Going gluten free - Jackson Clarion Ledger

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When Will Huff, 13, was diagnosed with celiac disease three years ago, "it changed everything," his mom, Stacy Huff, says.

At first, she sort of panicked considering that favorite kid foods such as pizza, doughnuts and cakes would no longer be available (or so she believed) to her son. "I thought, I don't even know what to put on the table tonight," Huff, of Madison, says.

That overwhelming feeling is quite common among parents suddenly faced with myriad challenges of a gluten-free lifestyle, according to Dr. April Ulmer, a pediatric gastroenterologist with GI Associates and Endoscopy Center in Jackson. She and dietitian Sandy Davis, also with GI Associates, have both witnessed parents breaking down in tears when faced with adapting kids to a gluten-free diet.

Gluten is a protein found in wheat, barley and rye. When people with celiac disease or those with gluten sensitivity eat foods containing gluten, it triggers an autoimmune response in the small intestine and prevents nutrients from being absorbed.

The good news is awareness of celiac disease has increased in the past 20 years - one in every 133 people in the United States is affected. Food manufacturers and restaurants are offering more options and recipes are readily available online and in books.

But families still need help navigating the daily obstacles of a restricted diet, so Davis begins with focusing on what kids can have.

"Do you like Freetos, Snicker Bars?" Davis will ask kids. They are often surprised to learn the items are gluten-free.

"Just about everything you like, there is an alternative. I try to focus on the positive," she says.

For example, naturally gluten-free foods are fruits, vegetables and fresh meats. Davis considers General Mills a trendsetter in providing gluten-free foods. "You can do just about anything with Bisquick," she says of the General Mills baking mix.

Huff's approach to ensuring Will had what he needed began with throwing out garbage bags full of food items. Then she focused on what to pack him for lunch. In the beginning, only the evening meal was gluten-free at home.

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"It's a learning process," Huff says. "The hardest thing to get used to was the loss of convenience."

Stops at fast-food eateries before practices ended. Instead, she stocks up on grab-and-go items such as Ore-Ida french fries and gluten-free bagels used to make mini pizza.

Planning ahead became vital to managing the disease. She comes up with solutions so Will can attend sleepovers or when dinner at church is not an option, and she is always a parent listed to bring items for school parties.

At least once a week, the family enjoys eating out maybe at a Mexican restaurant or getting a pizza from Biaggis.

The higher price of some gluten-free foods forced Huff to get creative in the kitchen. Her tortilla chip chicken is family favorite, and she uses Pamela's bread mix or gluten-free flour to make chocolate chip cookies. She started a blog at www.sweetlyceliac.blogspot.com to share recipes and tips.

Huff admits making a few mistakes early on that led to terrible headaches for Will, but now the panic is definitely gone.

When her daughter, Jenny, 10, was diagnosed in November, Stacy was well-versed in what to do.

"As sad as I am that they have to deal with this, I know it could be worse," says Huff.

Both kids are encouraged to manage the disease away from home and not take chances with their health.

Kids need to take ownership of their diet, Ulmer says. "Especially when they know they'll feel so much better."

Other challenges parents face include understanding food labels, eating out, working with schools and getting a proper diagnosis.

While some products meet standards of being gluten-free, they may be processed in places where wheat, barley or rye are present. "Certain brands are completely gluten-free, no cross contamination," Ulmer says.

She also advises parents to contact food manufacturers when they have questions about products and ask restaurant managers about specially preparing food.

"From what parents are telling me, they are facing a lot of issues with schools being cooperative," Ulmer says. Sometimes she has received letters from schools requesting a list of what a child with celiac disease can eat. "There's a real barrier to education."

She's also asking fellow health care providers to be diligent in diagnosing celiac disease.

"It looks totally different than it did prior to 1980s," she says. Instead of abdominal pain, bloating, diarrhea and weight loss, some children have atypical symptoms such as normal growth with constipation or arthritis.

A diagnosis is made with a blood test and because it's hereditary, family members of those with celiac disease are encouraged to get tested.

A person should remain on a normal diet before getting tested to prevent a false negative result.

"The worst thing you can do is go on a gluten-free diet before seeing a doctor," Davis says.

13 Sep, 2011

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