Digestivo, Hospital Universitari Vall d'Hebron, España.
Digestivo, Hospital Universitario Virgen Macarena.
Rev Esp Enferm Dig. 2020 May;112(5):343-354. doi: 10.17235/reed.2020.6929/2020.
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.
乳糜泻（CD）是众所周知的，但它对患者生活的影响却鲜为人知。
确定 CD 在不同方面对乳糜泻患者生活的影响，如诊断、随访和治疗。
FACE 协会成员参与了 2019 年 5 月至 7 月期间进行的一项自我管理的远程调查。确定了三种参与者概况：成年后诊断的成年人、儿童期诊断的成年人和乳糜泻儿童的父母/监护人。
共纳入来自所有自治区的 540 份调查（343 名成年乳糜泻患者、58 名儿童乳糜泻患者和 139 名父母/监护人）。在诊断过程中，突出了诊断延迟（长达 2 年）和家庭成员筛查的限制。诊断后，约 20%的成年人不进行任何控制随访。患有 CD 会产生不同的反应，但担忧和生活质量受限是非常常见的。至于无麸质饮食，90%的患者表示治疗依从性良好，这伴随着症状改善和体重增加。饮食跟踪限制了患者的日常生活。无麸质制造产品被认为昂贵，标签不清晰且不吸引人。
“CELIAC-SPAIN”项目的结果表明，在 CD 的诊断、随访以及促进无麸质产品的获取方面，仍有许多方面需要改进。
