Living with Celiac Disease

For the first few years of her life, Kayla Lafi seemed to be a perfectly normal little girl—until she reached the age of six. At that point, she stopped growing, and no matter how much she ate, she lost weight. Checkups with her pediatrician revealed nothing out of the ordinary.

“The next two years were awful,” says Kayla, now 17. “I was basically going to school and then to doctor’s appointments.”

Medical experts guessed at every diagnosis from chronic flu to a bone disorder and even cystic fibrosis. No treatment seemed to help, and Kayla’s parents were told she might not live past 15 years of age.

Finally, one doctor gave Kayla an endoscopy and said, “There’s nothing wrong with this child.” There was, however, everything wrong with what she was eating. Kayla had celiac disease, a chronic autoimmune digestive disorder triggered by ingesting food that contains gluten.

The exact cause of celiac disease is unknown, and its symptoms (diarrhea, abdominal bloating and pain, anemia, vomiting, muscle weakness and cramping, bruising, and irritability in children) can be attributed to other illnesses, or dismissed as flu or a stomach virus. In fact, when the sufferer ingests gluten, which is present in far more foods than the suspected grain-based items, the immune system attacks the lining of the small intestine. Left undiagnosed, celiac can lead to malnutrition, liver diseases, cancers of the intestine, osteoporosis, and, in children, failure to grow and thrive.

The gluten-free diet has been touted by celebrities and sold by companies quick to jump on a fad; it’s a fast way to lose weight. For people like Kayla, though, eating gluten-free food can mean the difference between life and death. But, she says, try telling that to an 8-year-old.

“When I was diagnosed almost ten years ago, there was no good gluten-free food,” Kayla says. “Everything I loved to eat—pizza, Oreo cookies, McDonald’s—I was told I couldn’t have anymore. When I went to parties, I couldn’t eat the cake.”

The result was that Kayla frequently cheated on her gluten-free diet. Even if she hadn’t willingly done so, the chances of her ingesting gluten accidentally were high; not many people know that, for people with celiac disease, gluten might as well be a deadly germ. “It’s cross-contamination,” she explains. “All it takes is a knife that hasn’t been properly cleaned after cutting bread, or someone who touched a sandwich touching my food. I was eating salad with grilled chicken at school, but I was still getting sick. Then I realized that the woman who made my food touched my grilled chicken while wearing the same plastic gloves she’d used to handle breaded chicken.”

Because of the high percentage of foods containing gluten, the ease of cross- contamination, and the fact that celiac is still relatively new to most people, nervous teachers sometimes make gluten-intolerant kids sit by themselves at lunchtime. That kind of outcast feeling, along with not being able to eat what other kids eat, can create a difficult time for a young celiac sufferer. “It’s always going to be a part of you,” says Kayla. “You have to commit to an entirely gluten-free lifestyle. People are afraid of that. I’m still afraid of it!”

Because she didn’t know too many other kids with celiac, and in the hope of educating the general public and getting more good gluten-free food, Kayla applied for and won a Scholastic grant to found an organization called Teens Living With Celiac. She offers tips for living gluten-free and other information about the disease on the TLC website. Kayla says that more and more restaurants are offering gluten-free items, and even whole menus. (News of gluten-free pizza in her New Jersey neighborhood recently made her day.) She hopes to campaign for more companies to make gluten-free foods in dedicated facilities, like General Foods does, to reduce the risk of cross-contamination.

“I also want to have summer camps that are entirely gluten-free,” she says. “I hope that in five or ten years it’s a nationally recognized organization. Kids with celiac feel like they’re the only ones on the planet. My job in my organization is giving support to other teens.”  Kayla is holding a second annual fashion fundraiser, Catwalk for Celiac, on May 9 in Wood-Ridge, New Jersey.

If you suspect that you or your child may have celiac (it is hereditary), Dr. Helen Troncoso, a health and wellness consultant, urges testing. “That’s important, because the symptoms are often misdiagnosed as other abdominal or bowel-related issues. Usually a blood serum test will be done. Don’t change your diet before being tested,” she says; this may lead to a false negative.

Honesty with children who have celiac is important. Kayla says that as a child, she didn’t understand the implications of eating a cupcake, but as a teenager, reading about the long-term affects was what made her get serious. “I’m only 4’ 11”, I still have trouble gaining weight, I’m anemic, and I have fibromyalgia—and I’m only 17,” she says. “But I feel so much better since I went gluten-free. I never cheat now.”

For more information on celiac disease, log on to:
http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm
http://teenslivingwithceliac.org/

For a list of foods with and without gluten, click here.

As with any suspected illness or start of a new diet, always consult first with your physician or pediatrician.