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

Abstract

coeliac disease (CD) is well known, but not so its impact on the patient's life. to determine the impact of CD in the life of celiac patients on different aspects such as diagnosis, follow-up and treatment. 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. 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. 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.