National Organization for Rare Disorders, Inc.
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.
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.
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
AGMD International Corporate Headquarters
12 Roberts Drive
Bedford, MA 01730
Gluten Intolerance Group of North America
31214 124th Ave SE
Auburn, WA 98092
Crohn's and Colitis Foundation of America
386 Park Avenue South
New York, NY 10016-9804
Celiac Sprue Association/USA, Inc.
P.O. Box 31700
Omaha, NE 68131-0700
NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
International Foundation for Functional Gastrointestinal Disorders
P.O. Box 170864
Milwaukee, WI 53217
Celiac Disease Foundation
13251 Ventura Boulevard
Studio City, CA 91604
American Diabectic Association
120 South Riverside Plaza, Suite 2000
Chicago, IL 60606-6995
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
National Foundation for Celiac Awareness
P.O. Box 544
Ambler, PA 19002
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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