By Jan Howard

A local support group helps its members cope with a disease that is often overlooked or misdiagnosed by doctors. The Nutmeg Celiac Support Group meets every other month at Danbury Hospital except in the summer.

 The group was formed about 1988 by mothers who had children with celiac disease, which causes a sensitivity to gluten and grain products, according to Edith Meffley of Ridgefield, who has been the group’s program chairman for ten years. She became involved because a child had the disorder.

Eating foods such as pizza, pasta, and bread, or even licorice and beer, can be seriously damaging for a person with celiac disease. Chewing gum, communion wafers, and some vitamins could also present digestive problems. Eating out at a restaurant or traveling often present problems.

About 50 members belong to the Celiac Support Group, with 15 to 30 attending meetings, Mrs Meffley said. It is affiliated with the Celiac Sprue Association – USA. Dues are $15 a year. Goals of the national organization include educating doctors about the disease and raising money for research.

The local group produces a newsletter for members four to six times a year that contains information about new food products, helpful hints, recipes, and advice from nutritionists.

Longtime members serve as advisors to newly diagnosed members. “The support group is helpful for information and tips from other members,” Mrs Meffley said. “Many of the people have been misdiagnosed. A person becomes undernourished.”

Eileen Gallo of Newtown, the treasurer of the group, has been a member since 1993.

“I got so sick that I weighed 92 pounds,” she said. “It was pretty bad. It was the culmination of having something for years and being treated for something else.”

Because her body was not absorbing nutrients, she became anemic. Her doctor, unsure of what was wrong with her, suggested changes in her diet to eliminate grains, and this helped.

The Celiac Support Group has been like a lifeline to her. “I know people with the same problem, and we help each other. You have to keep educating yourself. It’s an ongoing process.

 “I went to a dietitian who referred me to the group. I was overwhelmed by this disease. It was wonderful to just listen to people of different ages who had the same problems. It was great to have someone to talk to that understood what I was going through. Every time I go I learn something. They are very good at sharing new information.”

Members write to food companies for samples of food that is gluten free because food from mail order companies is very expensive, she said. A box of spaghetti could be $3 a box. Trying it first helps members avoid buying items they do not like or would not use.

Though she is from a large family, Mrs Gallo knows of no one else affected by the disease. “It is prevalent in Ireland where my ancestors came from.”

There is no medicine to take. People with celiac disease must eliminate gluten and wheat products from their diet by reading labels and not buying processed food.

Since 1993 more distinct labeling of ingredients in food products has helped, Mrs Gallo said. “The more they give us the better.”

However, she noted, “You have to cook your own food.” She buys mixes and makes her own bread and baked goods. When eating out, she orders simple things, such as a steak and potatoes.

“There’s a lot to be aware of. It’s hard to be a guest in people’s homes,” she said. “I use to love to bake.”

Traveling can also be a nightmare, she said. “I’d like to go to New Orleans and experience the food, but I know I can’t so I stay home. I grin and bear it. It could be worse.”

Mrs Gallo said she never wants to have another summer like 1993. “My system just fell apart. I had about a month of getting worse before my doctor thought of this diet. I had a bunch of tests. My electrolytes were down, and I’d been anemic for years.

She is no longer anemic because her body is now able, through careful attention to diet, to absorb nutrients. Consequently, she has regained the weight she had lost.

“You can’t get better without help,” she said. “You have to be careful about what you eat.”

Celiac Disease

Celiac disease, which is also referred to as celiac sprue, nontropical sprue, or gluten sensitive enteropathy, is a chronic, genetic digestive disorder triggered by the consumption of gluten, the common name for a type of protein found in all forms of wheat, rye, barley, and possibly oats. It results from an immune response gone awry.

 It is believed that as many as one in 250, or nearly one million, Americans could be living with celiac disease. Delays in diagnosis can be considerable, sometimes from eight to 11 years

When people with celiac disease consume gluten, the absorptive villi of the small intestine are damaged or destroyed, preventing the body from absorbing basic nutrients, such as carbohydrates, vitamins, and minerals. These deficiencies can lead to serious, long-term complications, including severe anemia, osteoporosis, and nervous system disorders. In children, celiac disease is often the cause of unexplained weight loss and failure to grow.

Persons with celiac disease experience a wide range of symptoms, such as abdominal pain, bloating, diarrhea, nausea, weight loss, fatigue, and/or depression. They can also experience neurological symptoms, such as tingling in the fingers and toes, or headaches.

In Europe, celiac disease is recognized as the most common genetic metabolic disorder. Because it is an inherited disease, its prevalence among people in Europe suggests a link to Americans who share these ancestries. Preliminary findings at the Center for Celiac Research at the University of Maryland indicate celiac disease is more common in the United States than was previously thought.

Persons who suspect they may have celiac disease should consult their doctor. The condition can be detected through a blood test that screens for gluten antibodies. A biopsy of the lining of the small intestine is the only way to confirm diagnosis.

Once diagnosed, celiac disease can be controlled through removing gluten from the diet. This sounds easier than it is because gluten-containing grains are staples and often can be found in unexpected places, such as luncheon meats, condiments, and prepared soups. They may also be used as fillers, flavors, or stabilizers.

Once celiacs change their diets, the villi restore themselves, and most people notice an improvement within a short period of time.

The Nutmeg Celiac Support Group will feature a gluten-free cooking demonstration and supper on April 29 at 5:30 pm at the Community Center for Behavioral and Mental Health, a Danbury Hospital facility, 152 West Street, Danbury. For reservations, contact Mrs Meffley at 203/438-6108 after April 6.

For additional information on celiac disease, contact the Celiac Sprue Association – USA, PO Box 31700, Omaha, NE 68131-0700; or the Celiac Disease Foundation, 13251 Ventura Boulevard, Suite 1, Studio City, CA 91604; or attend a meeting of the local support group.