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[乳糜泻:诊断标准及无麸质饮食的影响——患者视角]

[Celiac disease: diagnostic criteria and impact of gluten free diet--patients' perspective].

作者信息

Anca Ioana, Stănescu-Popp Alina, Arama Victoria, Duţă Denisa, Alexe Gabriela, Colcer Fl

机构信息

IOMC Alfred Rusescu Bucureşti, Clinica I Pediatrie.

出版信息

Rev Med Chir Soc Med Nat Iasi. 2008 Apr-Jun;112(2):351-5.

Abstract

UNLABELLED

Clinical, serological and histological remission in celiac disease is strictly related to long life complete exclusion of gluten from the diet. Because celiac disease is an autoimmune systemic disorder the potential complications include a wide spectrum with two severe long-term morbidities: osteoporosis and malignancy. Gluten free diet, easy to be recommended, is difficult to be followed. This study aimed at evaluating the diagnostic criteria and dietary instruction, quality of life issues, impact of the gluten free diet on the celiac patient.

MATERIAL AND METHOD

250 patients (mean age at diagnosis 18.18 years) on gluten-free diet were asked to fill out a disease specific questionnaire.

RESULTS

The response rate was 58.4% (mean age at diagnosis 11 years); 7% had no biopsy proven diagnosis (being excluded) and 28.26% had only antigliadin antibodies tested as serology method; 84.78% had typical digestive symptoms at diagnosis; 28.2% had been followed up after the diagnosis; information about the disease and diet have been provided exclusively by the gastroenterologist in 95.6% of the responders, 45.6% considering the information insufficient. The gluten free products were considered in 73.9% of cases too expensive for the family income, with low availability, lack of variety and unclear labeling; 48.8% reported impaired access to certain activities (social events, traveling) and even having difficulties to be accepted for some jobs.

CONCLUSIONS

There is evidence that an educational program is needed to improve knowledge on the atypical forms of disease, diagnostic criteria and tools. The quality of life would be improved by support groups for patients, improved availability, better prices and food labeling.

摘要

未标注

乳糜泻的临床、血清学和组织学缓解与长期严格从饮食中完全排除麸质密切相关。由于乳糜泻是一种自身免疫性全身性疾病,其潜在并发症包括一系列广泛的疾病,其中两种严重的长期发病情况为骨质疏松症和恶性肿瘤。无麸质饮食虽易于推荐,但难以遵循。本研究旨在评估诊断标准和饮食指导、生活质量问题以及无麸质饮食对乳糜泻患者的影响。

材料与方法

250名接受无麸质饮食的患者(诊断时平均年龄18.18岁)被要求填写一份特定疾病问卷。

结果

回复率为58.4%(诊断时平均年龄11岁);7%的患者无活检确诊(被排除),28.26%的患者仅将抗麦醇溶蛋白抗体检测作为血清学方法;84.78%的患者在诊断时有典型的消化症状;28.2%的患者在诊断后接受了随访;95.6%的回复者仅从胃肠病学家处获得了有关该疾病和饮食的信息,45.6%的人认为信息不足。73.9%的病例认为无麸质产品对于家庭收入来说过于昂贵,且供应不足、种类单一、标签不清晰;48.8%的人报告参与某些活动(社交活动、旅行)受限,甚至在某些工作中难以被录用。

结论

有证据表明需要开展一项教育计划,以提高对疾病非典型形式、诊断标准和工具的认识。通过为患者提供支持小组、提高产品供应、降低价格和改善食品标签,可提高生活质量。

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