A healthy and happy girl suddenly became sick and no one knew why STARVING AMID PLENTY

July 11, 1995|By Amy Ratner | Amy Ratner,Special to The Sun bTC

When my daughter, Amanda, danced in a blue tutu at her recent ballet recital, I noted how much she seemed just like all the other tufted and sequined little Cinderellas.

How far she had come from the day nearly three years earlier when she mysteriously became so ill that she was too weak to walk or hold her head up -- so listless she could not smile.

Up on pink slippered toes, how strong were the legs that once could not carry her. Arched above her head, how full were the arms that once hung at her sides, bony as a skeleton's. Up on that stage, how high and proud she held the head that once flopped on the table at mealtimes. How wide was her smile.

Now nearly 5, Amanda was 2 and perfectly normal when she suddenly became critically ill with a genetic intolerance to a protein found in wheat, oats, barley and rye. Her illness thrust our family from the secure world of the well into the teetering world of the sick.

Amanda's illness began routinely-- a virus with a slight fever, stomachache and diarrhea. But it escalated over the next six weeks to where she looked like one of the starving Somali children I had seen in the newspaper almost every day that fall. She would wake from her nap too tired to play and would slump on the floor if I tried to put her down. Her toys and books lay untouched beside her on the floor. She pushed her beloved brother away whenever he came near. Perhaps worst of all, our laughing, joking girl showed no facial expression and her deep dimples had disappeared.

Blood and stool tests run by her doctor ruled out cancer and the other deadly diseases of my nightmares. Finally, after weeks of hoping for improvement that did not come, she was sent to Johns Hopkins Children's Center, admitted as a difficult-to-diagnose patient. I cringed at the thought that even doctors at this leader in children's medicine thought her case was a tough one.

Even in the hospital, Amanda did not get better. She grew weaker and skinnier, losing almost 25 percent of her weight. Strangely enough, while her body shrank, her appetite grew.

We thought this might be a good sign and gave her all the pretzels, graham crackers, noodles and pizza she could eat. Little did we know these very foods were the answer to the puzzle of Amanda's illness. Then, Dr. Peter Rowe, director of the diagnostic clinic at Hopkins' Children's Center and a skilled sleuth of tricky ailments, put the pieces together. He recalled a child he had once seen in Canada, who lay listless in his crib, just like Amanda.

Amanda, he said, had celiac disease, a sometimes virally triggered genetic intolerance of the gluten found in wheat, oats, barley and rye. Nearly everything we had been feeding Amanda was now poison to her body. The food we had been using to fatten her up was instead destroying her small intestine, which was so badly damaged she could not absorb nutrients. I still get a chill thinking that Amanda was starving to death, first in my house full of food, then, at the hospital, in my arms full of love.

Doctors from around the world this week are meeting in Baltimore to make the diagnosis of celiac disease less traumatic then it was for Amanda. Experts will speak at a symposium on celiac sponsored by the University of Maryland School of Medicine. Dr. Alessio Fasano, director of the division of pediatric gastroenterology and nutrition, has set up the first center for celiac disease in the country at Maryland.

The center includes the only clinical laboratory on the East Coast certified to run tests that can diagnose celiac disease long before it progresses as it did with Amanda. Common symptoms of the disease, which strikes adults as well as children, are diarrhea, projectile vomiting, a bloated belly, muscle wasting, listlessness and irritability.

But celiac is a fox of a disease. It can be life-threatening, as it was for Amanda, or be so sly that the only sign is a child's failure to grow. In the nearly 100-member Baltimore celiac support group to which we belong, there are children who have never had more than the usual childhood sicknesses and those so tortured by its symptoms they would sit and bang their heads on the floor before being diagnosed.

While celiac is common in Europe -- it strikes 1 in 300 there -- it is considered rare in the United States, where estimates are that 1 in 2,500 people are affected. But Dr. Fasano, who came from the University of Naples in Italy, believes those numbers are far too low, so he is doing preliminary studies to show celiac is underdiagnosed in this country.

He screened nearly 170 children and found that five tested positive for the disease. In a random test of 1,000 blood-donor samples, he found one in 200 people showed signs of celiac.

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