National Organization for Rare Disorders, Inc.

Refractory Sprue

Important
It is possible that the main title of the report Refractory Sprue is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

• Intractable Celiac Sprue
• Unclassified Celiac Sprue
• Refractory Celiac Disease

Disorder Subdivisions

• None

General Discussion

Refractory sprue (RS) is a complex autoimmune disorder much like the more common celiac sprue but, unlike celiac sprue, it is resistant or unresponsive to six months of treatment with a strict gluten-free diet. Gliadin, a component of the wheat storage protein gluten, together with similar proteins in barley and rye, are the villains that trigger the immune reaction in celiac sprue. The diagnosis of RS is made by exclusion, especially of any other disorder that can affect the huge number of thread-like projections that line the interior of the intestine (intestinal villi), such as intestinal lymphoma, Crohn’s disease, or small intestinal bacterial overgrowth.

The intestinal villi are the means by which the gut absorbs fluids and nutrients. In celiac sprue and refractory sprue, these villi shrink and shrivel (atrophy) affecting the absorption of nutrients via the intestines. In celiac sprue, treatment by means of a strict gluten-free diet is usually sufficient to overcome the disorder. However, refractory sprue is just that: refractory or stubbornly resistant to treatment. Only a small percentage of the people with celiac sprue will develop RS, and these patients are almost invariably 30 years of age or older. However, as yet, it is difficult to predict which patient of those with celiac sprue will develop RS.

Resources

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
AGMD International Corporate Headquarters
12 Roberts Drive
Bedford, MA 01730
Tel: (781)275-1300
Fax: (781)275-1304
Email: digestive.motility@gmail.com
Internet: http://www.agmd-gimotility.org

Gluten Intolerance Group of North America
15110 10th Avenue SW
Suite A
Seattle, WA 98166-1820
Tel: (206)246-6652
Fax: (206)246-6531
Email: info@gluten.net
Internet: http://www.gluten.net

Crohn's and Colitis Foundation of America
386 Park Avenue South
17th Floor
New York, NY 10016-9804
USA
Tel: 2126853440
Fax: 2127794098
Tel: 8009322423
Email: info@ccfa.org
Internet: http://www.ccfa.org

Celiac Sprue Association/USA, Inc.
P.O. Box 31700
Omaha, NE 68131-0700
USA
Tel: 4025580600
Fax: 4026434108
Tel: 8772724272
Email: celiacs@csaceliacs.org
Internet: http://www.csaceliacs.org

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

International Foundation for Functional Gastrointestinal Disorders
P.O. Box 170864
Milwaukee, WI 53217
USA
Tel: 4149641799
Fax: 4149647176
Tel: 8889642001
Email: iffgd@iffgd.org
Internet: http://www.iffgd.org

Celiac Disease Foundation
13251 Ventura Boulevard
Suite 1
Studio City, CA 91604
USA
Tel: 8189902354
Fax: 8189902379
Email: cdf@celiac.org
Internet: http://www.celiac.org

American Dietetic Association
216 West Jackson Boulevard
Suite 800
Chicago, IL 60606-6995
Tel: (312)899-0400
Fax: (312)899-4899
Tel: (800)877-1600
Email: infocenter@eatright.org
Internet: http://www.eatright.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

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Copyright  2006 National Organization for Rare Disorders, Inc.

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