Celiac disease 30 years after diagnosis: Struggling with gluten-free adherence or gaining gluten tolerance?

Lorenzo Norsa, Federica Branchi, Marianna Bravo, Francesca Ferretti, Leda Roncoroni, Francesco Somalvico, Dario Conte, Maria Teresa Bardella, Sabrina Fabiano, Giulio Barigelletti, Luca Elli

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Objectives: Studies investigating patients with coeliac disease (CD) on very long-term follow-up are limited. We aimed to evaluate the characteristics of patients with CD diagnosed more than 30 years ago. Methods: Clinical, histologic, genetic, and demographic data of patients with CD diagnosis made before 1985 were collected and their standardised mortality ratio calculated. According to the gluten-free diet (GFD) status, CD patients were divided into 3 groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. Results: A total of 337 CD patients were included in the study. The standardised mortality ratio was 0.37 (confidence interval 0.10 to 0.94) compared with a matched population. A total of 197 patients were grouped according to GFD compliance, with 35 CD patients reporting chronic voluntary gluten ingestion. No significant differences were found between groups regarding family history of CD, symptoms and histology at diagnosis, autoimmune disorders. Follow-up histology was performed in 63 patients. Twenty patients had normal histology on gluten-containing diet (GCD). Questionnaire scores were lower in patients on GCD. Caregivers scores were not correlated with patients' gluten consumption. Conclusions: Although poor adherence to GFD is the major predictor of persistence of mucosal lesions at follow-up histology, a proportion of patients did not show a relapse of villous atrophy in spite chronic voluntary gluten ingestion, nor increase in mortality. Moreover, GFD knowledge and adherence could be partly lost during the transition between childhood and adulthood.

Original languageEnglish
Pages (from-to)361-366
Number of pages6
JournalJournal of Pediatric Gastroenterology and Nutrition
Volume67
Issue number3
DOIs
Publication statusPublished - Jan 1 2018

Fingerprint

Glutens
Celiac Disease
Gluten-Free Diet
Histology
Caregivers
Mortality
Eating
Diet
Atrophy

Keywords

  • Celiac disease
  • Complications
  • Gluten-free diet
  • Mortality
  • Villous atrophy

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Gastroenterology

Cite this

Celiac disease 30 years after diagnosis : Struggling with gluten-free adherence or gaining gluten tolerance? / Norsa, Lorenzo; Branchi, Federica; Bravo, Marianna; Ferretti, Francesca; Roncoroni, Leda; Somalvico, Francesco; Conte, Dario; Bardella, Maria Teresa; Fabiano, Sabrina; Barigelletti, Giulio; Elli, Luca.

In: Journal of Pediatric Gastroenterology and Nutrition, Vol. 67, No. 3, 01.01.2018, p. 361-366.

Research output: Contribution to journalArticle

Norsa, L, Branchi, F, Bravo, M, Ferretti, F, Roncoroni, L, Somalvico, F, Conte, D, Bardella, MT, Fabiano, S, Barigelletti, G & Elli, L 2018, 'Celiac disease 30 years after diagnosis: Struggling with gluten-free adherence or gaining gluten tolerance?', Journal of Pediatric Gastroenterology and Nutrition, vol. 67, no. 3, pp. 361-366. https://doi.org/10.1097/MPG.0000000000001995
Norsa, Lorenzo ; Branchi, Federica ; Bravo, Marianna ; Ferretti, Francesca ; Roncoroni, Leda ; Somalvico, Francesco ; Conte, Dario ; Bardella, Maria Teresa ; Fabiano, Sabrina ; Barigelletti, Giulio ; Elli, Luca. / Celiac disease 30 years after diagnosis : Struggling with gluten-free adherence or gaining gluten tolerance?. In: Journal of Pediatric Gastroenterology and Nutrition. 2018 ; Vol. 67, No. 3. pp. 361-366.
@article{aa6a8d232f0948f38760764bbb6ed770,
title = "Celiac disease 30 years after diagnosis: Struggling with gluten-free adherence or gaining gluten tolerance?",
abstract = "Objectives: Studies investigating patients with coeliac disease (CD) on very long-term follow-up are limited. We aimed to evaluate the characteristics of patients with CD diagnosed more than 30 years ago. Methods: Clinical, histologic, genetic, and demographic data of patients with CD diagnosis made before 1985 were collected and their standardised mortality ratio calculated. According to the gluten-free diet (GFD) status, CD patients were divided into 3 groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. Results: A total of 337 CD patients were included in the study. The standardised mortality ratio was 0.37 (confidence interval 0.10 to 0.94) compared with a matched population. A total of 197 patients were grouped according to GFD compliance, with 35 CD patients reporting chronic voluntary gluten ingestion. No significant differences were found between groups regarding family history of CD, symptoms and histology at diagnosis, autoimmune disorders. Follow-up histology was performed in 63 patients. Twenty patients had normal histology on gluten-containing diet (GCD). Questionnaire scores were lower in patients on GCD. Caregivers scores were not correlated with patients' gluten consumption. Conclusions: Although poor adherence to GFD is the major predictor of persistence of mucosal lesions at follow-up histology, a proportion of patients did not show a relapse of villous atrophy in spite chronic voluntary gluten ingestion, nor increase in mortality. Moreover, GFD knowledge and adherence could be partly lost during the transition between childhood and adulthood.",
keywords = "Celiac disease, Complications, Gluten-free diet, Mortality, Villous atrophy",
author = "Lorenzo Norsa and Federica Branchi and Marianna Bravo and Francesca Ferretti and Leda Roncoroni and Francesco Somalvico and Dario Conte and Bardella, {Maria Teresa} and Sabrina Fabiano and Giulio Barigelletti and Luca Elli",
year = "2018",
month = "1",
day = "1",
doi = "10.1097/MPG.0000000000001995",
language = "English",
volume = "67",
pages = "361--366",
journal = "Journal of Pediatric Gastroenterology and Nutrition",
issn = "0277-2116",
publisher = "Lippincott Williams and Wilkins",
number = "3",

}

TY - JOUR

T1 - Celiac disease 30 years after diagnosis

T2 - Struggling with gluten-free adherence or gaining gluten tolerance?

AU - Norsa, Lorenzo

AU - Branchi, Federica

AU - Bravo, Marianna

AU - Ferretti, Francesca

AU - Roncoroni, Leda

AU - Somalvico, Francesco

AU - Conte, Dario

AU - Bardella, Maria Teresa

AU - Fabiano, Sabrina

AU - Barigelletti, Giulio

AU - Elli, Luca

PY - 2018/1/1

Y1 - 2018/1/1

N2 - Objectives: Studies investigating patients with coeliac disease (CD) on very long-term follow-up are limited. We aimed to evaluate the characteristics of patients with CD diagnosed more than 30 years ago. Methods: Clinical, histologic, genetic, and demographic data of patients with CD diagnosis made before 1985 were collected and their standardised mortality ratio calculated. According to the gluten-free diet (GFD) status, CD patients were divided into 3 groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. Results: A total of 337 CD patients were included in the study. The standardised mortality ratio was 0.37 (confidence interval 0.10 to 0.94) compared with a matched population. A total of 197 patients were grouped according to GFD compliance, with 35 CD patients reporting chronic voluntary gluten ingestion. No significant differences were found between groups regarding family history of CD, symptoms and histology at diagnosis, autoimmune disorders. Follow-up histology was performed in 63 patients. Twenty patients had normal histology on gluten-containing diet (GCD). Questionnaire scores were lower in patients on GCD. Caregivers scores were not correlated with patients' gluten consumption. Conclusions: Although poor adherence to GFD is the major predictor of persistence of mucosal lesions at follow-up histology, a proportion of patients did not show a relapse of villous atrophy in spite chronic voluntary gluten ingestion, nor increase in mortality. Moreover, GFD knowledge and adherence could be partly lost during the transition between childhood and adulthood.

AB - Objectives: Studies investigating patients with coeliac disease (CD) on very long-term follow-up are limited. We aimed to evaluate the characteristics of patients with CD diagnosed more than 30 years ago. Methods: Clinical, histologic, genetic, and demographic data of patients with CD diagnosis made before 1985 were collected and their standardised mortality ratio calculated. According to the gluten-free diet (GFD) status, CD patients were divided into 3 groups and a specific questionnaire on GFD awareness and gluten-free products was administered to patients and caregivers. Results: A total of 337 CD patients were included in the study. The standardised mortality ratio was 0.37 (confidence interval 0.10 to 0.94) compared with a matched population. A total of 197 patients were grouped according to GFD compliance, with 35 CD patients reporting chronic voluntary gluten ingestion. No significant differences were found between groups regarding family history of CD, symptoms and histology at diagnosis, autoimmune disorders. Follow-up histology was performed in 63 patients. Twenty patients had normal histology on gluten-containing diet (GCD). Questionnaire scores were lower in patients on GCD. Caregivers scores were not correlated with patients' gluten consumption. Conclusions: Although poor adherence to GFD is the major predictor of persistence of mucosal lesions at follow-up histology, a proportion of patients did not show a relapse of villous atrophy in spite chronic voluntary gluten ingestion, nor increase in mortality. Moreover, GFD knowledge and adherence could be partly lost during the transition between childhood and adulthood.

KW - Celiac disease

KW - Complications

KW - Gluten-free diet

KW - Mortality

KW - Villous atrophy

UR - http://www.scopus.com/inward/record.url?scp=85054913470&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85054913470&partnerID=8YFLogxK

U2 - 10.1097/MPG.0000000000001995

DO - 10.1097/MPG.0000000000001995

M3 - Article

AN - SCOPUS:85054913470

VL - 67

SP - 361

EP - 366

JO - Journal of Pediatric Gastroenterology and Nutrition

JF - Journal of Pediatric Gastroenterology and Nutrition

SN - 0277-2116

IS - 3

ER -