Gluten Free : Baker With Celiac Disease Goes Gluten Free

Leslie Renken

Being diagnosed with celiac disease is a blow for most people. Following a gluten-free diet is difficult -- it usually means giving up favorite foods.

So you'd think Dahinda resident Nancy Brown, an avid cook and field editor for Taste of Home Healthy Cooking magazine, would have been devastated. She wasn't.

"I felt like it was the first day of the rest of my life -- it was the craziest thing," Brown said.

She'd been contemplating the possibility of having cancer, so having a disease that can be controlled with diet was a huge relief.

"I could do anything if I could just live. There's no medicine, no surgery. Yeah, it's long-term, but it's just food. I can change my diet," she said.

Wheat gluten is a protein found in wheat, rye and barley. Celiacs can't digest it, and the resulting immune response damages the lining of the small intestine. This causes diarrhea, nausea and abdominal pain.

Brown, 50, had been ill for weeks before receiving the diagnosis. While she realizes now that she'd had mild symptoms most of her life, she started experiencing acute symptoms a year and a half ago, just before Thanksgiving.

"I got so weak that I couldn't even make it up to bed at night," Brown said. "I slept through Christmas."

Her doctor was stumped. He ran all sorts of test and had ordered a bone marrow biopsy to look for cancer when Brown stumbled upon the idea of celiac disease.

"My middle daughter, Amy, is a vegetarian and we had a birthday party for her one night. We had lots of gluten -- pasta and garlic bread," Brown said. "Afterward I was up all night. I was so sick." The incident made Brown think about the symptoms someone with celiac disease once described to her.

"I got online and Googled it," Brown said. "I had 22 of the 23 symptoms."

An undiagnosed epidemic

According to Dr. Victor Lawrinenko, a gastroenterologist with OSF Medical Group, one in 125 people have celiac disease. It's more common in people of Northern European heritage, especially those from Ireland, Lawrinenko said. Because it has a genetic component, children of celiacs have a 10-percent chance of being allergic to gluten.

"All first-degree relatives should be tested," said Lawrinenko. After Brown was diagnosed, she had all but the youngest of her six children tested. Her oldest, Amy, 21, tested positive for the disease, finally determining the cause of the rashes she'd been suffering for years, Brown said.

"A skin rash, dermatitis herpetiformis, is a common symptom of celiac disease," Lawrinenko said. Symptoms can vary greatly from person to person, he said. Some will have iron deficiency and anemia, some might have liver enzyme abnormalities. Some people might experience weight loss and vitamin deficiencies along with abdominal discomfort and gas.

Often the symptoms celiacs experience are mild and can be attributed to other things. They can even come and go. Because of this, many celiacs go undiagnosed for years. The disease damages the lining of the small intestine, leading to the inability to absorb key nutrients like iron.

"As more of the bowel becomes involved, you're just not absorbing these nutrients," said Lawrinenko. "You don't have the building blocks to support your body."

Undiagnosed celiac disease can cause chronic complications, including lymphoma of the small intestine and malignancies in other parts of the gastrointestinal tract, said Lawrinenko.

Testing adults for celiac disease is relatively new. Twenty years ago it was almost unheard of.

"In the past it was considered a pediatric disease," Lawrinenko said. Tests have become better in recent years, and doctors are now finding many people formerly diagnosed with irritable bowel syndrome are actually allergic to wheat gluten.

Not only are doctors looking for celiac disease more routinely, there is evidence that the disease is becoming more prevalent. A study completed in 2009 by a research team led by Mayo Clinic's Dr. Joseph Murray found that intolerance of wheat gluten is four times more common today than it was in the 1950s. Environmental factors may be to blame. People are eating more processed wheat products, and today's genetically-altered wheat contains more gluten than it did 50 years ago.

But not everyone troubled by wheat gluten has celiac disease. Some people are simply sensitive to wheat, Lawrinenko said.

"These folks have typical symptoms, but the tests are all negative," said Lawrinenko. "Yet these patients respond to a diet that's void of any gluten products."

The key is to be aware of symptoms, Lawrinenko said.

"It's very important to be vigilant and to not just ignore these symptoms," he said. "It's important to be in tune to your body -- it will tell you if something is wrong."

Gluten-free lemon meringue pie

Eating gluten-free is a formidable task, but Brown is quite creative in the kitchen -- she's been cooking since she was 12 years old.

"My mother started working so I started doing the cooking," Brown said. "Every day I made home-made bread. My brother and sister picked out recipes, and I made everything they wanted. I just have always loved, loved food."

Celiac disease took away that love, but only temporarily. After about two weeks of eating gluten-free, she started feeling better and her appetite came back in a big way.

"I was hungry for mushrooms, garlic, asparagus," she said. "I found out later these are all foods that help your intestines heal."

Part of what makes gluten-free eating difficult is that the protein is hidden in many processed foods. Even condiments like catsup and soy sauce contain gluten. Celiacs learn to look for words like "hydrolyzed vegetable protein" and "triticale X triticosecale," in the ingredients of their favorite products. Even innocuous looking ingredients like "caramel coloring" or "seasonings" can contain gluten. Because of this many Celiacs prepare their meals from scratch.

After learning the basics, it's relatively easy to prepare a tasty gluten-free main course, but deserts are another issue altogether. Most contain flour, and since wheat gluten is the part of flour that makes things stick together and get fluffy, goodies made with non-wheat flours tend to be flat, dry and hard.

"They just don't have the texture and height that things made with flour do," said Brown. But she was not willing to accept crumbling cookies, nor was she going to give up desert. Brown took on the challenge of baking gluten-free with gusto.

"It was fun," Brown said. "I felt like I was 12 years old again and learning how to bake."

She experimented with flours ground from rice, millet, and sorghum. She did research online and learned that things like xanthan gum and gelatin improve texture. In the end she developed four different types of gluten-free flours to use in all her recipes -- one for pasta and pie crust, a second for cookies, a third for bread, and a fourth for cake. There's not a recipe in the little box her mother gave her when she was 16 years old that cannot be prepared gluten-free with good results.

Brown was not content to keep the gluten-free goodies she developed to herself. She has an entrepreneurial spirit. In October 2011, goodlifebaking.com was born. Brown takes online orders for her products and will even bake special requests for her customers.

"Someone asked me to make a carrot cake recently," she said. Brown loves to fulfill cravings like that. Many celiacs have simply given up baked goods for lack of a good gluten-free alternative.

"I got an order from an older man who probably hasn't had cookies in years because he ordered one of everything on my website," Brown said.

Locally Brown sells her goods at the Saturday morning RiverFront Market in Peoria, Granny Goodwitch bakery in East Peoria, thirty-thirty Coffee Co. in Downtown Peoria, and En Season Cafe in Galesburg.

"Being diagnosed with celiac disease has given me the opportunity to live my life again, and better," she said. "That's why I named the business Good Life Bakery. To be able to help other people to take control of this disease, well I guess that's my way of giving back."

Brown is busy planning the expansion of her business. She's debating whether to patent her flour blends or to write a cookbook with the recipes in it. She's also thinking about teaching food classes and selling her recipes online. Opportunities abound, and Brown is enjoying every minute of her new-found life. She's effectively turned a devastating diagnosis into an exciting business opportunity.

"When life gives you lemons, make a lemon meringue pie -- that's just me. It's got to be gluten-free, but I'll make a lemon meringue pie."

Leslie Renken can be reached at 686-3250 or lrenken@pjstar.com. Follow her on Twitter, @LeslieRenken, and Pinterest, larenken.

(c)2012 Journal Star (Peoria, Ill.)

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