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Celiac Disease - Treatment & Management
Overview
Treatment of celiac disease (CD) involves removal of gluten from the diet. Supporting the child and family, promoting adherence to a difficult diet, and referral to an advocacy and education group (See the Celiac Disease Foundation) for continuing education regarding celiac disease are important components of Medical Home care.Primary Care Roles
Ongoing monitoring of growth and symptoms of CD and of adherence to the diet, and provision of education and reinforcement of the importance of the diet are key roles. The diet is complicated and expert help from nutritionists is recommended. [Browning: 2006]Pearls And Alerts
Although a small minority of patients don't respond to the gluten-free diet, non-responders should be questioned about (intentional or non-intentional) lack of adherence to the diet, and the diagnosis should be questioned. Unintentional nonadherence is especially common with processed foods. If the diet is being adhered to, question whether the diagnosis is correct. There is a very small group of patients with gluten enteropathy who don't respond to the gluten-free diet. If this is being considered, a referral to gastroenterology may be helpful.
Practice Guidelines
Elson, CO.
NIH Consensus Statement regarding the diagnosis and treatment of celiac disease.
NIH Consensus Development Conference on Celiac Disease, 2004; Bethesda, MD.
/ http://consensus.nih.gov/2004/2004CeliacDisease118html.htm
Diagnostic and management information for celiac disease from the NIH.
NIH Consens State Sci Statements.
NIH Consensus Development Conference on Celiac Disease.
NIH Consens State Sci Statements.
2004;21(1):1-23.
PubMed abstract
Kupper C.
Dietary guidelines and implementation for celiac disease.
Gastroenterology.
2005;128(4 Suppl 1):S121-7.
PubMed abstract
Hill ID, Dirks MH, Liptak GS, Colletti RB, Fasano A, Guandalini S, Hoffenberg EJ, Horvath K, Murray JA, Pivor M, Seidman EG.
Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for
Pediatric Gastroenterology, Hepatology and Nutrition.
J Pediatr Gastroenterol Nutr.
2005;40(1):1-19.
PubMed abstract / Full Text
Systems
Gastro-Intestinal & Bowel Function
- Adherence to a gluten-free diet improves quality of life and decreases the likelihood of osteoporosis, intestinal lymphoma and other associated illnesses. However, because gluten is ubiquitous in the American diet, adherence can require substantial lifestyle changes.
- It can be difficult to identify ingredients that contain hidden gluten; sometimes it becomes necessary to contact food and pharmaceutical manufacturers to be sure.
- Some food items that appear safe may not be, and children with CD and/or their families must learn to read labels. Cold cuts, soup, candy, soy sauce, and even some medications may contain gluten.
- With removal of gluten from the diet, healing begins in the small intestine, absorption of nutrients improves and overall health and growth should improve. If there is incomplete clinical response, adherence to the diet (due to intentional or unintentional inclusion of gluten in the diet) and/or the diagnosis should be questioned. There is a very small percentage of patients who don't respond to the gluten-free diet and these patients should be referred to gastroenterology. Several treatment regimens may be tried for these rare patients; there are no guidelines. [O'Mahony: 1996]
- Although there is no way to screen for lymphoma and adenoma, maintain a low threshold for exploring these diagnoses if symptoms present in patients with celiac disease.
Subspecialist Collaborations and Other Resources
Pediatric Gastroenterology (see Services below for relevant providers)
Periodic visits to gastroenterology may be helpful to update education on the gluten-free diet and monitor the child's response.
Nutrition/Growth/Bone
7 KB)
).
Identification and treatment of initial nutritional deficiencies should be accomplished at the time of diagnosis.
Children with CD also need screening and treatment for osteoporosis and deficiencies of iron, calcium, phosphorus, folate,
B12, and fat-soluble vitamins.
Subspecialist Collaborations and Other Resources
Nutrition/Dietary (see Services below for relevant providers)
The gluten-free diet is difficult to follow and can be confusing, especially regarding processed foods and medications. Consultation with a nutritionist familiar with CD can be very helpful to the family.
Resources
Information & Support
For Professionals
Celiac disease (GeneReviews)
Detailed overview of celiac disease, testing, genetics, resources, reviews, and research; hosted by NCBI (National Center
for Biotechnology Information).
For Parents and Patients
Support
Celiac Disease Foundation
Provides support, information and assistance to people affected by Celiac Disease/Dermatitis Herpetiformis (CD/DH).
General
Celiac disease (MedLinePlus)
Brief description and links to many reliable sources of information, compiled and maintained by the National Library of Medicine.
Celiac disease (NDDIC)
General information and links to a lot more, from the National Digestive Diseases Information Clearinghouse, National Institutes
of Health.
Practice Guidelines
Elson, CO.
NIH Consensus Statement regarding the diagnosis and treatment of celiac disease.
NIH Consensus Development Conference on Celiac Disease, 2004; Bethesda, MD.
/ http://consensus.nih.gov/2004/2004CeliacDisease118html.htm
Diagnostic and management information for celiac disease from the NIH.
Elson, CO, Editor.
NIH Consensus Statement regarding the diagnosis and treatment of celiac disease.
NIH Consensus Development Conference on Celiac Disease, Bethesda MD..
2004;.
Hill ID, Dirks MH, Liptak GS, Colletti RB, Fasano A, Guandalini S, Hoffenberg EJ, Horvath K, Murray JA, Pivor M, Seidman EG.
Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for
Pediatric Gastroenterology, Hepatology and Nutrition.
J Pediatr Gastroenterol Nutr.
2005;40(1):1-19.
PubMed abstract / Full Text
Recommendations for the diagnosis and treatment of celiac disease in children from the North American Society for Pediatric
Gastroenterology, Hepatology, and Nutrition.
Kupper C.
Dietary guidelines and implementation for celiac disease.
Gastroenterology.
2005;128(4 Suppl 1):S121-7.
PubMed abstract
From the Dieticians in Gluten Intolerance Diseases, ADA, a discussion of nutritional issues in the gluten free diet, including
nutrient deficiencies and the increased incidence of obesity in this population.
NIH Consens State Sci Statements.
NIH Consensus Development Conference on Celiac Disease.
NIH Consens State Sci Statements.
2004;21(1):1-23.
PubMed abstract
NIH Conference recommendations on the definition, diagnosis, and treatment of celiac disease.
Patient Education
The Gluten Free Diet Guide
( 7 KB)
Sample list of gluten-free foods from Practical Gasteroenterology, 1999.
Services
Pediatric Gastroenterology
See all Pediatric Gastroenterology services providers (2) in our database.
For other services related to this condition, browse our Services categories or search our database.
Helpful Articles
PubMed Search on Celiac Disease in children for last 2 years.
See J, Murray JA.
Gluten-free diet: the medical and nutrition management of celiac disease.
Nutr Clin Pract.
2006;21(1):1-15.
PubMed abstract
Catassi C, Fasano A.
Celiac disease.
Curr Opin Gastroenterol.
2008;24(6):687-91.
PubMed abstract
Authors
| Authors: | Lynne M Kerr MD, PhD, 3/2009 Daniel Jackson M.D., 7/2008 |
| Content Last Updated: | 3/2009 |
Page Bibliography
Browning MF, Levy HL, Wilkins-Haug LE, Larson C, Shih VE.
Fetal fatty acid oxidation defects and maternal liver disease in pregnancy.
Obstet Gynecol.
2006;107(1):115-20.
PubMed abstract
O'Mahony S, Howdle PD, Losowsky MS.
Review article: management of patients with non-responsive coeliac disease.
Aliment Pharmacol Ther.
1996;10(5):671-80.
PubMed abstract