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.
Dr. Fasano says children in Baltimore have a better chance of being diagnosed because doctors here are becoming more aware of the disease through the center. Area endocrinologists now routinely send children who are not growing for blood tests at the celiac clinic. "We had to convince them, but now it is standard," he says.
While celiac disease is difficult to diagnose and comes with numerous lifelong dietary restrictions, the wonder of it is that as soon as gluten, the offending protein, is eliminated, full health returns.
Within days of beginning a gluten-free diet, Amanda was smiling again. Though wobbly at first, she soon walked and, ever since, we have tried to make every step a forward one.
Like Amanda, our whole family has come a long way. When told Amanda would have to go on a gluten-free diet for the rest of her life, I remember momentarily thinking, "Well, she doesn't like whole wheat bread anyway."
When I emerged from the shock of her ordeal and looked in my pantry at home, I realized I had nothing to feed her. I would stand in the bread aisle at the grocery store and get light-headed thinking that if Amanda were trapped here, with all these loaves, she would still starve to death.
Now, I know the brand name of practically every product that is gluten-free. The list is not terribly long because besides obvious things such as bread, pizza crust, cake and cookies, gluten hides in unsuspected places -- the hydrolyzed vegetable protein in hot dogs and canned tuna, natural flavorings in Popsicles, modified food starch in fruit snacks, barley malt in Rice Krispies, soy sauce in Chinese food. Although I still have to read every label when I shop, I now go to the grocery with an eye toward what Amanda can eat rather than what she can't.
At first, she lived mainly on fresh fruit, rice cakes, plain meat and a few rather mealy, gluten-free breads from the health food store. But we've been liberated by a bread machine that makes a decent loaf of rice flour bread in about two hours. Amanda and I bake together and our repetoire includes doughnut holes made from corn starch, chocolate chip cookies made from soy flour, waffle ice cream cones made from sweet rice flour and peanut butter cookies with no flour at all.
While we never will regain spontaneity about food -- we can't run out for pizza, pick up Chinese or attend a friend's backyard barbecue without packing a meal for Amanda -- we try not be limited by this fact of our lives. One spring we ventured to Disney World, finding people anxious to help us keep Amanda fed and well. At our hotel, she became something of a celebrity because the kitchen staff knew about her diet.
"You must be Amanda's mother," the hostess said to me the first time I walked in. They went to such trouble to bread her chicken fingers with rice crumbs, to prepare piles of her rice noodles that we were embarrassed when she left food on her plate.
We have found the same kind of help close to home, too. Shortly after Amanda got sick, our older son's kindergarten teacher put us in touch with a friend familiar with celiac who gave us a care package of tasty gluten-free food. The celiac support group, which meets quarterly at Greater Baltimore Medical Center, is a source of information and empathy, a place where all the food is gluten-free and tips about what and where to eat are traded like stocks.
At first, we worried about how Amanda would eat away from home without us. But numerous mothers have made sure to give her the special cupcake she takes to birthday parties. Others have called ahead to make sure she can eat the candy in the goodie bags. One friend's husband made an emergency trip from Bel Air to Towson when Amanda forgot her bag of food on the way to his daughter's dinner theater birthday party. Our neighbor keeps a supply of rice cakes for Amanda to snack on. In fact, her own daughter now prefers them to cookies or cake.
Amanda's 8-year-old brother, Alexander, once stopped the ice cream man to quiz him on whether any of his products were safe for his sister. "Can you read me the ingredients?" he asked.
But much of the credit for the relative ease with which she lives with celiac disease goes to Amanda herself. I have seen her eat a rice cake while sitting at a table full of other pre-schoolers having chocolate cookies and not mind a bit. I've seen her walk away from bowls full of pretzels, one of her pre-celiac favorites, and not be tempted even a tad.
A friendly employee at McDonald's once unknowingly gave her a pack of cookies after she had tumbled from a chair and was crying. I held my breath, fearing the consequences of this innocent act of kindness. But Amanda took one look at the package and handed it to her brother. When she was still a toddler, she never ate a cookie or a bowl of cereal without asking, "No wheat, Mommy?"
Today, she is as well-versed in gluten-free eating as any nutritionist and will simply refuse something that is not in her diet.
Now that she is older, Amanda sometimes questions why she can't eat wheat. Once, confused that her older brother can, she told a friend, "When I grow up to be a big boy, I'll be able to eat wheat." But then, as always, we gently explained that she is special and her food will always be special, too. That was all the explanation she needed.
Of course, we have fears for the future, the days of dating, and drinking beer, which is on the forbidden list, and wanting so badly to fit in. But they are outweighed by our confidence in Amanda and in ourselves.
Perhaps this confidence is best judged by the choice we made when it came to deciding whether to have another child, despite the possibility that a new baby could also have celiac. We knew another child would be spared the trauma Amanda knew, in part because of the diagnostic work being done in Baltimore, in part because of our own knowledge of the symptoms and treatment of the disease. We looked at our healthy, energetic daughter. Her new brother, Austin, was in the audience on the day she danced.
Amy Ratner lives in Harford County. Her husband, Andrew Ratner, is director of zoned editorials for The Sun.