CELIAC PEOPLE HEALTH CARE WEAKNESSES IN THE UNIFIED HEALTH SYSTEM (SUS): A USER’S PERSPECTIVE

Authors

  • Flavia de Anastacio de Paula Universidade Estadual do Oeste do Paraná Centro de Educação, Letras e Saude
  • Juliana Crucinsky Secretaria de Estado de Saude / Hospital Estadual Carlos Chagas
  • Raquel Benati Secretaria de Educação de Angra dos Reis

DOI:

https://doi.org/10.12957/demetra.2014.10499

Keywords:

Educação em Saúde, Doença Celíaca, Alimentos, Acesso aos serviços de saúde.

Abstract

Celiac disease is a multisystem autoimmune disease that can manifest at any age, in genetically predisposed individuals, whose only treatment is based on the adherence to gluten-free diet throughout lifetime. This essay aims to list points and counterpoints on the weaknesses of and in health care to the people with celiac disease in the Brazilian Unified Health System [the so-called  SUS), based on the experience reported by system users. The authors are members of the ACELBRA (Association of Celiac People in Brazil) and requests received by this entity served as the basis for this essay. The situations summarized here refer to routine requests for information, and guidance, complaints, questions, produced in-person meetings or materialized during mediation in online forums by the tools of co-help groups during the period 2007-2014, involving  about twenty thousand members from different regions of the country. Given the increase in the number of diagnosed cases of celiac disease after the approval of the clinical protocol in 2009, this text is not just a list of complaints, but a map of weaknesses and bottlenecks in a system.

DOI: http://dx.doi.org/10.12957/demetra.2014.10499

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Author Biographies

Flavia de Anastacio de Paula, Universidade Estadual do Oeste do Paraná Centro de Educação, Letras e Saude

Professora Adjunto do Centro de Educação, Letras e Saúde doa Universidade Estadual do Oeste do Paraná, doutora em Educação pela Unicamp.

Juliana Crucinsky, Secretaria de Estado de Saude / Hospital Estadual Carlos Chagas

Nutricionista especialista em Nutrição Clínica e Funcional

Raquel Benati, Secretaria de Educação de Angra dos Reis

Professora Prefeitura Municipal de Angra dos Reis, Fundadora da Acelbra-RJ, Editora do site de divulgação sobre celiaca Riosemgluten. Graduadaem de Artes, Musicoterapeuta (Consevatório Brasileiro de Música) - Pós -Graduação em Estmulação Essencial ao Desenvolvimento Infantil (UFRJ).

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Published

2014-07-17

How to Cite

1.
de Paula F de A, Crucinsky J, Benati R. CELIAC PEOPLE HEALTH CARE WEAKNESSES IN THE UNIFIED HEALTH SYSTEM (SUS): A USER’S PERSPECTIVE. DEMETRA [Internet]. 2014 Jul. 17 [cited 2025 May 13];9:311-28. Available from: https://www.e-publicacoes.uerj.br/demetra/article/view/10499

Issue

Vol. 9 (2014): THEMATIC SUPPLEMENT "ATTENTION TO SPECIAL DIETARY NEEDS IN SUS"

Section

THEMATIC ARTICLES

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