"going Gluten Free"

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Last update: October 04, 2006 – 5:14 PM

Going gluten-free*

More people are learning that they have celiac disease, an illness tied directly to food. And not just any food: It's "the staff of life" -- or the flour it's made with -- that makes them sick.

Al Sicherman, Star Tribune

The doctor had good news -- and bad -- when Barbara Wojcik's celiac disease was diagnosed four years ago. The good news: She'd be feeling better than she had in years. The bad news: She had to change her diet. Forever. No more bread, cake or cookies.

And no more pizza, pasta, pretzels, fried chicken, beer, bagels, gravy, crackers nor a whole lot of ordinary frozen dinners, convenience foods and breakfast cereals. At least not normal versions of those foods. No more of anything that contained even a little wheat, rye or barley.

This was going to be difficult. "Food is so important to a family -- traditions and customs, and emotional well-being. It's really all tied in. To have to change something so basic so radically was really quite stressful," said Wojcik, 52, of White Bear Township.

She learned what her ailment was after 18 years of suffering with what doctors had continued to tell her was, in effect, a touchy gut. Along the way, one advised her to eat a lot of fiber -- like whole-wheat bread.

Her case isn't unusual; celiac disease is often misdiagnosed.

When Erik Binkowski was 2 years old, he had chronic diarrhea. His pediatrician told his parents it was a toddler thing and that he'd grow out of it. He didn't, and the next diagnosis was dairy allergy; Erik was put on soy milk. That wasn't it, either. The next diagnosis was a parasite. But that wasn't the case.

After six months of this, he was falling off the growth chart, his mother said. "He had a huge belly and tiny arms and legs. He truly looked like a starvation victim,"said Shawn Binkowski of Savage. That's when Erik's pediatrician suggested a test for celiac disease. A specialist put Erik on a gluten-free diet and, within two months, the young boy was improving.

"The circles under his eyes disappeared, he was no longer a sad, uncomfortable kid; he was a happy kid," said his mother. "In four or five months, it was very clear; he was thriving."

Celiac disease is often misdiagnosed, according to Binkowski, who is active in the Twin Cities chapter of ROCK (Raising Our Celiac Kids). "We were told, indirectly, 'paranoid mom, neurotic mom,' " she said. "You know something is wrong. You have to be your child's advocate."

That situation is changing for both children and adults, said Dr. Roger Gebhard, a professor of medicine at the University of Minnesota and a gastroenterologist at Regions Hospital in St. Paul. He serves as adviser to the national Celiac Sprue Association and the Northland Celiac Support Group. Increased awareness of celiac disease, as well as awareness that it has been underdiagnosed, has led more doctors to test for it, he said.

Estimates of the number of people who have celiac disease are debatable because many who have it don't know it. A figure widely cited is one person in every 130; Gebhard thinks that figure is too high. But for a malady that many people haven't even heard of, celiac disease is fairly common.

Although it's genetic, not everyone who has the genes for it will develop the disease. Wojcik's son has it; her daughter doesn't, nor do any of Binkowski's three other children. Some people develop symptoms as children, others as adults. Some have obvious digestive symptoms, others don't (although the digestive symptoms are often misdiagnosed as irritable bowel disease and the like).

How to stay healthy

Not eating foods that contain gluten is a necessary step to maintain health. How much further to carry gluten avoidance is a difficult issue. That includes keeping a separate no-gluten cutting board and separate butter dishes so as to avoid the crumb left on the knife when someone else butters a roll.

"We don't know what is the smallest amount of gluten that has an effect," Gebhard acknowledged, "and it seems to differ from person to person. But even if you don't have symptoms, you could still be doing damage." Studies suggest that the risk of several kinds of cancer in people with celiac disease might be related to how painstakingly they avoid gluten.

"You have to live," Gebhard said, "but our advice is to try to be as scrupulous as possible."

A completely normal life isn't possible with celiac disease, but living with it is easier than it used to be, as awareness of the condition grows. There are many gluten-free grocery products, even in mainstream supermarkets. These include bread, pasta, brownie mixes, flour. Natural- and health-food stores contain more products, and there are still more by mail-order. Some of them are pretty good. (In a recent office blind-tasting of brownies, the clear favorite was a flourless -- so gluten-free -- mix.)

High cost of diet

But gluten-free shopping is costly, even at regular supermarkets. That factor helps explain why many celiac sufferers keep a sort of dual kitchen: special products for them, but mostly regular ones for the rest of the household. Wojcik notes she has, with varying success, "converted" some family favorite recipes to gluten-free. But for some things, she makes a version for herself separately. "For spaghetti night, I just make my own noodles for me -- because they like theirs better and because the specialty ones are expensive."

Binkowski has a special cupboard for food and a bin in the freezer for Erik, who is now 10. "It's all gluten-free food that he knows he can have." He also has a separate toaster, a separate butter dish, and there are separate colanders for draining pasta. "I try to make the same dishes for everybody," Binkowski said, "but his will be a gluten-free version."

One of the hardest parts, for adults and kids, is the way the disease affects social situations. When she's invited somewhere, Wojcik said, she often calls the host and asks if she can bring something -- and she brings something she can eat. Sometimes, she said, she suggests that everyone go out for dinner instead.

If it's a catered or work-related event, Wojcik said, "I'll make a few phone calls to see whether I think there'll be anything I can eat. Often I eat before I go, so I'm not hungry or feeling deprived." Sometimes, she said, she just decides not to go.

Binkowski says Erik understands his disease and is careful about what he eats. But it can still be difficult. "When we go to a neighborhood gathering, a family gathering ... everything is celebrated around food, and he can't have most of it," she said. "At a neighborhood picnic, for example, there were cupcakes, which he can't have, so I brought some Skittles for him. Birthday parties are a challenge, school is a challenge; everything we do is a challenge."

His teachers understand. "I talk to them at the beginning of the school year. There's a treat container for him. So when there's a treat for the class, he always has something." (Erik picks out his treats at a co-op, where, Binkowski said, there's a wider gluten-free selection than at supermarkets.) She also prepared a note for teachers to send home to other parents, explaining the disease and what Erik can eat.

Along with all of those concerns, she noted, a big one is that "he's 10, and he doesn't like to be singled out."

But he's coping very well. "I said to him once, 'I wish I could take this on for you, Erik,' and he said, 'Mom, you could never handle it. I'm a much healthier eater because of it' -- this when he was 8."

Read the labels

Gluten-free shopping also means becoming a careful label reader. New nutrition-label regulations from the federal Food and Drug Administration (FDA) this year require plain-language listing of the eight most common allergens, one of which is wheat. That makes things much easier than in the past, when encountering "modified food starch" meant calling the manufacturer to find out if that was wheat starch. Since January, if there's an ingredient that contains wheat but doesn't have "wheat" in its name, the label has to say "(wheat)" or "contains wheat ingredients."

But that regulation doesn't cover rye, oats or barley, and barley is surprisingly present as "malt flavor" in almost every cereal, including such OK-sounding products as corn flakes, Rice Krispies and Rice Chex. Is the vinegar in a salad dressing malt vinegar? Probably not, but a call to the manufacturer (or an indication on one of the many lists of gluten-free products -- if that list is current) will tell you. A few other surprises revealed on labels: Some brands of soy sauce contain wheat, some instant mashed potatoes contain wheat flour and so do many dips.

FDA standards for a voluntary "gluten-free" label are to be implemented in 2008.

Some stores (Whole Foods Market, for example) and manufacturers (Kraft, for example) have online lists of their gluten-free products.

Nutritionist Darlene Kvist of Nutrition, Weight & Wellness in Minnetonka, who says she sees many more celiac patients than she did when she started nutrition counseling 20 years ago, said, "I try to help them look at how many things they can eat: lots of vegetables, protein, fruit, good things. I don't focus on processed foods."

Is the gluten-free lifestyle hard on others in the household? Wojcik had a nice answer: "My husband likes it when I'm healthy."