Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, June 22, 1995 TAG: 9506230003
SECTION: NEIGHBORS PAGE: S-1 EDITION: METRO
SOURCE: LUCY LEE SPECIAL TO THE ROANOKE TIMES & WORLD-NEWS
DATELINE: LENGTH: Medium
Sixteen-year-old John Spence says it makes his social life difficult, but since he's never had these foods, he doesn't really miss them.
John was diagnosed with celiac disease when he was 18 months old. He had recurring flu-like symptoms, a swollen stomach and wasted limbs and lost one-fourth of his body weight. He was in the hospital for four weeks before his condition was properly diagnosed.
In celiac disease (also called nontropical sprue or gluten enteropathy), the lining of the small intestine reacts adversely to gluten, a protein found in wheat, barley, rye and oats. The intestine is less able to absorb nutrients. Anemia, osteoporosis and vitamin and mineral deficiency are common results. If undiagnosed, it can cause severe internal problems which can be fatal.
The biggest problem with celiac lies in the diagnosing. Since its symptoms are similar to cystic fibrosis and Crohn's disease, and it is a relatively rare disease (one in 8,000 Americans have it), many doctors are not familiar with it.
Once it is diagnosed, treatment is simple: don't eat any foods that contain gluten. Simple, that is, until you realize how many foods have gluten.
Because of the lack of awareness and information about the disease, John's parents, Becky and Greg Walter, began an active search for other celiacs several years ago. An item in Neighbors attracted six people who decided to form a support group that now has a membership of about 14 families.
They meet every month or so and share a gluten-free meal. But more importantly, they share recipes, information, stories and frustrations.
Beverly Roberts' story is similar to several of the group members. On April 12, 1993, he woke up with chronic diarrhea. In 42 days, he lost 70 pounds and became anemic. One leg was paralyzed. A three-week stay in a West Virginia hospital resulted in a diagnosis of cancer and the recommendation of exploratory surgery.
Roberts credits Dr. Jonathan Bern, a gastroenterologist at Lewis-Gale Hospital, with saving his life. Bern did a biopsy (the only way to accurately diagnose celiac) and made the correct diagnosis.
Once Roberts knew what he had, he began the frustrating process of developing a gluten-free diet. He now makes bread from rice flour and mixes up his own mayonnaise (the white vinegar in commercial mayos contains gluten).
Recently he went on a Celiac Cruise, sponsored by the Gluten Intolerance Group of Florida. He was one of 392 passengers with celiac disease who, for one glorious week, didn't have to worry about food preparation.
Vince Joyce cites his growing up in Ireland as a mixed blessing. It raised his odds of having the disease, since it affects one in 300 Irish people, but it made diagnosis much easier. There is also a wide availability of gluten-free products in Ireland.
Joyce says he misses his beer more than anything. The only alcoholic beverage that is grain-free is wine.
It's not just food and drink that celiacs have to be wary of. Many medicines, including cough syrup and some aspirin, contain gluten. So does chewing gum. The glue on postage stamps and envelopes has a wheat base.
Eating in restaurants is a special challenge, although one member of the group, Diane Wilcox, has a distinct advantage. Her husband, Howard, is a chef. He does the cooking at home, and when they travel, he speaks with the restaurants' chefs personally about the preparation of Diane's meal. She is so sensitive to gluten she will get sick if her meat is sliced with a knife that was used to slice bread. They like to eat at the Red Lobster Restaurants because there she can order a steamed lobster with nothing else on the plate.
Dr. Bob Amick also worries about "contamination" when eating out. If his family members want a burger and fries, they choose Wendy's. Fast food chains that serve onion rings (Wendy's doesn't) may cook them in the same grease they use for french fries. The breading from the rings would contaminate the fries.
Amy Brisley attends the support group because her 5-year-old, Aaron, is allergic to wheat. Although he doesn't have celiac, she has picked up invaluable tips for preparing and buying wheat-free foods.
For more information on the celiac disease support group, call Becky, 362-0811.
by CNB