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Sequence of acquisition of self-management skills to follow a gluten-free diet by adults with celiac disease
Open accessAbstract
Background Celiac disease (CD) treatment is lifelong adherence to a gluten-free diet (GFD), requiring mastery of numerous skills to maintain health. Aims To assess the rate of self-management skill acquisition following diagnosis, and the influence of demographic factors on this rate. Methods Patients attending a celiac center were invited to complete an anonymous survey which reported demographic information and time for mastery of self-management skills relevant to CD. Results Completed surveys were returned by 137 patients (79% female). Most participants reported mastering skills that involved identifying gluten-containing versus gluten-free foods within 6 months. Explaining CD and GFD to others required 1-2 years. Identifying gluten in medications and supplements required 3-5 years. Traveling internationally with GFD adherence required more than five years to learn. Demographic factors were not associated with the rate of acquisition. Conclusions This is the first description of a timeline for relevant skill acquisition following diagnosis for CD. A sequence emerges, with most patients learning skills relevant to home, then social settings, then the workplace, and, finally, unfamiliar settings. Awareness of this progression of mastery, and particular recognition of difficult skills will allow physicians and dietitians to provide CD patients with targeted education and resources to facilitate adherence.
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In an anonymous survey on 137 adult patients, most of the participants needed approximately 6 months for mastering the skills related to identifying gluten-containing versus gluten-free foods, and longer periods for more specific and less frequently needed skills.
“In an anonymous survey on 137 adult patients, most of the participants needed approximately 6 months for mastering the skills related to identifying gluten-containing versus gluten-free foods, and longer periods for more specific and less frequently needed skills (such as medications and travelling) (124).”
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 [124]
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Cites
Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis
Singh, P., Arora, A., Strand, T. A., Leffler, D. A., Catassi, C., Green, P. H., Kelly, C. P., Ahuja, V., & Makharia, G. K. (2018) · Clinical Gastroenterology and Hepatology · doi:10.1016/j.cgh.2017.06.037 · Cited by 1,743
Self-citationLebwohl, B., Sanders, D. S., & Green, P. H. R. (2018) · The Lancet · doi:10.1016/s0140-6736(17)31796-8 · Cited by 1,065
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Luque, V., Crespo‐Escobar, P., Hård af Segerstad, E. M., Koltai, T., Norsa, L., Roman, E., Vreugdenhil, A., Fueyo‐Díaz, R., & Ribes‐Koninckx, C. (2024) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1002/jpn3.12079 · Cited by 44
Metadata
- Authors
- Clerx, E. M., Silvester, J., Leffler, D., DeGroote, M., & Fishman, L. N.
- Affiliations
- Beth Israel Deaconess Medical Center (US)
- Boston Children's Hospital (US)
- Corresponding author
- Fishman, Laurie N.
- Venue
- Digestive and Liver Disease
- Publisher
- Elsevier BV
- Published
- 2019-08
- Volume
- 51
- Issue
- 8
- Pages
- 1096-1100
- ISSN
- 1590-8658 (ISSN-L)
- PMC
- PMC6682428
- OpenAlex
- W2917880347
- Cited by
- 13
- References
- 2
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 3 · 2022: 5 · 2020: 3
- FWCI
- 1.82
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Digestive and Liver Disease (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- NIH/NIDDK
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Health Sciences › Medicine › Gastroenterology › Eosinophilic Esophagitis
- Keywords
- celiac disease, gluten-free diet, self-management skills, dietary adherence, patient education, adults
- MeSH terms
- Self-Management, Adult, Celiac Disease, Female, Humans, Male, Middle Aged, Patient Compliance, Surveys and Questionnaires, Diet, Gluten-Free
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