Celiac sufferers finding more answers for a once-mysterious disease

When 5-year-old Fiona Brady gets sick, it’s usually because she’s “been glutened.”

That’s the phrase her family uses to describe the excruciating pain she goes through when she accidentally eats food containing gluten. She’ll likely vomit and remain in a fetal position for up to eight hours, said her mother Karen Brady, of Huntley.

“Someone compared it to feeling like glass is going through the stomach,” she said.

Fiona has celiac disease, a digestive disorder affecting children and adults that does not allow foods containing gluten to be properly absorbed. The food creates a toxic reaction that damages the small intestine and causes other health problems.

But celiac awareness is growing along with the availability of gluten-free foods.

Celebrities, such as Elisabeth Hasselbeck, who has the disease and wrote the book, “The G-Free Diet: A Gluten-Free Survival Guide,” have brought attention to celiac.

It is believed one out of 133 people have celiac, but go undiagnosed. And many with the disease struggled for years before getting the simple blood test used to screen for it.

“Nobody would test me,” said Elizabeth Secora of McHenry, who hopes to start a support group through an affiliation with the Celiac Disease Foundation. She was diagnosed a couple years ago at age 41 after a lifetime of suffering.

“When I was diagnosed, there was just not a lot of information,” she said. “A lot of doctors didn’t really know about it.”

The symptoms of celiac – unexplained weight loss or gain, bone or joint pain, fatigue, bloating, gas, abdominal pain, chronic diarrhea or constipation – are similar to other conditions, such as irritable bowel syndrome.

That’s why it can be a difficult diagnosis, said Dr. Laura Buthod, a pediatrician with Centegra Primary Care. In roughly 15 years, she said she’s worked with about five children with celiac.

“Sometimes we’ll diagnose the parent when we find it in the kids and they didn’t realize,” she said. “They just thought it was a little bit of a bellyache.”

In young children, the disease can cause weight loss and a distended or swollen belly, mimicking the symptoms suffered by malnourished children.

That was the case with Fiona, who was diagnosed at age 3 after experiencing symptoms since she was 18 months old. Karen Brady said her children are relatively small, so she didn’t think too much of Fiona’s petite size.

But her daughter kept getting sick.

“I felt like we should have a bat phone to the doctor’s office,” she said.
She eventually spoke with her father-in-law, who was diagnosed with celiac as an adult. He and Fiona suffered similar symptoms. She pushed for the blood test, despite the fact that doctors were reluctant to do it.

After the diagnosis, Karen Brady started her daughter on a gluten-free diet. Fiona was better within a few months. At about 36 pounds, she’s still small for her age, but is finally gaining weight, her mother said.

The only treatment is diet, Buthod said.

“That’s as easy as it is and as hard as it is,” she said. “It seems like an easy answer, but this is tough.”

Gluten is the common name for proteins in specific grains, including wheat, rye, barley and triticale.

Wheat also comes in the forms of drum, semolina, spelt, kamut, einkorn and faro.

Imagine constantly hunting labels for these as well as phrases, such as “this product was processed in a facility that has wheat.”

A dietitian can help, said Erica Kronkey of Crystal Lake, a registered dietitian who worked with the Brady family.

“You don’t realize how many things have this in it, even things like medication and lip gloss,” she said. “It crosses over to more than just diet.”

Awareness of the disease is positive, but the gluten-free diet is becoming “kind of a buzz word,” Kronkey said.

Those with the disorder can lose weight, but the diet should not be used as a weight-loss method, she said. “You only do it if you have to,” she said.

In Secora’s case, insurance wouldn’t pay for a nutritionist, so she felt overwhelmed.

“Part of the frustration was a lack of support,” she said. “That first trip to the grocery store, I kind of left in tears.”

Like many dealing with celiac, Karen Brady spends much of her time reading labels. “If I don’t have a label, she can’t eat it,” she said. “Until we started with the gluten-free diet, we had no idea how much this was in everything.”

Stores, such as Trader Joe’s, Whole Foods and health food stores, carry a fairly wide variety of gluten-free foods, while others, such as Meijer, Woodman’s and Jewel-Osco, are starting to carry more of the foods, Brady said.

The foods can be pricey, though, with a loaf of bread costing anywhere from $5 to $6, she said.

Some restaurants do offer gluten-free menus, including several locally, such as Pizzeria Uno, Marcello & Sons and Outback Steakhouse. Nick’s Pizza & Pub recently added a gluten-free pizza to the menus at its Crystal Lake and Elgin restaurants.

Deerfields Bakery in Schaumburg features gluten-free cakes and cookies. And Betty Crocker now makes a line of gluten-free baking mixes.

Even with the offerings, the Bradys have to be extra careful because Fiona is sensitive even to the slightest bit of gluten. If a gluten-free pizza has been cut with a knife that previously cut a pizza with gluten, it has been contaminated enough to cause trouble.

Fiona was sick for five hours after eating gluten-free Italian Ice at an ice cream shop. The scooper had been washed, but other scoopers used to scoop out of the same Italian Ice container apparently had not.

Even touching items, such as a grocery cart handle, modeling clay or soap containing gluten, can cause Fiona to break out in a rash. And if she happens to put her hand in her mouth after being exposed to it, she can get sick.

Karen had at least three meetings with Fiona’s pre-school teachers before the start of school. “After Christmas break, they finally got it,” she said.

Something as seemingly harmless as a sensory table with flour could hurt Fiona if she breathes it in or touches a toy with remnants of the flour on it, her mother said.

“I don’t think people understand the severity of it, the damage it can do,” said Betty Kelly, Fiona’s pre-school teacher at The Learning Tree in Huntley.

Kelly became familiar with the disease when her son was tested for celiac as a child. Teachers had to be sure Fiona played with her own gluten-free modeling clay, ate her own snacks and used her own soap.

“We had to look above and beyond the obvious to see how our day would affect her,” she said.

Fiona can’t eat treats given at birthday parties. At a Bible school once, she refused a cupcake. Unaware, volunteers encouraged her to eat it. She now wears a medical ID bracelet because of situations like this.

And she’ll likely face even more problems when she starts kindergarten this fall, her mother said. She worries about art projects, such as the use of paper mache that contains gluten.

“I had someone say, ‘It’s not a peanut allergy. She’s not going to die,’” Karen Brady said. “It can be just as damaging as having a peanut allergy.”

Celiac groups, free testing
• For information, go to www.celiac.com.
• To reach Elizabeth Secora of McHenry, a representative of the Celiac Disease Foundation (www.celiac.org) who is hoping to start an area support group for those with the disease, e-mail emorgan816@comcast.net.
• The University of Chicago offers free screenings for Celiac Disease every October, with this year’s screening scheduled for Oct. 10. Visit www.celiacdisease.net/free-blood-screening for information.

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