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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

  • refractory celiac disease
  • intractable celiac sprue

Disorder Subdivisions

  • type I refractory sprue
  • type II refractory sprue

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, small intestinal bacterial overgrowth or hypogammaglobulinemia.



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 impossible to predict which patient of those with celiac sprue will develop RS.

Resources

Association of Gastrointestinal Motility Disorders, Inc.

12 Roberts Drive

Bedford, MA 01730

Tel: (781)275-1300

Fax: (781)275-1304

Email: gimotility@gmx.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 10016-7374

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

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 Institute of Diabetes, Digestive & Kidney Diseases

Office of Communications & Public Liaison

Bldg 31, Rm 9A06

31 Center Drive, MSC 2560

Bethesda, MD 20892-2560

Tel: (301)496-3583

Email: NDDIC@info.niddk.nih.gov

Internet: http://www2.niddk.nih.gov/



International Foundation for Functional Gastrointestinal Disorders

700 W. Virginia St., 201

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

20350 Ventura Blvd

Ste 240

Woodland Hills, CA 91364

USA

Tel: (818)716-1513

Fax: (818)267-5577

Email: cdf@celiac.org

Internet: http://www.celiac.org



Academy of Nutrition and Dietetics

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

Internet: http://rarediseases.info.nih.gov/GARD/



National Foundation for Celiac Awareness

P.O. Box 544

224 South Maple Street

Ambler, PA 19002

Tel: (215)325-1306

Fax: (215)643-1707

Email: info@celiaccentral.org

Internet: http://www.CeliacCentral.org



For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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

Last Updated:  2/7/2013

Copyright  2006, 2010, 2013 National Organization for Rare Disorders, Inc.

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