Information, support for celiac sufferers
Celiac disease is not an allergy. It is a genetic disorder in which the immune system attacks gluten in food as if it were a virus. The result is a damaged small intestine, with a diminished ability to digest food and absorb nutrients. Gluten is a protein found in wheat, barley, and rye. Those with the disease are urged not to eat those grains.
According to Dr. Ciaran Kelly, director of the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston, about one in 133 people in this country is thought to have the disease. Kelly says his ''guesstimate" is that about half of them feel no symptoms. Because there can be long-term complications from the disease, however, such as iron-deficiency anemia, osteoporosis, and other nutritional deficiencies, Kelly believes that even those with no symptoms should be tested for celiac if they have a close relative with the disease. Testing involves a blood test and an intestinal biopsy.
Kelly says that even those with no overt symptoms often feel better on a gluten-free diet. ''There are a number of patients with apparently silent celiac disease who, when they go on a gluten-free diet, experience a marked improvement in energy and sense of well-being, who report, 'I've never felt so well,' even though they always thought they felt fine."
WENDY FOX
Medical and nutrition help
Beth Israel Deaconess Medical Center, Celiac Disease Center: www.bidmc.harvard.edu, 617-667-7000.
The Celiac Disease Foundation, a national organization: www.celiac.org, 818-990-2354.
Melinda Dennis, registered dietitian and nutrition coordinator at Beth Israel Deaconess Medical Center in Boston, offers counseling, shopping tours, home visits, and classes on maintaining a gluten-free diet: www.deletethewheat.com, 617-667-2565.
Support groups
Celiac.com: www.celiac.com , 707-509-4528. California-based company includes information, support groups, and recipes.
Children's Hospital Boston, Celiac Support Group: www.childrenshospital.org/clinicalservices.cfm ; 617-355-2127.
The Greater Boston Celiac/DH Support Group: www.healthyvilli.org; 617-262-5422, 888-423-5422.
Online shopping
Miss Roben's: www.missroben.com , 800-891-0083. Maryland-based company offers numerous brands of gluten-free products, mixes, and ingredients.
The Gluten-Free
Celiac.com: www.glutenfreemall.com. Offers many brands.
Cookbooks
''The Gluten-Free Bible" by Jax Peters Lowell (Henry Holt and Co.).
''The Best-Ever Wheat - and Gluten - Free Baking Book" by Ann Wenniger with Marc Wenniger (Fair Winds Press).
''The Gluten-Free Gourmet" by Bette Hagman (Henry Holt and Co.).
''The Gluten-Free Kitchen" by Robyn Ruberg (Three Rivers Press).
''The Gluten-Free Family Cookbook" by Donna Washburn and Heather Butt (Robert Rose).
''Simply Delicious Wheat and Gluten Free Cooking" by Thordis Svenningsen Seager (Central Coast Books).
''Wheat-Free, Gluten-Free Cookbook for Kids and Busy Adults" by Connie Sarros (
Local restaurants with extensive menus
Legal Sea Foods: www.legalseafoods.com. Click on ''About Legal" to see the sample menu.