National survey on the experiences of people with celiac disease in Spain. The CELIAC-SPAIN project

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 lim itations 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 glu ten-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 expen sive, 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.