Pediatric Celiac Disease Patients Who Are Lost to Follow-Up Have a Poorly Controlled Disease

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

Background: Follow-up of celiac disease (CD) patients is recommended for gluten-free diet (GFD) adherence monitoring and complication detection. We recently showed that 35% of children with CD were lost to follow-up (LTFU). We aimed to characterize LTFU population, and thus identify compliance barriers to GFD and follow-up. Methods: 50 LTFU patients were investigated using a telephone questionnaire, regarding frequency of follow-up, serology testing, and adherence to GFD (using the validated Biagi score). Fifty two regular follow-up patients served as controls. Results: LTFU patients had poor adherence to GFD (average Biagi score of 2.0 ± 1.4) compared to controls (3.0 ± 1.0, p < 0.001). Only 22% of LTFU performed periodic celiac serology testing compared to 82% of controls (p < 0.001). LTFU had higher prevalence of positive celiac serology tests (50% compared to 25% of controls, p = 0.01). Fewer LTFU were National Celiac Association members (24%) compared with controls (44%, p = 0.05). Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R2 = 0.26737, p = 0.001), older age at diagnosis (R2 = 0.30046, p = 0.03), and non-membership in a celiac association (R2 = 0.18591, p = 0.0001). Conclusion: LTFU is associated with non-adherence to GFD and positive serology. Risk factors for LFTU should be identified and addressed in order to improve patient care.

Related collections

Most cited references 7

Record: found
Abstract: found
Article: not found

The spectrum of celiac disease: epidemiology, clinical aspects and treatment.

Greetje J Tack, Wieke H M Verbeek, Marco W J Schreurs … (2010)

Celiac disease is a gluten-sensitive enteropathy that affects people of all ages worldwide. This disease has emerged as a major health-care problem, as advances in diagnostic and screening methods have revealed its global prevalence. Environmental factors such as gluten introduction at childhood, infectious agents and socioeconomic features, as well as the presence of HLA-DQ2 and/or HLA-DQ8 haplotypes or genetic variations in several non-HLA genes contribute to the development of celiac disease. Growing insight into the variable clinical and histopathological presentation features of this disease has opened new perspectives for future research. A strict life-long gluten-free diet is the only safe and efficient available treatment, yet it results in a social burden. Alternative treatment modalities focus on modification of dietary components, enzymatic degradation of gluten, inhibition of intestinal permeability and modulation of the immune response. A small group of patients with celiac disease (2-5%), however, fail to improve clinically and histologically upon elimination of dietary gluten. This complication is referred to as refractory celiac disease, and imposes a serious risk of developing a virtually lethal enteropathy-associated T-cell lymphoma.

0 comments Cited 84 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children.

Mohsin Rashid, Shelley Case, J Decker Butzner … (2005)

We sought to characterize the clinical features at presentation as well as the associated disorders, family history, and evaluation of compliance with a gluten-free diet in children with celiac disease from across Canada. All members (n = 5240) of the Canadian Celiac Association were surveyed with a questionnaire. Of the 2849 respondents with biopsy-confirmed celiac disease, 168 who were or = 2 pediatricians before confirmation of the diagnosis. Before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%). A serological test was performed to screen for celiac disease in 70% of those in this population. Eight percent had either type 1 diabetes mellitus or a first-degree relative with celiac disease. Almost all respondents (95%) reported strict adherence to a gluten-free diet, and 89% noted improved health. Reactions after accidental gluten ingestion developed in 54% of the children between 0.5 and 60 hours after ingestion with a median of 2.0 hours. Reactions included abdominal discomfort (87%), diarrhea (64%), bloating (57%), fatigue (37%), headache (24%), and constipation (8%), and most displayed > 1 symptom. Although most adjusted well to their disease and diet, 10% to 20% reported major disruptions in lifestyle. Twenty-three percent felt angry all or most of the time about following a gluten-free diet. Only 15% avoided traveling all or most of the time, and during travel, 83% brought gluten-free food with them all of the time. More than half of the families avoided restaurants all or most of the time. Twenty-eight percent of the respondents found it extremely difficult to locate stores with gluten-free foods, and 27% reported extreme difficulty in finding gluten-free foods or determining if foods were free of gluten. Sixty-three percent of the respondents felt that the information supplied by the Canadian Celiac Association was excellent. Gastroenterologists provided excellent information to 44%, dietitians to 36%, and the family physician to 11.5%. When asked to select 2 items that would improve their quality of life, better labeling of gluten-containing ingredients was selected by 63%, more gluten-free foods in the supermarket by 49%, gluten-free choices on restaurant menus by 49%, earlier diagnosis of celiac disease by 34%, and better dietary counseling by 7%. In Canada, children with celiac disease present at all ages with a variety of symptoms and associated conditions. Delays in diagnosis are common. Most children are compliant with a gluten-free diet. A minority of these children experience difficulties in modifying their lifestyles, and gluten-free foods remain difficult to obtain.

0 comments Cited 54 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Follow-up of patients with celiac disease: achieving compliance with treatment.

Michelle Maria Pietzak (2005)

Celiac disease is the only autoimmune condition for which we know the environmental trigger: gluten. Complete removal of gluten from the diet in a patient with celiac disease should result in symptomatic, serologic, and histologic remission. However, compliance with the gluten-free diet, especially in the United States, is extremely challenging. Compliance can be measured both noninvasively, by dietary history and measurement of serum antibodies, and invasively, by using endoscopic and histologic criteria. The advantages and disadvantages of these various modalities are discussed. The highest rates of compliance are reported in patients who are diagnosed as young children, whereas adolescents and those diagnosed via mass serologic screening have the most transgressions. Barriers to compliance include the poor palatability of gluten-free foods, confusing food-labeling practices, and common comorbid psychologic burdens such as anxiety and depression. Because celiac disease is a multisystemic disorder, physicians need to be aware of the potential autoimmune, nutritional, and malignant complications. An algorithm for the follow-up and management of the newly diagnosed celiac disease patient is presented, which includes regular follow-up; measurement of serum antibodies; eliciting a detailed dietary history; and examination for signs and symptoms of nutritional deficiencies, malignancy, and other autoimmune diseases. Ideally, a team approach to the follow-up of the newly diagnosed patient should include regular supervision by an interested physician, medical nutritional counseling by a registered dietician, and access to local and national support groups knowledgeable about this condition.

0 comments Cited 43 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Journal

Journal ID (publisher-id): DIG

Journal ID (nlm-ta): Digestion

Journal ID (doi): 10.1159/issn.0012-2823

Title: Digestion

Publisher: S. Karger AG

ISSN (Print): 0012-2823

ISSN (Electronic): 1421-9867

Publication date Subscription-year: 2014

Publication date (Print): January 2015

Publication date (Electronic): 19 December 2014

Volume: 90

Issue: 4

Pages: 248-253

Affiliations

^aInstitute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva; Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel; ^bReferral Center for Pediatric Gastroenterology and Nutrition, Children's Hospital Zagreb, School of Medicine, University of Zagreb, Zagreb, Croatia

Author notes

*Yael Mozer-Glassberg, MD, Institute of Gastroenterology, Nutrition and Liver Disease, Schneider Children's Medical Center of Israel, 14 Kaplan St., Petach Tikva 49202 (Israel), E-Mail yaelm3@clalit.org.il

Article

Publisher ID: 368395 Other ID: Digestion 2014;90:248-253

DOI: 10.1159/000368395

PubMed ID: 25531121

SO-VID: 50678aa6-704d-4644-97b0-8748753ad579

License:

Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

History

Date received : 27 May 2014

Date accepted : 15 September 2014

Page count

Tables: 2, References: 8, Pages: 6

Comments

Comment on this article

scite_

Cited by 13

See all cited by

Most referenced authors 88

See all reference authors

- Version 1

Call for Papers: Artificial Intelligence in Gastroenterology

Submit here before May 31, 2024

Pediatric Celiac Disease Patients Who Are Lost to Follow-Up Have a Poorly Controlled Disease

Read this article at

Abstract

Related collections

Karger: Gastroenterology

Most cited references 7

The spectrum of celiac disease: epidemiology, clinical aspects and treatment.

Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children.

Follow-up of patients with celiac disease: achieving compliance with treatment.

Author and article information

Journal

Affiliations

Author notes

Article

History

Page count

Categories

Comments

Comment on this article

Similar content 650

Cited by 13

Most referenced authors 88