Patients often lost in painful mystery

It started with fatigue, one that grew progressively worse over the years. But the most severe problems for Donna Webber arrived in November 1995.

"I had some throwing up," Webber, of Farmingdale, said, "and I had diarrhea wicked bad, sometimes 12 times a day. I was about to go to the emergency room."

Webber, who runs an ice cream stand on Route 201, ultimately lost 35 pounds as a result of her inability to digest food. Today, almost 11 years later, she still can't stomach most foods found in the grocery store or on a restaurant menu.

A person with the disease cannot digest gluten, a protein found in wheat and other grains. The condition is a genetic disorder, meaning it runs in families.

Like Type 1 diabetes and thyroid disease, celiac disease is an autoimmune disorder, a case of the body attacking itself.

That means no pizza from Dominos, no homemade bread from the oven, no soft pretzels at the baseball game, or any other food that contains wheat, rye or barley.

At her ice cream stand, Webber can eat rocky road or any flavor on the board, but the cone, which has gluten, is off limits.

"I have never ever eaten anything deliberately that has wheat in it since I've been diagnosed," Webber said. "It is not hard for me now. It is only hard when somebody takes out a nice, fresh loaf of bread from the oven or when somebody orders a pizza."

Recent research conducted by the University of Maryland Center for Celiac Research puts the incident rate of the disease at one out of every 133 Americans.

The number of people diagnosed with the disease, however, is far fewer than the incident rate, although that is beginning to change as the condition is drawing increasing attention.

"When I first came into practice," MaineGeneral Medical Center gastroenterologist David W. Hay said, " I'd see folks with advanced celiac disease who had gone undiagnosed for years because their primary care docs did not recognize what they were seeing."

Hay said improvements in the blood tests to diagnose the disease is one reason more people with celiac have been identified in recent years.

And as more people get diagnosed, awareness of the disease has spread, making it more likely that a physician will suspect the disorder if he sees some of the common symptoms in a patient.

Those symptoms include weight loss or gain, gas, chronic diarrhea, fatigue, unexplained anemia, muscle cramps, an itchy skin rash and seizures.

Hay said diarrhea is the classic symptom, a direct result of the body's inability to absorb gluten. But for some with the disease, Hay said the symptoms may be limited to mild bloating after meals and slight anemia.

In his 16 years of practice at MaineGeneral, Hay said his office probably has diagnosed more than 50 people with the ailment.

But not everybody is diagnosed. Some figure out the problem themselves. Shyla Spear was one of those people, by necessity really.

About 30 years ago, when Spear, of Fairfield, concluded she had celiac disease, the medical community was largely ignorant of the disorder.

"I was treated like I had rocks in my head," she said, "that I am a silly woman, that it is all made up and that I should forget about it and it will all go away."

Spear, 64, said she suspected food was the cause and thus began an elimination diet. She started with milk and then added wheat products.

The problem, she said, is gluten is in more foods than you might think, as well as in many non-food products -- postage stamps, envelope adhesive, vitamins, medicines to name a few.

Spear has adhered to a gluten-free lifestyle ever since and has helped many others with the disorder, including Webber, through support groups she has organized -- her latest support group meets the second Tuesday of each month at Uncle Dean's Good Groceries in Waterville.

Hay said a gluten-free diet is a huge challenge for most celiac disease sufferers.

"The diet is so difficult that full compliance is only about 50 to 70 percent," he said, "and we certainly see that in our practice."

Both Spear and Webber, however, said that staying on a celiac-friendly diet has not been hard for them.

Spear realizes, though, that some never overcome the thought of having to adopt a dramatically different eating regimen.

"There are those I've known who have said 'Oh, forget it. I can't deal with this,' " she said. "And I feel sorry for them, because they will always feel awful."

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