By Steve Dixon Ann Rudolph, who has Celiac disease, is an activist in issues surrounding the disease.

Celiac diease is often difficult to diagnose - but the symptoms are very real

By Leslie Boyd
POSTED: May 31, 2002 5:04 p.m.

ASHEVILLE -- Ann Rudolph began having attacks of abdominal pain, vomiting, gas and diarrhea within days after her first child was born in 1958. At first she thought it was the result of a virus she contracted before her daughter was born. But after the virus went away, her symptoms remained.

For weeks, she had the symptoms and the doctor kept telling her to take Kaopectate. She began to lose weight and she was exhausted all the time. She was readmitted to the hospital but tests revealed nothing. Eventually the symptoms improved on their own. But for the next 17 years, including after the births of her second and third children, Rudolph suffered intermittent bouts of the mysterious ailment.

"It was so embarrassing," says Rudolph. "I'd go into the hospital and when I came home people would ask what was wrong and I still didn't know. They did all these tests and they just didn't know. I'm sure everyone thought I was just some kind of hypochondriac."

Rudolph was also plagued by anemia. From the time she was 13, she was almost always anemic. Again, doctors couldn't figure out why.

Finally, she moved from the New York suburbs to Rockford, Ill., where an allergist who was seeing her for a skin rash suggested a full gastrological work-up, including a biopsy of the small intestine.

"That's when I was finally diagnosed with celiac disease," she says. "I was dancing around the kitchen and my kids were wondering why I was so happy about being sick. It just felt so good to know what it was."

Celiac is possibly the most under-diagnosed disease in the United States, says Dr Peter Green of Columbia University's Celiac Disease Center in New York.

"In other countries, doctors know to look for it, but here, medical schools have always taught it's very rare, so no one looks for it," he says.

Once thought to affect about 1 in 3,000 people, recent research shows celiac disease actually affects about 1 in 180 people. Among some populations, the prevalence is as high as one in 122, says Green.

People with celiac can't eat gluten. That means no wheat. In fact, about the only grains they can eat are rice and corn.

"We have to be very careful," says Rudolph. "You'd be surprised at the things that contain wheat."

For example, the breading or batter on many fried foods, thickeners in sauces and fat-free salad dressings and sour cream, even some medications.

"You become adept at reading labels," says Rudolph, who carries a card to give to restaurant chefs when she orders food. That way, they'll know not to dredge the chicken cutlet in flour before they saut it."

Celiac is an autoimmune disease -- the only one that we know what precipitates it, says Green. People who have it must live on gluten-free diets or suffer permanent damage to their digestive systems. By the time someone presents with diarrhea and other digestive disorders, they've probably had it for awhile and may already have damage to their small intestine, the organ that absorbs nutrients from food.

Rudolph was anemic because her body wasn't absorbing iron, no matter how much she ingested. For awhile, doctors thought she might be bleeding internally.

People with celiac disease are also likely to develop osteoporosis, but most doctors who diagnose osteoporosis don't test for celiac. Too often, physicians assume it's caused by declining estrogen levels, says Green.

Celiac symptoms -- tingling in the fingers or toes (peripheral neuropathy), abdominal pain, gas, bloating, diarrhea, weight loss, general weakness and fatigue, irritability or depression, joint pain, muscle cramps, skin rash, mouth sores, and in children, stunted growth or failure to thrive -- can be mistaken for other disorders. Often, people with celiac disease are diagnosed with irritable bowel syndrome, colitis, diverticulosis, Crohn's disease or chronic fatigue syndrome.

One problem is that the disease manifests itself differently in every patient, says Dr. Matthew Wood, an Asheville gastroenterologist and adviser to the local celiac disease support group.

"Sometimes it's very subtle," he says. "Some adult patients don't have any gastric symptoms. Some show symptoms in infancy, as soon as they start eating cereal."

The disease can be triggered by surgery, viral infection, emotional stress, or, as in Rudolph's case, childbirth. People with other autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, thyroid disease or immnoglobulin deficiency are more likely to get celiac disease.

Celiac is diagnosed by taking a biopsy of the small intestine. Normally, the lining of the intestine has tiny protrusions, called villi, which help absorb nutrients. In patients with celiac, the lining is smooth. Doctors can screen for celiac with a blood test to determine the presence of antibodies to gluten. Not everyone with celiac has these antibodies, but most do. In this country, people aren't screened routinely for the antibodies, but in Italy, where all children are screened by age 6, the disease is often caught before damage is done to the small intestine. When symptoms do occur in Italy, the average time to diagnosis is two to three weeks; in the U.S., the time between first symptoms and diagnosis is 10 years.

"We have to get the word out because the consequences can be very serious," says Wood.

Undiagnosed celiac disease can lead to malnutrition, osteoporosis, liver disease or even intestinal lymphoma.

There is no cure for celiac disease, but a gluten-free diet treats it effectively. As soon as Rudolph started on the diet, she began to feel better.

"My energy came back," she says. "I was better immediately, I mean within days. I went back to school and got my master's degree."

Rudolph shops for gluten-free products in health food stores and on the Internet. She's extremely vigilant about keeping gluten out of her diet because of the difference it makes in the way she feels.

"It's a tough diet to stick to," says Wood. "But it's so important to do it for the rest of your life."

Rudolph advises everyone who gets a diagnosis of celiac disease to join a support group because the best way to learn how to stick to the diet is to get the information from people who have experience. She is one of three people who founded the Asheville Gluten Intolerance Group, which meets monthly.

"Wherever you go, the social thing is to eat," says Rudolph. "Buffets are really terrible. You don't know how the food was prepared and you feel rude asking your hostess what's in things, so you just don't eat. You can't eat at a fast-food restaurant. It's very isolating for teen-agers. All their friends are going out for pizza and they can't go."

Rudolph brings her own food onto airplanes because even though most airlines say they have gluten-free meals, they often come with a roll or a package of crackers, which throws the whole meal into question.

"You have to question everything, but the reward is that you feel well," says Rudolph. Contact Boyd at 232-2922 or Lboyd@CITIZEN-TIMES.com

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