The DOI matches its Crossref record; 1 of the 1 references it cites were found in a registry or an index.
National survey on the experiences of people with celiac disease in Spain. The CELIAC-SPAIN project
Open accessAbstract
INTRODUCTION: coeliac disease (CD) is well known, but not so its impact on the patient's life. OBJECTIVE: to determine the impact of CD in the life of celiac patients on different aspects such as diagnosis, follow-up and treatment. MATERIAL AND METHODS: associates of FACE participated in an auto-administered, telematic survey conducted between May and July, 2019. Three participant profiles have been defined: adults diagnosed in adulthood, adults diagnosed in childhood and parents/guardians of celiac children. RESULTS: 540 surveys (343 adult celiacs, 58 celiacs from children and 139 parents/guardians) from all autonomous communities have been included. In the diagnostic process highlights the diagnostic delay (up to 2 years) and the limitations to screening of family members. After diagnosis, about 20 % of adults do not refer to follow any control. Having a CD generates different reactions, but concern and quality of life limitation are very common. As for the gluten-free diet, 90 % of patients referred good adherence to treatment, which is accompanied by improved symptoms and weight gain. Diet tracking limits patients' daily lives. Gluten-free manufactured products are considered expensive, with unclear and unappealing labeling. CONCLUSIONS: the results of the "CELIAC-SPAIN" project show that there are still many aspects to be improved in CD, both diagnosis and follow-up and in facilitating access to gluten-free products.
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Patients perceive insufficient, confusing, unclear or unappealing labelling as a barrier for adherence to the gluten-free diet.
“Patients perceive insufficient, confusing, unclear or unappealing labelling as a barrier for adherence to the GFD (45-47).”
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 [46]
In “Exclusion of gluten from the diet” (page unavailable), respondents report difficulty determining gluten content from labels, supporting the concern about unclear labelling. The paper describes the products—not their labels—as scarcely appetizing, and does not establish that labelling difficulties reduce adherence to the gluten-free diet. (LLM, conf=0.86)
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Barrio, J., Cilleruelo, M. L., Román, E., & Fernández, C. (2018) · European Journal of Pediatrics · doi:10.1007/s00431-018-3204-0 · Cited by 20
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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
- Casellas Jordá, F., Argüelles Arias, F., Burgos, R., & van der Hofstadt Rovira, M.
- Affiliations
- Vall d'Hebron Hospital Universitari (ES)
- ORCID
- Burgos, Rosa
- Venue
- Revista Española de Enfermedades Digestivas
- Published
- 2020
- Volume
- 112
- Issue
- 5
- Pages
- 343-354
- ISSN
- 1130-0108 (ISSN-L)
- OpenAlex
- W3017332824
- Cited by
- 10
- References
- 1
- Citations by year
- 2025: 3 · 2024: 2 · 2023: 1 · 2022: 3 · 2021: 1
- FWCI
- 1.09
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- cc-by-nc-nd
- Locations
- Revista Española de Enfermedades Digestivas (publishedVersion)
- PubMed (publishedVersion)
- Deposito de Investigacion Universidad de Sevilla (University of Seville) (submittedVersion, cc-by-nc-nd)
- RISalud Institutional Health Repository of Andalucía (submittedVersion, other-oa)
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Gastroenterology › Eosinophilic Esophagitis
- Health Sciences › Medicine › Gastroenterology › Gastrointestinal motility and disorders
- Keywords
- celiac disease, patient experience, delayed diagnosis, follow-up care, gluten-free diet adherence, quality of life, gluten-free foods, food labeling, family screening, parents and guardians
- MeSH terms
- Adult, Celiac Disease, Child, Humans, Patient Compliance, Quality of Life, Spain, Diet, Gluten-Free, Delayed Diagnosis
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