Gluten Free: Millions Have Celiac, Few Diagnosed

Part 29 of our award-winning series “Our Children’s Health”

Amanda Brown, of Plainview, works as a student teacher at an elementary school during the week. She also teaches Zumba, a fitness class that combines exercise with Latin music and dance. Two years ago she was a student at SUNY Oneonta, finishing up her sophomore year. Two years ago, she was told she had stomach cancer.

When she first went away to college, Brown was diagnosed with mono. Months later, still sick, she went to the hospital. Doctors found a cyst on the outside of her ovary.

“I just never got better,” she says. A year later, she went back to the hospital with horrible stomach pain, and was given a new diagnosis: an intussusception of the bowel. She was kept overnight, given a CAT scan and sent on her way.

A week later she was back in the hospital, again with severe stomach pain. Diagnosis No. 5: There was nothing wrong.

“It was almost like saying to me, ‘You’re making it up, it’s in your head,’ without verbalizing it,” she says.

Her gastroenterologist back at home found a surgeon she could visit in Cooperstown, N.Y., while she finished her semester upstate. It was finals week, so Brown made an appointment and took the 40-minute trip before her exams, looking for an answer.

“He felt my stomach and told me I had cancer,” she says.

Scared and upset, Brown finished up her semester and went home. Her doctor took a blood test, had her swallow a camera pill that would take pictures of her intestines, and took a biopsy on her small intestine.

She didn’t have cancer.

She had celiac disease, a potentially fatal, but treatable, disease that is almost never diagnosed properly, if at all. Even when it is, parents and children struggle to get others—including doctors and school administrators—to take them seriously.

FRIENDLY FIRE

Every aspect of life—from physical well-being to mental health—is susceptible to damage from celiac disease, an intolerance to gluten, the protein found in wheat, barley and rye. Unlike a wheat allergy, which causes a sudden, severe reaction like breathing difficulty, celiac is an autoimmune disease with a slower onset. Simply put, exposing a celiac to even the tiniest bits of gluten, which the body is unable to digest, causes it to turn against itself and attack its internal organs, waging a war on the immune system and destroying the intestinal walls so food and nutrients cannot be absorbed. Over time, celiac can lead to cancer, malnutrition and other disorders. But because many people think of gluten-free as a diet or fad, the fact that the disease is a serious, chronic, lifelong problem, is often overlooked.

An analysis done by the Hartman Group, a consumer marketing company, in 2009 found 93 percent of the people who buy gluten-free products don’t have celiac disease. They were either excessively health conscious or fad dieters in search of the next trend.

“Just because alternative health practitioners, personal trainers and celebrities are jumping on the gluten-free bandwagon, doesn’t mean it is right for everyone,” says dietician Shelley Case, author of Gluten-Free Diet. “Contrary to popular buzz, the GF diet is not a panacea diet.”

Case worries that too many people will look to the diet to solve all of their problems, from learning disabilities to obesity. The gluten-free diet only alleviates symptoms for those with an intolerance. For those without an intolerance, gluten is an important source of protein, iron and calcium. But as going gluten-free gains more attention, especially in Hollywood, the gluten-free lifestyle is often seen as the next low-carb diet.

“There really is nothing that irritates me more than hearing, ‘It’s just a piece of bread’ or ‘I hear you’re on the Atkins’ Diet’—like it’s the same thing,” says Craig Pinto of Jericho, kicker for the New Jersey Revolution arena football team, who was diagnosed with celiac 10 years ago. “Serious things can result from not getting this treated properly or diagnosed early enough, so it’s sad when it gets passed off as a joke when you can’t have a burger with a bun.”

Since celiac, a multi-symptom and multi-system disease, doesn’t always involve a stomachache, produces strikingly different symptoms in different individuals, and often mimics other disorders, it is commonly misdiagnosed. Celiac could manifest as an intestinal infection in one patient, a rash or growth problems in another and neurological problems or even dementia in a third. Recent studies suggest a gluten connection with some cases of autism. Celiac is also more likely to affect those who already have another autoimmune disorder, like type 1 diabetes or rheumatoid arthritis.

Pinto, who played football for Hofstra during college, was diagnosed with celiac in 2001, 10 years after he was diagnosed with Crohn’s disease, another autoimmune disorder.

“I was a pretty rambunctious little kid, but at that point I wasn’t growing,” he says. “I was pale, I was very sick a lot with stomachaches, but I was active so it was just kind of put off as I just had to settle down, eat and relax for a second.”

At 21 years old, he was still up late at night feeling sick after eating pasta or pizza. Since those who have one autoimmune disease are more likely to have others, and Pinto already had Crohn’s, he was tested for celiac. The test came back positive.

BREAKING BREAD

It’s 2:30 p.m. on a Monday, and Randi Albertelli of Old Bethpage is waiting for her two kids to get off the bus. Amanda, 9, was diagnosed with celiac when she was 5 years old. She had leg cramps, headaches and a distended belly. At her yearly checkup, the doctor found she was anemic.

“It was kind of a red flag because she was such a good eater as a child that we kind of questioned it, but we really didn’t pursue it, unfortunately,” says Albertelli.

As time progressed Amanda came down with other symptoms. She was moody and getting stomachaches.

“Luckily enough my pediatrician tested for celiac disease. We had no idea what it was,” she says. Her stomach had been swelling from malnutrition, even though she was eating like a normal kid.

“It was traumatic, it was devastating,” says Albertelli. “There are so many other horrible things in this world, but as a parent all of a sudden to hear that your child can’t eat certain things, it was upsetting. Now I look at pictures and I see it, and I say, ‘How did we not know?’ You get so mad at yourself as a parent, but I didn’t know.”