weiten, D., Graff, L. A., Walker, J. R., & Duerksen, D. R.
Affiliations
  • Harvard University (US)
  • University of Manitoba (CA)
Corresponding author
Duerksen, Donald R.
ORCID
Venue
Nutrition
Publisher
Elsevier BV
Published
2016-07
Volume
32
Issue
7-8
Pages
777-783
ISSN
0899-9007 (ISSN-L)
DOI
10.1016/j.nut.2016.01.021
PMC
PMC5457910
OpenAlex
W2257423044
Cited by
115
References
0
Citations by year
2026: 8 · 2025: 10 · 2024: 12 · 2023: 16 · 2022: 10 · 2021: 15 · 2020: 10 · 2019: 14 · 2018: 10 · 2017: 9 · 2016: 1
FWCI
12.41
Type
journal article
Language
en
Open access
Licence
www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations
  • Nutrition (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institute of Diabetes and Digestive and Kidney Diseases (T32DK007760)
Topics
  • Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
  • Health Sciences › Medicine › Surgery › Eosinophilic Esophagitis
Keywords
gluten-free diet, dietary adherence, celiac disease, patient associations, food labeling, self-report validity
MeSH terms
Adult, Celiac Disease, Female, Glutens, Humans, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Patient Compliance, Diet, Gluten-Free, Self Report

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