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.
General Reference Material
* A common problem but not always an associated disease.
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
- Encyclopedia of Associations, 1994
- The Complete Directory for People with Chronic Illness (ISBN: 0939300-55-9)
- The Merck Manual
There are several Web sites that allow free MEDLINE searching:
The American Autoimmune Related Diseases Association AARDA has an excellent site for
obtaining a definition of autoimmune diseases.
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/
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:
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
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.
The Autism Network for Dietary Intervention publishes a newsletter.
ANDI, P.O. Box 17711, Rochester, NY 14617-0700. The web page is located
Don Wiss's Autistic Spectrum and Diet.
(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
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
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
Crohn's & Colitis Foundation of America, 444 Park Ave. S. 11th Fl., New York, NY 10016, (212) 685-3440
American Diabetes Association, PO Box 25757, Alexandria, VA 22314, (800) 232-3472
Canadian Diabetes Association
Juvenile Diabetes Foundation, 432 Park Ave., S., New York, NY 10016, (800) 223-1138, e-mail: firstname.lastname@example.org
National Diabetes Information Clearinghouse (NDIC), 1 Information Way, Bethesda, MD 20892-3560, (FAX) (301) 907-8906
Diabetes Inforamtion (SP-DIABETES-LIST@LISTSERV.ACSU.BUFFALO.EDU)
Diabetes List (DIABETEST@email@example.com)
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.
See celiac disease
American Academy of Dermatology, PO Box 4014, Schaumburg, IL 60168-4014, (708) 330-0230, http://www.derm-infonet.com
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: firstname.lastname@example.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: email@example.com, 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
National Graves Disease Foundation, 320 Arlington Rd., Jacksonville, FL 32211, (904) 724-0770
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
Help for IBS.com
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
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
(Not an associated disease, but a but this problem is often encountered in undiagnosed celiacs)
No-Milk List (No-Milk@@LISTSERV.ICORS.ORG)
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
American Dietetic Association, http://www.eatright.org
National Center for Nutrition and Dietetics Consumer Nutrition Hot Line,(800) 366-1655
National Osteoporosis Foundation, 1150 17th St. NW, Ste 500, Washington, D.C. 20036, (202)
Foundation For Osteoporosis Research and Education, 3120 Webster St.,
Oakland, CA 94609, (510) 832-2663, http://www.FORE.org
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).
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, firstname.lastname@example.org
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)
Yeast-L List (Yeast-L@@LISTSERV.ICORS.ORG)
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