By MARY SHEDDEN
MEDIA GENERAL NEWS SERVICE
Published: April 18, 2008

Painful or boring. When it came to eating, those used to be the only options for Janet Heitler.

Diagnosed with celiac disease 12 years ago, the Tampa, Fla., resident realized that unless she wanted to live a life of extreme stomach pain, she needed to remove wheat and similar grains from her life. She and her husband, Henry, decided to educate themselves and others about the then-little-known intolerance to wheat, rye and barley.

“There were no options,” she says of her early gluten-free meals. “There were vegetables and plain chicken breasts.”

Today, Heitler isn’t just an expert at searching labels for gluten and potential contamination; she also has mastered socializing and eating out in a gluten-filled world. That includes tricks such as taking her own crackers and food to parties held by friends unprepared for her dietary restrictions.

It helps that awareness of celiac disease is growing and food manufacturers are responding to growing demand for gluten-free items. That’s likely because the National Institutes of Health says 1 in 133 people in the United States today is diagnosed as celiac. And many more - 1 in 22 individuals - are suspected of having less-serious intolerance, the government agency says.

Still, Heitler says, it takes constant effort to stay healthy, and that is in part why she oversees the Tampa Bay Celiac support group, which now includes 200 to 300 active members. It takes a network of people offering tips and advice to keep from getting frustrated by the unrelenting risk of wheat-based products.

“You do it because if you don’t, you will be sick. It’s really self-preservation,” she says. “I tell people to remember the sickest day they ever had and stick that in the back of their head. And pull that memory back when a basket of gluten bread is placed on the dinner table.”

When it comes to celiac disease or following a gluten-free diet, there are no absolutes, Heitler says. But there are a few key basics:

Celiac is forever: Celiac disease is an immune reaction to gluten, defined by the NIH as a protein found in wheat, rye and barley. It affects the digestive system or other parts of the body. Symptoms vary but can include diarrhea, abdominal bloating and pain, irritability or depression. Irritability is a common symptom for children with celiac.

For people with celiac, gluten damages the small intestinal lining and its fingerlike growths called villi. Villi normally absorb nutrients from the foods we eat into the bloodstream. People with celiac are unable to get those critical nutrients. Thus, the only known treatment is to follow a gluten-free diet.

It’s not just wheat: Key gluten ingredients are wheat, rye, barley and oats, which are found in products from pasta to soups. Gluten-free diets look for alternatives containing tapioca, rice, corn or buckwheat. And there’s an alternative today for nearly food and drink, from cookies to beer.

Melanda Lugo of Seffner started cooking gluten-free six years ago for her daughter, Zoe, who has autism. Some advocates say a diet that removes gluten and other by-products can improve the behavior of individuals diagnosed with autism’s wide spectrum of developmental disorders.

“A 30-minute trip to Publix turned into an hour and a half. But we knew it would be time-consuming,” says Lugo, who also has removed casein (or milk protein) from Zoe’s diet and has seen great results from the revised diet. “If you’re not somebody who traditionally reads labels, it can be a learning experience.”

Preparation is critical: Contamination is one of the major problems people with celiac disease encounter. For example, steak kabobs available at a local meat counter likely are gluten-free, but their placement next to breaded beef cutlets increases the potential for contamination, Heitler says. The same risks apply in salad bars that include croutons or other breads, or even restaurants where fresh vegetables may be blanched in water that also cooked pasta.

Gluten-free foods are everywhere: Meat, produce, vegetables and most dairy products are gluten-free, meaning cooking options are not as limited as once thought. Also, most major grocers offer gluten-free specialty products, which are often found in the natural and organic section of the store. The Tampa Bay area’s three largest grocers, Publix Supermarkets, Sweetbay Supermarket and Wal-Mart, all offer some variety. Publix has a list of gluten-free products on its Web site.

Heitler, who doesn’t promote one store over another, says natural and organic stores such as Whole Foods, Organic & Gourmet and Abby’s Health & Nutrition are likely to have a wider selection. The staff also is better versed in understanding the needs of the celiac shopper, she says.

You can expect to pay more. A pound of major-brand pasta may cost about $1; a gluten-free version may cost about $3.

Ingesting doesn’t always mean eating: Eating isn’t the only way celiac people can be exposed to gluten. Shampoo, lotions, vitamins and even Play-doh can trigger a reaction. That’s why labels should always be examined, and friends wanting to feed a celiac need to take extra precautions, Heitler says.

Resources are plentiful: Heitler says local support groups are the best way to stay informed, both online and in person. For example, her discovery of a new gluten-free beer led to a party featuring the oft-elusive elixir and pizza made with gluten-free crust.

Lugo swears by a network of online recipe blogs and magazines such as “Clean Eating.” In fact, her passion for cooking led to the creation of her own blog: gluten-free/casein-free mama ( http://www.gfcfmama.blogspot.com).

“There’s a lot we can learn from each other,” she says.

Mary Shedden is a staff writer for The Tampa Tribune.

GROUPS AND WEB SITES:

The National Institutes for Health recommends the following resources on celiac disease:

American Dietetic Association: http://www.eatright.org

Celiac Disease Foundation: http://www.celiac.org

Celiac Sprue Association/USA Inc.: http://www.csaceliacs.org

Gluten Intolerance Group of North America: http://www.gluten.net

National Foundation for Celiac Awareness: http://www.celiaccentral.org

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition: http://www.naspghan.org

Talk To Restaurant About Preparation

Ordering gluten-free food off a restaurant menu isn’t impossible, but it does take a lot of homework.

National chains often include gluten-free menus on their Web site and at their restaurants.

But don’t assume having a special menu means the food won’t somehow be contaminated by wheat or other gluten during its preparation, says Janet Heitler, leader of the Tampa Celiac support group.

It’s most important you talk to your server about the preparation. Call ahead of time and speak to the manager if necessary, say the writers of “The Essential Gluten-Free Restaurant Guide” ($23.95, Triumph Dining), a listing of 4,700 locations nationwide offering some level of gluten-free food.

“Focus your effort on engaging with the restaurant staff and asking the right questions to have a safe and delicious gluten-free meal,” says Ross Cohen, president of Triumph Dining.