Specialized Organizations for Diseases Related to Celiac Disease

The diseases associated with celiac include Dermatitis Herpetiformis; Insulin Dependent Diabetes Mellitus (type I); Systemic Lupus Erythematosus; Sjogren's Syndrome; Scleroderma, Grave's Disease; Addison Disease; Myasthenia Gravis; Autoimmune Chronic Active Hepatitis; and Erythematosus.

Other disorders are thought to have an immunological basis making them prevalent in CD patients and their relatives. Such disorders include thyroid disease, asthma, pulmonary diseases, rheumatoid arthritis, serum IgA deficiency, glomerulonephritis, IgA nephropathy, vasculitis, ulcerative colitis, Crohn's disease, liver disorders, polymyositis, and sarcoidosis.

When multiple groups are available, choose the best organization for your individual situation. Some questions to ask are: their goals, charter, membership fees, other requirements, and any local chapters.


Table of Contents

General Reference Material

ADDISON's DISEASE

ARTHRITIS

ASTHMA

AUTISM*

CANCER

CELIAC DISEASE

CROHN's DISEASE

DIABETES

GENERAL PURPOSE ORGANIZATIONS

GRAVES DISEASE

HEPATITIS

IMMUNE*

IBS*

LUPUS

MILK/CASEIN/LACTOSE

MYASTHENIA GRAVIS

NUTRITION*

OSTEOPOROSIS*

ROSACEA*

SCLERODERMA

SJOGREN

YEAST (CANDIA)

 

 

* A common problem but not always an associated disease.

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General Reference Material

Specialized organizations may be of assistance to those suffering a disease genetically related to CD or prevalent in celiacs. If an organization is not listed, here are a few techniques for finding one:

Library reference material

There are several Web sites that allow free MEDLINE searching:

LISTSERVE(R)

  • The American Autoimmune Related Diseases Association AARDA has an excellent site for obtaining a definition of autoimmune diseases.
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    ADDISON's DISEASE

    Addison's disease is a rare endocrine, or hormonal disorder that affects about 1 in 100,000 people. It occurs in all age groups and afflicts men & women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and non exposed parts of the body.

  • Addison's disease occurs when the adrenal glands do not produce enough of the hormone cortisol and in some cases, the hormone aldosterone
  • National Adrenal Disease Foundation, 505 Northern Blvd., Ste. 200, Great Neck, NY 11021, (516) 487-4992
  • Addison's Disease support forum http://www.healinglight.com/addisons/
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    ARTHRITIS

  • Arthritis Foundation, 1314 Springs St. NW, Atlanta GA 30309, (800) 283-7800
  • National Arthritis & Musculoskeletal & Skin Disease Information Clearinghouse, PO Box AMS, Bethesda, MD 20892, (301) 495-4484
  • Don Wiss's Rheumatoid Arthritis & Diet: www.PaleoDiet.com/ra/
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    ASTHMA

  • Asthma and Allergy Foundation of America, 1717 Massachusetts Ave., NW Ste 305, Washington, DC 20036, (800) 727-8462
  • National Jewish Center for Immunology and Respiratory Medicine, 1400 Jackson St., Denver, CO 80206, (800) 222-5864
  • Asthma Web Page http://www.cs.unc.edu/~kupstas/FAQ.html
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    AUTISM

  • Autism Research Institute, 4182 Adams Ave, San Diego, CA 92116 (619) 281-7165
  • For parent's who wish to implement the gluten free and casein free diet. www.GFCFdiet.com
  • The Autism Network for Dietary Intervention publishes a newsletter. ANDI, P.O. Box 17711, Rochester, NY 14617-0700. The web page is located at www.AutismNDI.com
  • Don Wiss's Autistic Spectrum and Diet. www.PaleoDiet.com/autism/
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    CANCER

    (Not an associated disease, but a marginal diet may increase the risk of some cancers 10 to 15 times)

  • American Cancer Society, 1599 Clifton Road, NE, Atlanta, GA 30329, (800) 227-2345, http://www.cancer.org
  • American Institute for Cancer Research Nutrition Hot Line, (800) 843-8114
  • CancerCare, 1180 Avenue of the Americas, New York, NY 100236, (800) 813-HOPE
  • The National Cancer Institute, CancerNet
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    CELIAC DISEASE

    Support Groups

    A local support group is helpful to improving our "quality of life". Regardless of your experience level with the Gluten-Free diet, there are many benefits of knowing a local celiac. To assist in finding a local group, these files shows the location and point of contact for support groups by countries.

    United States and Canada E-Mail discussion Lists

    Celiac List, subscribe by sending to CELIAC-subscribe-request@LISTSERV.ICORS.ORG

    This List's WWW site, http://www.enabling.org/ia/celiac/index.html

    The following institutions provide direct care to patients and conduct research relating to celiac disease:

    Celiac Center Beth Israel Deaconess Medical Center

    Celiac Disease Center at Columbia University

    Celiac Disease Center University of Chicago

    Center for Celiac Research University of Maryland School of Medicine

    Wm. K. Warren Research Center for Celiac Disease

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    CROHN's DISEASE

  • Crohn's & Colitis Foundation of America, 444 Park Ave. S. 11th Fl., New York, NY 10016, (212) 685-3440
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    DIABETES

  • American Diabetes Association, PO Box 25757, Alexandria, VA 22314, (800) 232-3472
  • Canadian Diabetes Association
  • HealthLine
  • Juvenile Diabetes Foundation, 432 Park Ave., S., New York, NY 10016, (800) 223-1138, e-mail: jbroch@jdf.usa.com
  • National Diabetes Information Clearinghouse (NDIC), 1 Information Way, Bethesda, MD 20892-3560, (FAX) (301) 907-8906
  • CELIAC-DIABETES (CELIAC-DIABETES@@LISTSERV.ICORS.ORG)
  • Diabetes Inforamtion (SP-DIABETES-LIST@LISTSERV.ACSU.BUFFALO.EDU)
  • Diabetes List (DIABETEST@listserv@lehigh.edu)
  • Low Carbohydrate Diet for Diabetes List (LC-Diabetes@@LISTSERV.ICORS.ORG)
  • Managing Your Diabetes from Lilly
  • DIABETES CARE magazine
  • Reference link to other Internet Diabetes sites www.cruzio.com/~mendosa/faq.htm.
  • Children with Diabetes The on-line community for kids, families and adults with diabetes.
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    DERMATITIS HERPETIFORMIS

  • See celiac disease
  • American Academy of Dermatology, PO Box 4014, Schaumburg, IL 60168-4014, (708) 330-0230, http://www.derm-infonet.com
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    GENERAL PURPOSE ORGANIZATIONS

  • Allergy and Asthma Network, (800) 727-8462
  • The Alliance of Genetic Support Groups, 35 Wisconsin Cir., Ste 440, Chevy Chase, MD 20815, (800) 336-4363, e-mail: alliance@capaccess.org, http://medhelp.org/www/agsg.htm
  • Ask-A-Nurse, available at selected hospitals around the country, (800) 535-1111
  • Digestive Disease National Coalition http://www.ddnc.org

  • Disabilities & Managed Care Web site includes link to current research. health insurance programs, and an overview of issues related to disabilities and managed care
  • Food Allergies/Intolerances, Amsterdam Kliniek, Reigersbos 100, 1107 ES Amsterdam z.o., 31 (0)206975361 Fax: 31 (0)206975367, http://www.wellness.demon.co.uk/
  • Food Allergy Network, 10400 Eaton Place Suite 107, Fairfax, VA 22030 (800) 929-4040, E-mail: foodallergy@worldweb.net, http://www.foodallergy.org
  • National Digestive Disease Information Clearinghouse, PO Box NDDIC, 9000 Rockville Pike, Bethesda, MD 20892 (301) 468-6344
  • National Health Information Center, PO Box 1133, Washington, DC 20013, (800) 336-4797
  • National Library of Medicine, 8600 Rockville Pike, Bethesda, MD 20894 (800) 272-4787,http://www.nlm.nih.gov/
  • National Organization for Rare Disorders, PO Box 8923, New Fairfield, CT 06812, (203) 746-6518, http://www.pcnet.com/~orphan/
  • Food Allergy and Anaphylactic Network, 10400 Eaton Place, Suite 107, Fairfax, VA.22030-2208
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    GRAVES DISEASE

  • National Graves Disease Foundation, 320 Arlington Rd., Jacksonville, FL 32211, (904) 724-0770
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    HEPATITIS (liver)

  • American Association for the Study of Liver Disease, 6900 Grove Rd, Thorofare, NJ 08086, (800) 257-8290
  • American Liver Foundation, 1425 Prompton Ave., Cedar Grove, NJ, 07009, (800) 223-0179
  • Children Liver Foundation, 14245 Ventura Blvd., Sherman Oaks, CA 91423, (800) 526-1593
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    IBS

  • Help for IBS.com
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    Immune

  • Chronic Fatigue and Immune Dysfunction Syndrome Association, PO Box 220398, Charlotte, NC 28222 (800) 442-3437
  • Chronic Fatigue Syndrome and fibromyalgia Assoc., 3521 Broadway, STE 222, Kansas City, MO 64111 (816) 931-4777
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    LUPUS

  • American Lupus Society, 3914 Del Arno Blvd., Ste. 922, Torrence, CA 90503, (800) 331-1802
  • LE Support Club, 8039 Nova Ct., North Charleston, SC 29420, (803) 764-1769
  • Lupus Foundation of America, 4 Research Pl., Ste. 180, Rockville, MD 20850, (800) 558-0121
  • Lupus Network, 230 Ranch Dr., Bridgeport, CT 06606, (203) 372-5795
  • Terri Gotthelf Lupus Research Institute, 3 Duke Pl., South Norwalk, CT 06854, (800) 825-8787
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    Milk/Casein/Lactose

  • (Not an associated disease, but a but this problem is often encountered in undiagnosed celiacs)
  • No-Milk List (No-Milk@@LISTSERV.ICORS.ORG)
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    MYASTHENIA GRAVIS

  • Myasthenia Gravis is an autoimmune neuromuscular disease causing muscle weakness, especially in the eye muscles, face, tongue, and limbs.
  • Myasthenia Gravis Foundation, 53 W. Jackson Blvd., Ste. 660, Chicago, IL 60604, (800) 541-5454
  • Muscular Dystrophy Association, 3561 East Sunrise Drive, Tucson, AZ 85718
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    NUTRITION (General health information)

  • American Dietetic Association, http://www.eatright.org
  • National Center for Nutrition and Dietetics Consumer Nutrition Hot Line,(800) 366-1655
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    OSTEOPOROSIS (A possible problem for celiacs)

  • National Osteoporosis Foundation, 1150 17th St. NW, Ste 500, Washington, D.C. 20036, (202) 223-2226, http://www.nof.org
  • Foundation For Osteoporosis Research and Education, 3120 Webster St., Oakland, CA 94609, (510) 832-2663, http://www.FORE.org
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    Rosacea

    For people who suffer from the acne like skin disease, Rosacea, to offer support and encouragement to each other. Treatment regimes, triggers, research discussions are encouraged. (Not an associated disease).

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    SCLERODERMA

    Scleroderma literally means hard skin. It is thought to result from narrowing of blood vessels which in turn lead to fibrosis of skin and multiple organs.

  • Scleroderma Federation, One Newburg St., Peabody, MA 01960, (508) 535-6696
  • Scleroderma International Foundation, 704 Garderner Center Rd., New Castle, PA 16101, (412) 652-3109
  • Scleroderma Research Foundation, Box 200, Columbus, NJ 08022, (800) 723-6700
  • Scleroderma Support Group, 8852 Enloe Ave., Garden Grove, NJ 92644, (714) 892-5297
  • United Scleroderma Foundation, PO Box 399, Watsonville, CA 95077, (800) 722-4673, outreach@scleroderma.com
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    SJOGREN

  • Sjogren's Syndrome (SS) is a chronic, systemic inflammatory disorder of unknow etiology, characterized by dryness of the mouth, eyes, and other mucous membranes.
  • National Sjogren Syndrome Foundation, 3201 West Evans Dr., Phoenix, AZ 85023, (800) 395-6772
  • Sjogren Syndrome Foundation, 382 Main St., Port Washington, NY 11050, (516) 767-2866
  • Dry.Org -- Internet resources for Sjogren's Syndrome, www.dry.org

  • Sjogren's Syndrome List (SS-L@POSTOFFICE.CSO.UIUC.EDU)
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    Yeast (Candia)

  • Yeast-L List (Yeast-L@@LISTSERV.ICORS.ORG)
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    Copyright

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    Disclaimer

    This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

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