Refractory Sprue

National Organization for Rare Disorders, Inc.

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
31214 124th Ave SE
Auburn, WA 98092
Tel: (253)833-6655
Fax: (253)833-6675
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: (212)685-3440
Fax: (212)779-4098
Tel: (800)932-2423
Email: info@ccfa.org
Internet: http://www.ccfa.org

Celiac Sprue Association/USA, Inc.
P.O. Box 31700
Omaha, NE 68131-0700
USA
Tel: (402)558-0600
Fax: (402)643-4108
Tel: (877)272-4272
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: (414)964-1799
Fax: (414)964-7176
Tel: (888)964-2001
Email: iffgd@iffgd.org
Internet: http://www.iffgd.org

Celiac Disease Foundation
13251 Ventura Boulevard
Suite 1
Studio City, CA 91604
USA
Tel: (818)990-2354
Fax: (818)990-2379
Email: cdf@celiac.org
Internet: http://www.celiac.org

American Diabectic Association
120 South Riverside Plaza, Suite 2000
Chicago, IL 60606-6995
Tel: (312)899-0400
Fax: (312)899-4899
Tel: (800)877-1600
Email: knowledge@eatright.org
Internet: http://www.eatright.org

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

National Foundation for Celiac Awareness
P.O. Box 544
Ambler, PA 19002
Tel: (215)325-1306
Fax: (215)643-1707
Email: info@CeliacCentral.org
Internet: http://www.CeliacCentral.org

For a Complete Report

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

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