Year 2020 / Volume 112 / Number 5
Original
National survey on the experiences of people with celiac disease in Spain. The CELIAC-SPAIN project

343-354

DOI: 10.17235/reed.2020.6929/2020

Francesc Casellas Jordá, Federico Argüelles Arias, Rosa Burgos, María van der Hofstadt Rovira,

Abstract
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.
Share Button
New comment
Comments
No comments for this article
References
1. Riestra S, Fernández E, Rodrigo L, et al. Prevalence of Coeliac disease in the general population of northern Spain. Strategies of serologic screening. Scand J Gastroenterol. 2000;35:398-402.
2. Casellas F, López Vivancos J, Malagelada JR. Current epidemiology and accessibility to diet compliance in adult celiac disease. Rev Esp Enferm Dig. 2006;98:408-19.
3. García Novo MD, Garfia C, Acuña Quirós MD, et al. Prevalence of celiac disease in apparently healthy blood donors in the autonomous community of Madrid. Rev Esp Enferm Dig. 2007;99:337-42.
4. Mariné M, Farre C, Alsina M, et al. The prevalence of coeliac disease is significantly higher in children compared with adults. Aliment Pharmacol Ther. 2011;33:477-86.
5. Navalón-Ramon E, Juan-García Y, Pinzón-Rivadeneira A. Prevalence and features of coeliac disease in the Mediterranean area of Spain. Semergen. 2016;42:514-22.
6. Casellas F, Rodrigo L, Vivancos JL, et al. Factors that impact health-related quality of life in adults with celiac disease: a multicenter study. World J Gastroenterol. 2008 7;14:46-52.
7. Rodríguez Almagro J, Hernández Martínez A, Lucendo AJ, Casellas F, et al. Health-related quality of life and determinant factors in celiac disease. A population-based analysis of adult patients in Spain. Rev Esp Enferm Dig. 2016;108:181-9.
8. Casellas F, Rodrigo L, Lucendo AJ,. Benefit on health-related quality of life of adherence to gluten-free diet in adult patients with celiac disease. Rev Esp Enferm Dig. 2015;107:196-201.
9. Barrio J, Cilleruelo ML, Román E, et al. Health-related quality of life in Spanish coeliac children using the generic KIDSCREEN-52 questionnaire. Eur J Pediatr. 2018;177:1515-22.
10. Barrio J, Román E, Cilleruelo M, et al. Health-Related Quality of Life in Spanish Children With Coeliac Disease. J Pediatr Gastroenterol Nutr. 2016;62:603-8.
11. Estudio sobre la situación de las personas con enfermedad celíaca en España. Recomendaciones a 59 organismos de administraciones públicas para mejorar la vida de las personas celiacas. Defensor del Pueblo. Eduardo Dato, 31 – 28010 Madrid. www.defensordelpueblo.es
12. Rodríguez Almagro J, Rodríguez Almagro D, Solano Ruiz C, et al. The Experience of Living With a Gluten-Free Diet: An Integrative Review. Gastroenterol Nurs. 2018;41:189-200.
13. Fueyo-Díaz R, Gascón-Santos S, Asensio-Martínez Á, et al. Transcultural adaptation and validation of the Celiac Dietary Adherence Test. A simple questionnaire to measure adherence to a gluten-free diet. Rev Esp Enferm Dig. 2016;108:138-44.
Related articles

Letter

Liver disorders and celiac disease

DOI: 10.17235/reed.2023.9516/2023

Editorial

Arrival in port

DOI: 10.17235/reed.2021.8083/2021

Digestive Diseases Image

Calcified cavitating mesenteric lymph node syndrome: a rare complication of celiac disease

DOI: 10.17235/reed.2020.7494/2020

Letter

Balanced by iron. Hereditary hemochromatosis and celiac disease

DOI: 10.17235/reed.2020.7269/2020

Review

New celiac disease biomarkers

DOI: 10.17235/reed.2020.7217/2020

Editorial

Is celiac disease really associated with inflammatory bowel disease?

DOI: 10.17235/reed.2019.6779/2019

Editorial

Achievements and objectives for 2019

DOI: 10.17235/reed.2018.6114/2018

Special Article

The current situation of digestive endoscopy units in the Valencian Community

DOI: 10.17235/reed.2019.5676/2018

Editorial

On the centenary of The Spanish Journal of Gastroenterology (REED)

DOI: 10.17235/reed.2017.5427/2017

Original

Coping with celiac disease: how heavy is the burden for caregivers?

DOI: 10.17235/reed.2017.4518/2016

Letter to the Editor

Celiac disease and fibromyalgia: Is there an association?

DOI: 10.17235/reed.2015.3992/2015

Citation tools
Casellas Jordá F, Argüelles Arias F, Burgos R, van der Hofstadt Rovira M. National survey on the experiences of people with celiac disease in Spain. The CELIAC-SPAIN project. 6929/2020


Download to a citation manager

Download the citation for this article by clicking on one of the following citation managers:

Metrics
This article has received 2807 visits.
This article has been downloaded 466 times.

Statistics from Dimensions


Statistics from Plum Analytics

Publication history

Received: 02/02/2020

Accepted: 05/03/2020

Online First: 27/04/2020

Published: 08/05/2020

Article revision time: 29 days

Article Online First time: 85 days

Article editing time: 96 days


Share
This article hasn't been rated yet.
Reader rating:
Valora este artículo:




Asociación Española de Ecografía Digestiva Sociedad Española de Endoscopia Digestiva Sociedad Española de Patología Digestiva
The Spanish Journal of Gastroenterology is the official organ of the Sociedad Española de Patología Digestiva, the Sociedad Española de Endoscopia Digestiva and the Asociación Española de Ecografía Digestiva
Cookie policy Privacy Policy Legal Notice © Copyright 2023 y Creative Commons. The Spanish Journal of Gastroenterology