Doença Celíaca: Desvelando Histórias / Celiac Disease: Unveiling Stories / Enfermedad Celíaca: Desvelando Historias

Objetivo: explorar o impacto da doença celíaca no bem-estar e no desenvolvimento de crianças, conforme percebido por suas mães, participantes do grupo "Criança Celíaca" no Facebook. Método: Estudo qualitativo, utilizando o método de história oral. A pesquisa centraliza a questão: Como a doença celíaca influencia a qualidade de vida e a saúde durante o crescimento e desenvolvimento infantil? Seis mães foram escolhidas com base em critérios de inclusão específicos e concordaram em participar do estudo. Os dados foram coletados através de entrevistas gravadas no Zoom e analisados por meio de transcrição, agrupamento e categorização dos depoimentos. Resultados:Os achados são divididos em sete categorias: experiências de crianças com doença celíaca; impacto na qualidade de vida, crescimento e desenvolvimento; interações em eventos sociais; experiências escolares; emoções diante da doença; e necessidades das famílias afetadas. Conclusão: O estudo revela a necessidade de maior envolvimento dos profissionais de enfermagem neste campo, enfatizando a importância do papel ativo dos pais na garantia da qualidade de vida de crianças celíacas

Objective: to explore the impact of celiac disease on the well-being and development of children as perceived by their mothers, members of the "CeliacChild" group on Facebook. Method:This qualitative study, employing oral history methodology. The research focuses on the question: How does celiac disease affect the quality of life and health during childhood growth and development? Six mothers were selected based on specific inclusion criteria and agreed to participate in the study. Data were collected through interviews recorded on Zoom and analyzed through transcription, grouping, and categorization of the testimonies. Results:The findings are divided into seven categories: experiences of children with celiac disease; impact on quality of life, growth, and development; interactions at social events; school experiences; emotions in the face of the disease; and the needs of affected families. Conclusion:The study highlights the need for greater involvement of nursing professionals in this field, emphasizing the importance of parents' active role in ensuring the quality of life of children with celiac disease

Objetivo: explorar el impacto de la enfermedad celíaca en el bienestar y desarrollo de los niños, según lo percibido por sus madres, integrantes del grupo "Niño Celíaco" en Facebook. Método:Este estudio cualitativo, utilizando el método de historia oral. La investigación se centra en la pregunta: ¿Cómo afecta la enfermedad celíaca a la calidad de vida y la salud durante el crecimiento y desarrollo infantil? Se seleccionaron seis madres basadas en criterios específicos de inclusión y acordaron participar en el estudio. Los datos se recopilaron a través de entrevistas grabadas en Zoom y se analizaron mediante transcripción, agrupación y categorización de los testimonios. Resultados:Los hallazgos se dividen en siete categorías: experiencias de niños con enfermedad celíaca; impacto en la calidad de vida, crecimiento y desarrollo; interacciones en eventos sociales; experiencias escolares; emociones frente a la enfermedad; y las necesidades de las familias afectadas. Conclusión:El estudio resalta la necesidad de una mayorimplicación de los profesionales de enfermería en este campo, enfatizando la importancia del rol activo de los padres en garantizar la calidad de vida de los niños celíacos.

Prevalence of IgA anti-tissue transglutaminase antibody in a cohort of iranians patients with inflammatory bowel disease

Background and Aims: Some studies have reported the coexistence of inflammatory bowel disease (IBD) and celiac disease (CD). However, the prevalence of anti-tissue transglutaminase antibodies (IgA and IgG) and their screening value in patients with IBD is not yet clear. This study aimed to assess the prevalence of IgA anti-tTG and its potential correlation with disease status in patients with IBD. Materials and Methods: This cross-sectional study was conducted on 110 patients with confirmed IBD diagnosis at Ghaem Hospital, Mashhad, Iran. For each patient, all demographic and clinical data including age, extra intestinal manifestations, underlying diseases, types of diseases, and surgical history were collected. IgA anti-tissue transglutaminase titers were assessed by enzyme-linked immunosorbent assay. Results: None of the patients with IBD were positive for IgA anti-tTG antibodies, with a mean titer of 3.31 ± 1.3 AU/mL. Also, the mean titers were not associated with age, gender and various disease clinical features including the disease history, underlying disease, diagnosis type, extraintestinal manifestations, and surgery history. Conclusion: No significant prevalence pattern of IgA anti-tTG antibody was observed in patients with IBD. Accordingly, serological screening for CeD is not recommended in IBD patients, unless in a relevant clinical CeD suspicion. (AU)

Piel y tubo digestivo: dermatitis herpetiforme y enfermedad celíaca / Small bowel and skin: celiac disease and dermatitis herpetiformis

La dermatitis herpetiforme, también denominada Enfermedad de Dühring-Brocq, es una dermatosis autoinmune crónica que evoluciona por brotes, caracterizada por la presencia de ampollas pequeñas que tienden a agruparse, en codos, rodillas y glúteos, con disposición simétrica, intensamente pruriginosas. Es considerada una manifestación cutánea de la enfermedad celíaca. Afecta a adultos jóvenes (20 a 50 años). El estudio histopatológico evidencia ampollas subepidérmicas. La inmunofluorescencia directa es característica: depósitos granulares de IgA en las puntas de las papilas dérmicas. Aún ante falta de sintomatología digestiva debe investigarse enfermedad celíaca en todos los pacientes. La dieta libre de gluten es la clave del tratamiento. En aquellos pacientes con intenso prurito o con una dermatosis muy extensa se puede utilizar dapsona vía oral, que alivia rápidamente las manifestaciones cutáneas, pero no modifica el curso de la enfermedad digestiva. Se presenta un paciente en quien a partir de las lesiones cutáneas se realizó diagnóstico de dermatitis herpetiforme primero y de enfermedad celíaca luego

Dermatitis herpetiformis, also known as Dühring-Brocq disease, is a chronic autoimmune dermatosis that evolves in outbreaks. It is characterized by the presence of small blisters that tend to cluster on the elbows, knees, and buttocks, with a symmetrical distribution and intense itching. It is considered a cutaneous manifestation of celiac disease. It affects young adults (20 to 50 years old). Histopathological examination reveals subepidermal blisters. Direct immunofluorescence is characteristic, showing granular deposits of IgA at the tips of the dermal papillae. Even in the absence of digestive symptoms, celiac disease should be investigated in all patients. A gluten-free diet is the key to treatment. In patients with intense itching or extensive dermatosis, oral dapsone can be used to quickly relieve cutaneous manifestations, but it does not alter the course of the digestive disease. We present a patient in whom the diagnosis of dermatitis herpetiformis was made initially, followed by a diagnosis of celiac disease based on the skin lesions

Diabetes mellitus tipo 1 y enfermedad celíaca en niños y adolescentes / Type 1 diabetes mellitus and celiac disease in children and adolescents

Introducción: La asociación entre enfermedad celíaca y diabetes mellitus tipo 1 se ha publicado con mayor frecuencia que la enfermedad celíaca aislada, cuya historia natural puede variar considerablemente, con evidencia de síntomas gastrointestinales en la minoría de los pacientes. Objetivo: Caracterizar a pacientes con diabetes mellitus tipo 1 y enfermedad celíaca. Método: Estudio observacional, descriptivo y transversal en 63 niños atendidos en el Hospital Pediátrico Docente Centro Habana entre los años 2016-2017 con diagnóstico de diabetes mellitus tipo 1. Las variables estudiadas se expresaron en valores absolutos y relativa, medida de tendencia central y de dispersión. Resultados: El sexo masculino representó 58,73 por ciento de los pacientes, la mayoría entre 10 y 14 años de edad. El anticuerpo antitransglutaminasa fue positivo en menos de 10 por ciento de los niños, generalmente sin síntomas, signos o hallazgos relacionados con la enfermedad celíaca. La frecuencia de ambas enfermedades en los pacientes estudiados fue de 3,17 por ciento. Conclusiones: La diabetes mellitus tipo 1 predomina en el sexo masculino a diferencia de la enfermedad celíaca que se diagnostica en pacientes femeninas. Los resultados de anticuerpos antitransglutaminasa son negativos en la mayoría de los pacientes mientras que los positivos tienen más de un año de evolución de la diabetes, se encuentran eutróficos o sobrepeso, asintomáticos y con valores ligeramente superiores de hemoglobina glucosilada(AU)

Introduction: The association between celiac disease and type 1 diabetes mellitus has been published more frequently than isolated celiac disease, whose natural history can vary considerably, with evidence of gastrointestinal symptoms in the minority of patients. Objective: To characterize patients with type 1 diabetes mellitus and celiac disease. Method: Observational, descriptive and cross-sectional study in 63 children treated at Centro Habana Pediatric Teaching Hospital between the years 2016-2017 with a diagnosis of type 1 diabetes mellitus. The variables studied were expressed in absolute and relative values, a measure of central tendency and dispersion. Results: Males accounted for 58.73 percent of the patients, most of them between 10 and 14 years old. The anti-transglutaminase antibody was positive in less than 10 percent of the children, usually without symptoms, signs, or findings related to celiac disease. The frequency of both diseases in the patients studied was 3.17 percent. Conclusions: Type 1 diabetes mellitus predominates in males unlike celiac disease which is diagnosed in female patients. The results of anti-transglutaminase antibodies are negative in most patients while the positive ones have more than a year of evolution of diabetes, are eutrophic or overweight, asymptomatic and with slightly higher values of glycosylated hemoglobin(AU)

Alergia alimentar não IgE mediada: proctocolite induzida por proteínas alimentares ­ Atualização / Non-IgE mediated food allergy: food protein-induced allergic proctocolitis ­ An update

Nas últimas décadas observa-se aumento na prevalência mundial de alergia alimentar, que já acomete aproximadamente 6% das crianças, atribuído à interação entre fatores genéticos, ambientais e alterações na resposta imunológica e pode envolver reações mediadas por IgE, não mediadas e mistas. As formas não IgE mediadas decorrem de reação de hipersensibilidade tardia, mediada por linfócitos T e afetam prioritariamente o trato gastrointestinal, como a Síndrome da enterocolite induzida por proteína alimentar (FPIES), Síndrome da proctocolite alérgica induzida por proteína alimentar (FPIAP), Síndrome da enteropatia induzida por proteína alimentar (FPE) e doença celíaca. As características destas reações podem ser diferenciadas por sua apresentação clínica, gravidade, idade de início e história natural. Entre as reações alérgicas aos alimentos não IgE mediadas, a proctocolite alérgica é a mais frequente. Geralmente ocorre no primeiro ano de vida e apresenta excelente prognóstico. Embora costume ter um curso benigno, traz grande preocupação aos cuidadores por frequentemente cursar com quadro de hematoquezia exigindo diagnóstico diferencial adequado. O conhecimento e manejo da proctocolite alérgica é de suma importância para a prática médica em Alergia e Imunologia. Seu diagnóstico é baseado na história clínica seguindo-se dieta de exclusão, especialmente do leite de vaca, com subsequente provocação oral, que geralmente pode ser realizada no domicílio. O diagnóstico preciso é importante, para se evitar dietas de exclusão desnecessárias. Nesta revisão foram utilizados artigos publicados nos últimos anos, com busca realizada através da base PubMed envolvendo revisões, diagnóstico e tratamento de alergias não IgE mediadas, com foco em proctocolite alérgica.

An increase in the worldwide prevalence of food allergies has been observed in the past decades, currently affecting 6% of children. This increase has been associated with the interaction between genetic, environmental, and immune response factors and can be observed in IgE, non-IgE, and mixed mediated reactions. Non-IgE mediated food allergies result from delayed-type hypersensitivity and mostly affect the gastrointestinal tract, such as food protein-induced enterocolitis syndrome (FPIES), food protein-induced allergic proctocolitis (FPIAP), food protein-induced enteropathy (FPE), and celiac disease. These reactions can be differentiated by their clinical presentation, severity, age at onset, and natural history. Among non-IgE-mediated allergic reactions to food, allergic proctocolitis is the most frequent. It usually develops in the first year of life and has excellent prognosis. Although it has a benign course, allergic proctocolitis is challenging for health care professionals because it often presents with hematochezia, requiring an accurate differential diagnosis. Knowledge and management of allergic proctocolitis is of paramount importance for medical practice in allergy and immunology. Its diagnosis is based on clinical history followed by elimination diet, especially cow's milk, with subsequent oral food challenge, which may usually be performed at home. Accurate diagnosis is important to avoid unnecessary elimination diets. For this review, PubMed database was searched for recently published literature reviews and studies on the diagnosis and treatment of non- IgE mediated allergies, with a focus on allergic proctocolitis.

Screening for celiac disease in patients with irritable bowel syndrome fulfilling Rome III criteria

Background: Irritable bowel syndrome (IBS) is a common functional gastrointestinal disorder. Celiac disease (CD), a treatable autoimmune enteropathy, with varied presentations, may simulate clinically symptoms of IBS. The aim of the present study is to screen for CD in patients with IBS diagnosed based on the Rome III criteria. Patients and Methods: A cross-sectional study was conducted at a secondary care gastrointestinal unit in Al-Salam General Hospital in Mosul city, Iraq, from November 2015 to October 2016. All patients fulfilling the Rome III criteria for IBS were screened for CD using antitissue transglutaminase IgA antibodies (anti-tTG). Patients who tested positive were subjected to endoscopic duodenal biopsy to confirm the diagnosis of CD. Results: A total of 100 patients were included in the present study (58 female and 42 male), the mean age of the participants was 40.8 years old (standard deviation [SD]±11.57). Ten patients (10/100, 10%) tested positive for anti-tTG antibodies. Five of the seropositive patients (5/10, 50%) showed positive biopsy results according to the Marsh classification, 3 of whom having diarrhea, and 2 with constipation. Conclusion: Positive serology and biopsy results suggestive of CDare common among patients with IBS. Screening patients with IBS for CD is justified. (AU)

Enfermedad celíaca: un reto diagnóstico en Colombia / Celiac disease: a diagnostic challenge in Colombia

Introducción: la enfermedad celíaca (EC) es una patología sistémica inmunomediada por el gluten en la dieta en personas genéticamente susceptibles con un amplio rango de manifestaciones clínicas, respuesta serológica específica y un daño variable de la mucosa intestinal. Objetivo: revisar la fisiopatología, manifestaciones clínicas, diagnóstico, tratamiento, seguimiento y pronóstico de la EC, resaltando la importancia de reconocerla y proponer un algoritmo diagnóstico para la población colombiana. Materiales y métodos: revisión crítica de la literatura científica en las bases de datos Medline y buscadores específicos PUBMED, SCIENCE DIRECT, SCIELO, filtrando resultados a revisiones sistemáticas, metaanálisis, ensayos controlados aleatorios y guías de práctica clínica, con un total de 1209 artículos, de los cuales se priorizaron 53. Resultados y discusión: la prevalencia de la EC viene en aumento en países en vía de desarrollo. El diagnóstico tiene tres pilares fundamentales: la identificación de casos de alto riesgo o sospecha por manifestaciones clínicas, un perfil serológico de anticuerpos específicos y hallazgos histológicos característicos. El tratamiento se basa en una dieta sin gluten, en la detección temprana de complicaciones y el manejo de las alteraciones nutricionales. Conclusión: en Colombia no existen protocolos de diagnóstico y tratamiento de la EC, como tampoco una legislación clara con respecto al etiquetado de productos libres de gluten. Hay que establecer estrategias para impactar el curso natural de la enfermedad, las morbilidades asociadas y la calidad de vida de los pacientes.

Introduction: celiac disease (CD) is a systemic diet-gluten-immune-mediated enteropathy occurring in genetically susceptible individuals featuring a broad range of clinical manifestations, a specific serological response and variable intestinal mucosal damage. Objective: to review CD pathophysiology, clinical manifestations, diagnosis, treatment, follow-up and prognosis, highlighting the importance of awareness about this disorder and development of a diagnostic algorithm for Colombian population. Materials and methods: scientific literature critical review in the Medline databases and PUBMED, SCIENCE DIRECT, SCIELO specific search engines, using filters to retrieve systematic reviews, metanalyses, randomized controlled trials and clinical practice guidelines, finding 1209 articles, prioritizing 53. Results and discussion: the prevalence of CD is increasing in developing countries. Diagnosis is based on 3 fundamental pillars: identification of higher-risk populations or suspicion based on clinical manifestations, serological profile of specific antibodies and characteristic histological findings. Treatment is based on a gluten-free diet, early detection of complications and nutritional alterations management. Conclusion: there are no CD diagnosis and treatment protocols, nor clear regulations on labelling gluten-free products, in Colombia. Establishing strategies to impact the natural course of CD, associated morbidities and quality of life, is required

Dermatitis herpetiforme como manifestación extraintestinal gluten inducida en la enfermedad celíaca: estudio retrospectivo de pacientes que se asisten en el Hospital de Clínicas Dr. Manuel Quintela / Dermatitis herpetiformis as a gluten induced extraintestinal manifestation in coeliac disease: retrospective study of patients assisted at "Dr. Manuel Quintela" University Hospital / Dermatite herpetiforme como manifestação extraintestinal induzida por glúten na doença celíaca: estudo retrospectivo de pacientes atendidos no Hospital de Clínicas "Dr. Manuel Quintela"

Resumen: Introducción: la dermatitis herpetiforme (DH) es una enfermedad cutánea inflamatoria que cursa en empujes y remisiones. Es una manifestación extraintestinal de la enfermedad celíaca (EC), de la que puede ser la primera manifestación clínica(1). La enfermedad celíaca es una enfermedad sistémica autoinmune, asociada con enteropatía, desencadenada por la ingesta de gluten en individuos genéticamente predispuestos(2-4). Se ha demostrado una asociación con el HLA DQ2 y HLA DQ8 en ambas enfermedades(5). Objetivo: mostrar las características de los pacientes con DH y EC que se asisten en las policlínicas de dermatología y gastroenterología del Hospital Universitario Dr. Manuel Quintela. Metodología: se realizó un estudio descriptivo, observacional, retrospectivo y longitudinal de una serie de casos. Criterios de inclusión: pacientes asistidos en servicios de dermatología y gastroenterología del Hospital de Clínicas, con diagnóstico de DH confirmado con histopatología y/o inmunofluorescencia directa; desde julio de 2000 a junio de 2018 inclusive. Quedaron excluidos aquellos pacientes en los que no se pudo acceder al estudio histopatológico de piel. Resultados: incluimos un total de 15 pacientes, 9 de sexo masculino y 6 de sexo femenino. La edad media al diagnóstico de DH fue de 49 años. 4 pacientes recibieron tratamiento con dapsona, con rápida respuesta de la dermatosis, sin efectos adversos graves. En 13 pacientes la DH fue el síntoma guía para el diagnóstico de EC. 5 pacientes con EC asintomática, 6 con síntomas clásicos, 4 con síntomas no clásicos.

Summary: Introduction: dermatitis herpetiformis (DH) is an inflammatory cutaneous disease comprising relapses and remissions. It is an extraintestinal manifestation of coeliac disease, which can even be its first clinical manifestation. Coeliac disease (CD) is an autoimmune systemic disease, associated with enteropathy, that is induced by the intake of gluten in genetically predisposed individuals. In both diseases an association between HLA DQ2 and HLA DQ8 has been proved. Objective: to present the characteristics of patients with Dermatitis herpetiformis (DH) and Coeliac disease (CD) who are assisted in the dermatology and gastroenterology polyclinics at the "Dr. Manuel Quintela" University Hospital. Methodology: descriptive, observational, retrospective and longitudinal study of a series of cases. Inclusion criteria: patients assisted at the dermatology and gastroenterology services of the University Hospital, with a diagnosis of Dermatitis herpetiformis (DH) confirmed by histopathology and/or direct immunofluorescence (DIF), from July, 200 to June 2018 inclusive. Patients whose skin histopathological exam could not be accessed were excluded from the study. Results: 15 patients were included, 9 male and 6 female. Average age upon diagnosis of DH is 49 years old. 4 patients were treated with dapsona, evidencing a fast response to dermatosis, and no severe adverse effects. In 13 patients, DH was the guiding symptom to diagnose coeliac disease. However, 5 patients had asymptomatic CD, 6 presented classical symptoms and 4 non-classical symptoms.

Resumo: Introdução: a dermatite herpetiforme (DH) é uma doença inflamatória da pele que ocorre em impulsos e remissões. É uma manifestação extra-intestinal da doença celíaca (DC), da qual pode ser a primeira manifestação clínica. A doença celíaca é uma doença autoimune sistêmica associada à enteropatia, desencadeada pela ingestão de glúten em indivíduos geneticamente predispostos. Uma associação com HLA DQ2 e HLA DQ8 foi demonstrado em ambas as doenças. Objetivo: mostrar as características dos pacientes com HD e DC atendidos nas policlínicas dermatológicas e gastroenterológicas do "Dr. Manuel Quintela". Metodologia: foi realizado um estudo descritivo, observacional, retrospectivo e longitudinal de uma série de casos. Critérios de inclusão: pacientes atendidos nos serviços de dermatologia e gastroenterologia do Hospital de Clínicas, com diagnóstico de HD confirmado pela histopatologia e / ou imunofluorescência direta; de julho de 2000 a junho de 2018 inclusive. Foram excluídos os pacientes em que não foi possível acessar o estudo histopatológico da pele. Resultados: incluímos um N total de 15 pacientes, 9 homens e 6 mulheres. A idade média no diagnóstico de DH é de 49 anos. 4 pacientes receberam tratamento com dapsona, com resposta rápida da dermatose, sem efeitos adversos graves. Em 13 pacientes, a DH foi o sintoma norteador para o diagnóstico de DC. 5 pacientes com DC assintomática, 6 com sintomas clássicos, 4 com sintomas não clássicos.

Adherencia a la dieta sin gluten y calidad de vida en relación con la salud en los celiacos del Paraguay, 2021 / Adherence to a Gluten-Free Diet and Health-Related Quality of Life in Celiac Patients from Paraguay, 2021

Resumen Antecedentes: la calidad de vida en relación con la salud de las personas con enfermedad celiaca puede estar influenciada por la adherencia a la dieta sin gluten. Objetivos: describir las características demográficas y clínicas de los celiacos, evaluar la adherencia dietética con el cuestionario CDAT de Leffler y medir la calidad de vida autopercibida utilizando el cuestionario CD-QOL. Métodos y materiales: diseño observacional, transversal y prospectivo. Se aplicó una encuesta telemática a adolescentes y adultos de Paraguay diagnosticados con enfermedad celiaca, entre febrero y abril del año 2021, que accedieron a participar del estudio. La adherencia dietética se determinó con el cuestionario Celiac Dietary Adherence Test de Leffler y la calidad de vida con el CD-QOL de Dorn. Se midieron además variables demográficas y clínicas. La investigación fue aprobada por el Comité de Ética de la Universidad Privada del Este, en Paraguay. Resultados: la muestra estuvo constituida por 344 sujetos de estudio, de los cuales el 87 % pertenecía al sexo femenino. La edad media de los adolescentes fue de 15,1 años, y la de los adultos de 38±13 años. La adherencia a la dieta sin gluten se encontró en el 78 % (n=268) de los encuestados; fue buena en el 59 %, moderada en el 19 % y mala en el 22 % de los encuestados. La calidad de vida fue buena en el 30 % (n=103) de los sujetos y mala en el 70 % (n=241). Se encontró asociación entre los sujetos sin o mala adherencia a la dieta con la mala calidad de vida (p<0,006). Conclusión: en los celiacos estudiados, la mala adherencia a la dieta sin gluten se asocia con menor calidad de vida en relación con la salud.

Abstract Background: The health-related quality of life of people with celiac disease may be influenced by adherence to a gluten-free diet. Objectives: To describe the demographic and clinical characteristics of celiac patients, to evaluate dietary adherence with the Leffler CDAT questionnaire, and to measure self-perceived quality of life using the CD-QOL questionnaire. Material and Methods: Observational, cross-sectional, and prospective design. A telematic survey was applied to adolescents and adults in Paraguay, diagnosed with celiac disease, between February and April 2021, who agreed to participate in the study. Dietary adherence was determined with the Celiac Dietary Adherence Test of Leffler and quality of life with the test CD-QOL of Dorn. Demographic and clinical variables were also measured. The research was approved by the Ethics Committee of the Universidad Privada del Este, in Paraguay. Results: The sample consisted of 344 study subjects of which 87% belonged to the female sex. The mean age of the adolescents was 15 ±1 years, and that of the adults was 38 ±13 years. Adherence to a gluten-free diet was found in 78% (n=268) of those surveyed, it was good in 59%, moderate in 19%, and bad in 22%. The quality of life was good in 30% (n=103) of the subjects and bad in 70% (n 241). It was found an association between subjects with no or bad adherence to the diet with bad quality of life (p<0.006). Conclusion: In the celiac patients studied, poor adherence to the gluten-free diet is associated with worse health-related quality of life.

Dermatitis herpetiforme y enfermedad celíaca: del intestino a la piel / Dermatitis herpetiformis and celiac disease

Dermatitis herpetiformis is an autoimmune chronic blistering disease, considered a skin manifestation of celiac disease. Being both conditions multifactorial, they share some genetic traits and pathogenic mechanisms, which are responsible for the typical skin and gastrointestinal manifestations. In dermatitis herpetiformis, skin and other lesions heal after gluten-free diet and reappear shortly after its reintroduction to complete diet. Prevalence of celiac disease is 1% in the population, and approximately 13% of patients with the disease develop dermatitis herpetiformis. Diagnosis of celiac disease has progressively increased in recent decades, while clinical manifestations become more and more diverse. Given the current high frequency of skin lesions in celiac patients, in this review we update relevant aspects of the epidemiology, pathogenesis, clinical presentations, treatment and follow up of dermatitis herpetiformis, as a contribution to improve the management of both conditions.

Características clínicas, demográficas y acceso a los productos sin gluten de pacientes con enfermedad celíaca registrados en la FUPACEL / Clinical and demographic characteristics, and access to gluten free products of patients with celiac disease registered in the FUPACEL

La enfermedad celíaca (EC) es una enfermedad inflamatoria autoinmune que afecta la mucosa del intestino delgado que lleva a un estado de mal absorción en pacientes genéticamente susceptibles desencadenada por la ingesta de gluten. Tiene síntomas inespecíficos, complicaciones asociadas y no existe a nivel nacional una ley de apoyo económico para las personas con dificultad para seguir una dieta libre de gluten. El objetivo de este estudio observacional, descriptivo, de corte transversal fue describir las características clínicas, demográficas y acceso a productos sin gluten de 237 pacientes con enfermedad celíaca registrados en la Fundación Paraguaya de Celiacos (FUPACEL) en el 2020 y que aceptaron responder una encuesta en línea publicada en la página oficial de la FUPACEL. El 70,4% de los participantes era del sexo femenino, la edad de diagnóstico fue en el 34,5% entre 20-30 años, 48 % tenía algún familiar con EC, el 69,1% presentó distensión abdominal como sintomatología inicial, 16,8% presentó hipotiroidismo como patología asociada, y 42% fue hospitalizado al menos una vez. El 82,7% de los encuestados respondió que la dieta era suficiente como tratamiento, 48% tenía un trabajo y podía solventar los gastos, sin embargo, el 79,3% opinó tener acceso limitado a los productos sin gluten, el 92% que los alimentos sin gluten eran costosos y que se necesitaba una ley de apoyo económico para solventar los gastos. La mayoría reconoció que la dieta sin gluten como tratamiento era suficiente, sin embargo, por su alto costo se necesita una ley de apoyo económico para las personas con enfermedad celiaca

Celiac disease (CD) is an autoimmune inflammatory disease that affects the mucosa of the small intestine that leads to a state of malabsorption in genetically susceptible patients triggered by the ingestion of gluten. It has nonspecific symptoms, associated complications, and there is no national financial support law for people with difficulty following a gluten-free diet. The objective of this observational, descriptive, cross-sectional study was to describe the clinical, demographic characteristics and access to gluten-free products of 237 patients with celiac disease registered in the FUPACEL in 2020 who accepted to answer a online survey published in the official FUPACEL webpage. Seventy-point four percent of the patients were female, their age of diagnosis was between 20-30 years in 34.5%, 48% had relatives with CD, 69.1% presented abdominal distension as initial symptoms, hypothyroidism was present in 16.8% as associated pathology, and 42% were hospitalized at least once. Eighty-two-point seven percent of those surveyed answered that diet was sufficient as a treatment, 48% had a job and could afford expenses, however, 79.3% said they had limited access to gluten-free products, 92% that gluten-free foods were expensive and a financial support law was needed to cover the costs. Most recognized that a gluten-free diet as a treatment was sufficient, however, due to its high cost, a law of financial support is needed for people with celiac disease

Doença celíaca soronegativa em pacientes brasileiros: uma série de casos / Seronegative celiac disease in brazilian patients: a series of cases

ABSTRACT BACKGROUND: Celiac disease (CD) is an autoimmune disease characterized by immune reaction mostly to wheat gluten. The diagnosis is based on clinical, serological and histological findings in patients ingesting gluten. Cases that the clinical profile indicates CD and the autoantibodies are negative bring so a dilemma for the professional, as the risk of missed the diagnosis or a delay at the same. OBJECTIVE: To show the importance of correct diagnosis of cases with seronegative celiac disease (SNCD). METHODS: Ten cases of SNCD Brazilian patients were retrospectively studied (2013 to 2019). Data of clinical complaints, autoantibodies, IgA serum levels, histological findings and HLA-DQ2/DQ-8 were compiled. Dual-X densitometry, delay at diagnosis, previous autoimmune diseases and family history of CD were also checked. RESULTS: All SNCD patients presented clinical symptoms of CD, with confirmed diagnosis by histological findings of the duodenal mucosa and HLA-DQ2 and/or HLA-DQ8 positivity. All patients had normal IgA levels and negative autoantibodies (IgA-anti-transglutaminase and anti-endomysial). Dual-X densitometry detected osteopenia in two women and osteoporosis in two males, all with low levels of vitamin D. Delay diagnostic ranged from 1 to 19 years. Familiar occurrence of CD was reported in 40% of the cases. After one year of gluten-free diet, eight patients refer improve of symptoms, while duodenal biopsies, done in five cases, showed histological improvement. CONCLUSION: Patients who demonstrate the clinical profile of celiac disease with negative serology and normal levels of IgA, especially those who have family members with celiac disease, should be submitted to duodenal biopsies to look for histological findings.

RESUMO CONTEXTO: A doença celíaca (DC) é uma doença autoimune caracterizada por reação imune principalmente ao glúten do trigo. O diagnóstico é baseado em achados clínicos, sorológicos e histológicos em pacientes que ingerem glúten. Casos em que o perfil clínico indica DC e os autoanticorpos são negativos trazem um dilema para o profissional, como o risco de não realizar ou atrasar o diagnóstico da DC. OBJETIVO: Mostrar a importância do diagnóstico correto de casos com doença celíaca soronegativa (DCSN). MÉTODOS: Dez casos de pacientes brasileiros com DCSN foram estudados retrospectivamente (2013 a 2019). Foram compilados dados de queixas clínicas, autoanticorpos, níveis séricos de IgA, achados histológicos e HLA-DQ2 / DQ-8. Densitometria, atraso no diagnóstico, doenças autoimunes prévias e histórico familiar de DC também foram verificados. RESULTADOS: Todos os pacientes com DCSN apresentaram sintomas clínicos de DC, com diagnóstico confirmado por achados histológicos da mucosa duodenal e positividade para HLA-DQ2 e/ou HLA-DQ8. Todos os pacientes apresentavam níveis normais de IgA e autoanticorpos negativos (IgA-anti-transglutaminase e anti-endomisial). A densitometria detectou osteopenia em duas mulheres e osteoporose em dois homens, todos com baixos níveis de vitamina D. O atraso no diagnóstico variou de 1 a 19 anos. A ocorrência familiar de DC foi relatada em 40% dos casos. Após 1 ano de dieta isenta em glúten, oito pacientes referem melhora dos sintomas, enquanto as biópsias duodenais, realizadas em cinco casos, mostraram melhora histológica. CONCLUSÃO: Pacientes que apresentam quadro clínico de doença celíaca com sorologia negativa e níveis normais de IgA, principalmente aqueles que possuem familiares com doença celíaca, devem ser submetidos à biópsia duodenal para pesquisa de achados histológicos.

Uma melhor adesão às diretrizes da ESPGHAN é necessária para o diagnóstico da doença celíaca em crianças: uma experiência de um único centro / Improved adherence to the espghan guidelines is necessary for diagnosing celiac disease in children: a single-center experience

ABSTRACT BACKGROUND: Celiac disease (CD) is an immune-mediated systemic disorder elicited by the ingestion of gluten. The European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines published in 2012 suggested a no-biopsy pathway (NBP) for symptomatic children with IgA tissue transglutaminase (TGA-IgA) ≥10x upper limit of normal (ULN). Biopsy confirmation remained mandatory for other cases. OBJECTIVE: This retrospective case note study was aimed at evaluating the adherence to the ESPGHAN 2012 guidelines for diagnosing CD in our unit. METHODS: Forty-three cases with positive TGA-IgA were identified by a laboratory database search from January 2013 to December 2019. 6 of 43 patients were not referred for a confirmation of CD diagnosis. Data was collected on the diagnostic pathways followed, and appropriateness of adherence was compared with the existing ESPGHAN guidelines. RESULTS: A total of 37 cases were included with 35 children diagnosed with CD. 29/35 (83%) were diagnosed via the NBP;15/29 (52%) children did not meet all the criteria required for NBP, but were diagnosed and managed as having CD. 20/35 (57%) children were diagnosed with CD in adherence to the 2012 guidelines. CONCLUSION: The recommended diagnostic guidelines were frequently not implemented; adherence to the guidelines may improve following regular educational sessions. The revised 2020 ESPGHAN guidelines which exclude HLA-DQ2/DQ8 testing would address the issue of diagnosis for the 10/15 NBP cases (with TGA-IgA >10xULN) in our study who did not have HLA testing and were therefore non-adherent to the 2012 diagnostic guidelines. NBP, with the reduced need for endoscopy may be beneficial in resource limited settings.

RESUMO CONTEXTO: A doença celíaca (DC) é uma doença sistêmica imuno-mediada provocada pela ingestão de glúten. As diretrizes da Sociedade Europeia de Gastroenterologia Pediátrica, Hepatologia e Nutrição (ESPGHAN) publicadas em 2012 sugeriram uma via sem biópsia (VSB) para crianças sintomáticas com transglutaminase de tecido IgA (TGA-IgA) ≥10x limite superior do normal (LSN). A confirmação da biópsia permaneceu obrigatória para outros casos. OBJETIVO: Este estudo retrospectivo de dados de caso teve como objetivo avaliar a adesão às diretrizes da ESPGHAN 2012 para o diagnóstico de DC em nossa unidade. MÉTODOS: Quarenta e três casos com TGA-IgA positivo foram identificados por uma pesquisa laboratorial de banco de dados de janeiro de 2013 a dezembro de 2019. Seis de 43 pacientes não foram encaminhados para confirmação do diagnóstico de DC. Os dados foram coletados nas vias diagnósticas seguidas, e a adequação da adesão foi comparada com as diretrizes ESPGHAN existentes. RESULTADOS: Foram incluídos 37 casos com 35 crianças diagnosticadas com DC. Foram diagnosticados 29 (83%) de 35 VSB; 15 (52%) de 29 crianças não atenderam a todos os critérios exigidos para a VSB, mas foram diagnosticadas e gerenciadas como tendo DC. Vinte (57%) em 35 foram diagnosticadas com DC em adesão às diretrizes de 2012. CONCLUSÃO: As diretrizes diagnósticas recomendadas não foram frequentemente implementadas; a adesão às diretrizes pode melhorar após sessões educativas regulares. As diretrizes revisadas ESPGHAN de 2020 que excluem os testes HLA-DQ2/DQ8 abordariam a questão do diagnóstico para 10 em 15 casos VSB (com TGA-IgA >10x LSN) em nosso estudo os quais não fizeram testes de HLA e, portanto, não aderiram às diretrizes de diagnóstico de 2012. A VSB, com a necessidade reduzida de endoscopia, pode ser benéfica em configurações limitadas de recursos.

Evaluation of anti-COVID-19 measures taken by the parents of children with celiac disease: a cross-sectional study

ABSTRACT BACKGROUND: Coronavirus disease 2019 (COVID-19) causes negative life changes brought about through lockdowns, in addition to severe complications and death. Among these changes, asplenism or hyposplenism has been reported in patients with celiac disease. It has been reported that the risk of pneumococcal sepsis is higher in celiac patients with hyposplenism. Moreover, celiac patients present high risk of admission to hospital due to influenza. OBJECTIVE: To determine the degree of awareness of COVID-19 among parents of children with celiac disease and examine the measures that they take. DESIGN AND SETTING: Cross-sectional study at a university hospital in the Middle Anatolian region of Turkey. METHODS: The diagnosis of celiac disease was confirmed through a survey conducted online among 73 parents between May and July 2020. RESULTS: The mean age was 37.57 ± 6.56 years for the mothers, 41.15 ± 5.56 years for the fathers and 11.36 ± 4.36 years for the children. 90.4% of the parents reported that COVID-19 was transmitted through "speaking, coughing, sneezing and infection of the face after contact with virus-infected surfaces". Moreover, 78.1% indicated that they did not have any difficulty in finding gluten-free foods. CONCLUSION: These parents of children with celiac disease believed that their children's risk of developing COVID-19 did not differ from that of healthy children. It was also observed that appetite and states of nervousness were higher among these children with celiac disease during lockdowns and that their sleep patterns were affected.

Enfermedad celíaca y lesiones preneoplásicas del tubo digestivo alto / Celiac disease and preneoplastic lesions of the upper digestive tract

Objetivos: los trastornos motores, hormonales, neuroendocrinos y el estado de inmunodepresión que presenta el paciente celíaco conlleva al desarrollo de alteraciones digestivas, por lo que el presente estudio pretende determinar si la celiaquía se asocia al desarrollo de lesiones preneoplásicas del tubo digestivo superior y comparar dichos resultados con un grupo control (no celíaco). Métodos: se realizó un estudio observacional, analítico de casos y controles, en el Instituto Gastroenterológico Boliviano Japonés, Cochabamba, Bolivia. De forma aleatoria simple se obtuvo una muestra de 297 pacientes, para el grupo caso y control. Se utilizó el programa IMB SPSS v- 20, el análisis estadístico con la prueba de Chi cuadrado (con un valor de p=<0,05; 95% IC) y el análisis epidemiológico con el cálculo el Odds ratio (OR). Resultados: se observó una asociación estadística y epidemiológica significativa para el grupo celíaco con lesiones preneoplásicas en el tubo digestivo alto (p= 0,0001) OR 7,23 (IC 95% 5,387 -9,722) en comparación al grupo control que presenta una asociación estadística (p=0,03); pero con una significancia epidemiológica negativa OR 0,708 (IC 95% 0,639-0,783). Conclusiones: existe mayor prevalencia de pacientes celíacos con lesiones preneoplásicas (metaplasia intestinal esofágica y gástrica, atrofia gástrica, displasias), frente al grupo no celíaco. Esto demuestra la importancia del diagnóstico y pesquisa temprana de esta entidad, evitando el desarrollo de lesiones que podrían considerarse irreversibles en el sistema digestivo.

Objectives: the digestive, hormonal and neuroendocrine disorders and the state of immunosuppression that the celiac patient presents, leads to the development of digestive alterations, the present study aims to determine whether celiac disease is associated with the development of preneoplastic lesions of the upper gastrointestinal tract and compares the results with a control group (non-celiac). Methods: during the period January 2016 to January 2018 at Instituto de Gastroenterología Boliviano Japones - Cochabamba, Bolivia an observational study was conducted, subtype analytical case-control, where 297 samples were obtaining of patients in a simple random way, both for the case and control group. The IMB SPSS v-20 program was used, the statistical analysis was performed using the Chi square test (with p value = <0,05; 95% IC) and the epidemiological analysis with the calculation of the Odds ratio (OR). Results: a statistically and epidemiological significant association was observed for the celiac group with preneoplastic lesions in the upper gastrointestinal tract (p = 0,001) OR 7,23(IC 95% 5,387 -9,722) compared to the control group that presents a statistical association (p = 0,03); but with a negative epidemiological significance OR 0,708 (IC 95% 0,639 -0,783). Conclusions: there is a higher prevalence of celiac patients with preneoplastic lesions (esophageal and gastric intestinal metaplasia, gastric atrophy, dysplasia), compared to the non-celiac group. This demonstrates the importance of early diagnosis and investigation of this entity, avoiding the development of lesions that could be considered irreversible in the digestive system.

Manifestaciones bucales de la enfermedad celíaca y alergia al trigo: Reporte de tres casos y revisión literatura / Oral Manifestations of Celiac Disease and Wheat Allergy: Report of Three Cases and Review of Literature

Resumen: La Enfermedad Celíaca (EC) es una enfermedad sistémica inmunomediada, provocada por el gluten y prolaminas relacionadas, en individuos genéticamente susceptibles. Se caracteriza por manifestaciones clínicas dependientes del gluten, anticuerpos específicos de EC, haplotipos HLA DQ2 o DQ8 y enteropatía. La mayoría de los pacientes son asintomáticos o con manifestaciones leves. Afecta principalmente el sistema gastrointestinal causando síntomas y signos como diarrea, dolor abdominal recurrente y distensión abdominal; además manifestaciones extradigestivas. Los pacientes con EC pueden tener manifestaciones bucales que incluyen estomatitis aftosa recurrente (EAR), hipoplasia del esmalte, glositis atrófica, entre otras. El diagnóstico de EC se basa en la historia clínica, serología, endoscopía e histología. Existen otras entidades que deben diferenciarse de la EC, como la sensibilidad al gluten no celíaca y la alergia al trigo. El objetivo de este trabajo es presentar tres pacientes con antecedentes de EAR y otras manifestaciones clínicas asociadas al diagnóstico precoz de EC y alergia alimentaria.

Abastract: Celiac Disease (CD) is an immune-mediated systemic disease, caused by gluten and related prolamins, in genetically susceptible individuals. It is characterized by gluten-dependent clinical manifestations, CD-specific antibodies, HLA DQ2 or DQ8 haplotypes, and enteropathy. Most patients are asymptomatic or with mild manifestations. It mainly affects the gastrointestinal system causing symptoms and signs such as diarrhea, recurrent abdominal pain and abdominal distension; also extradigestive manifestations. Patients with CD may have oral manifestations that include recurrent aphthous stomatitis (RAS), enamel hypoplasia, atrophic glossitis, among others. The diagnosis of CD is based on clinical history, serology, endoscopy and histology. There are other entities that should be differentiated from CD, such as non-celiac gluten sensitivity and wheat allergy. The aim of this study is to present three patients with a history of RAS and other clinical manifestations associated with the early diagnosis of CD and food allergy.

Factores que limitan la adherencia a la dieta y la calidad de vida en enfermos celiacos chilenos durante COVID-19 / Factors that limit adherence to diet and quality of life in Chilean celiac patients during COVID-19

La enfermedad por coronavirus (COVID-19) es altamente contagiosa y las medidas de confinamiento dinámico han demostrado que reducen significativamente el número de contagios, sin embargo, pueden alterar la disponibilidad de alimentos afectando la adherencia a la dieta libre de gluten (DLG) y la calidad de vida (CV) en la enfermedad celiaca (EC). El objetivo de este estudio fue evaluar los factores que limitan, la adherencia a la dieta libre de gluten y la calidad de vida en personas con enfermedad celiaca en periodo de pandemia por COVID-19. Métodos Se aplicaron encuestas on-line respecto a adherencia a la DLG, CV y acerca de los factores que han generado dificultad para llevar una DLG en este escenario. Resultados Se analizaron 216 encuestas de enfermos celiacos, mayores de 15 años, de los cuales un 91% eran mujeres con un promedio de edad de 36 + 10,7 años y con 5,8 + 6,0 años de enfermedad. El 56,48% tenía una excelente adherencia a la DLG y un 43,52% una buena CV. El costo elevado de los alimentos sin gluten fue la pregunta con mayor porcentaje de respuesta, asociándose con regular y mala adherencia a la DLG (valor p=0,001) y con pobre CV (valor p=0,023). Conclusión En periodo de pandemia por COVID-19, el costo de los alimentos se asocia con adherencia regular y mala a la DLG y con pobre CV(AU)

Coronavirus disease (COVID-19) is highly contagious and dynamic confinement measures have shown to significantly reduce the number of infections, however, they can alter the availability of food, affecting adherence to a gluten-free diet (GFD) and quality of life (QoL) in celiac disease (CD). The objective of this study was to evaluate the limiting factors, adherence to a gluten-free diet and quality of life in people with celiac disease in a COVID-19 pandemic period. Methods. On-line surveys were applied regarding adherence to the GFD, CV, and factors that have generated difficulty in carrying out a GFD in this setting. Results. 216 surveys of celiac patients over 15 years of age were analyzed, of which 91% were women with an average age of 36 + 10.7 years and with 5.8 + 6.0 years of the disease. 56.48% had excellent adherence to the GFD and 43.52% had a good QoL. The high cost of gluten-free foods was the question with the highest response percentage, associated with regular and poor adherence to the GFD (p-value = 0.001) and with poor QoL (p-value = 0.023). Conclusion. In a COVID-19 pandemic period, the cost of food is associated with regular and poor adherence to the GFD and with poor QoL(AU)

Refractory celiac disease type 2: how to diagnose and treat?

SUMMARY Refractory celiac disease is an uncommon condition which might be associated to poor prognosis. It is often treated with immunosuppressive medications, with poor results. It is divided in type 1 and type 2, the latter carrying a high risk for lymphoma and mortality. A case of a 41 year old female patient with refractory celiac disease type 2 is reported. She was treated with oral budesonide for six months, achieving histological remission.

Fragilidades no cuidado em saúde às pessoas com desordens relacionadas ao glúten / Weaknesses in healthcare for persons with gluten-related disorders / Fragilidades en el cuidado de salud de personas con desórdenes relacionados al gluten

As desordens relacionadas ao glúten (DRG) afetam de 1% a 6% da população, com complicações e alto risco de morbimortalidade em curto e longo prazos. Desde 2009, o Brasil possui um Protocolo Clínico de Diretrizes Terapêuticas para a Doença Celíaca, entretanto, são comuns as queixas das pessoas com DRG a respeito da falta de conhecimento dos profissionais de saúde nessa temática e das dificuldades relacionadas ao cuidado em saúde em relação tanto ao diagnóstico quanto ao tratamento. Este estudo objetivou compreender as fragilidades no cuidado em saúde percebidas por pessoas com DRG. Foi realizada uma pesquisa qualitativa virtual no grupo Viva Sem Glúten (VSG), da rede social Facebook, na qual foram consultados os registros armazenados no grupo por 65 meses, que totalizaram 510 postagens e seus respectivos comentários. Os dados foram agrupados em categorias, e foi realizada análise temática de conteúdo, adotando-se os referenciais teóricos sobre o cuidado em saúde. A análise revelou que as buscas por um diagnóstico e por tratamento adequado frequentemente são descritas como uma peregrinação, sendo decorrentes das fragilidades no cuidado em saúde, traduzidas pela falta de conhecimento atualizado dos profissionais sobre as DRG e por problemas na relação profissional-paciente. As fragilidades no cuidado em saúde e os diagnósticos tardios contribuem para aumentar o risco de complicações e óbitos. Nesse contexto, o grupo VSG se destaca em seu papel de grupo de apoio e rede de solidariedade, favorecendo o esclarecimento e o empoderamento de inúmeras pessoas com DRG.

Gluten-related disorders affect 1% to 6% of the population, with complications and high risk of short and long-term morbidity and mortality. Since 2009, Brazil has a Clinical Protocol of Therapeutic Guidelines for Celiac Disease, but there are frequent complaints by persons with gluten-related disorders concerning the lack of healthcare professionals' knowledge of this topic and the difficulties related to healthcare, for both diagnosis and treatment. This study aimed to understand the weaknesses in healthcare perceived by persons with gluten-related disorders. An online qualitative survey was conducted in the Living Without Gluten group on Facebook, consulting the records saved by the group for 65 months, which totaled 510 posts and the respective comments. The data were grouped in categories, and thematic content analysis was performed, adopting the theoretical references on healthcare. The analysis revealed that the searches for diagnosis and adequate treatment were often described as a forced pilgrimage, resulting from shortcomings in healthcare, including lack of up-to-date knowledge on gluten-related disorders among the healthcare professionals and problems in the physician-patient relationship. Weaknesses in patient care and late diagnoses contribute to increasing the risk of complications and deaths. In this context, the Living Without Gluten group plays a leading role as a support group and network of solidarity, favoring increased awareness and empowerment of numerous Brazilians with gluten-related disorders.

Los desórdenes relacionados al gluten afectan de 1% a 6% de la población, con complicaciones y alto riesgo de morbimortalidad en corto y largo plazos. Desde 2009, Brasil posee un Protocolo Clínico de Directrices Terapéuticas para la Enfermedad Celíaca, sin embargo, son comunes las quejas de las personas con desórdenes relacionados al gluten, respecto a la falta de conocimiento de los profesionales de salud en esa temática y las dificultades relacionadas con el cuidado en salud, en relación tanto con el diagnóstico como con el tratamiento. Este estudio se marcó como objetivo comprender las fragilidades en el cuidado en salud percibidas por personas con desórdenes relacionados al gluten. Se realizó una investigación cualitativa virtual en el grupo Vivir Sin Gluten (VSG) de la red social Facebook, en la que se consultaron los registros almacenados en el grupo durante 65 meses, que totalizaron 510 posts y sus respectivos comentarios. Los datos se agruparon en categorías y se realizó un análisis temático de contenido, adoptándose los referenciales teóricos sobre el cuidado en salud. El análisis reveló que las búsquedas de un diagnóstico y tratamiento adecuado frecuentemente se describen como una peregrinación, siendo derivados de las fragilidades en el cuidado en salud, traducidas por la falta de conocimiento actualizado de los profesionales sobre las desórdenes relacionados al gluten y por problemas en la relación profesional-paciente. Las fragilidades en el cuidado en salud y los diagnósticos tardíos contribuyen a aumentar el riesgo de complicaciones y óbitos. En este contexto el grupo VSG se destaca en su papel de grupo de apoyo y red de solidaridad, favoreciendo la información y el empoderamiento de innumerables personas con desórdenes relacionados al gluten.