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.
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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


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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


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