Understanding Celiac Disease

Three years ago, Marissa Hayes of Stamford had bad abdominal pain, was very bloated and gassy, and threw up after most meals. Her boyfriend thought she was bulimic. Despite years of tests and seeing doctors, she kept getting worse. Finally, one doctor performed an endoscopy and biopsy and told Hayes she has celiac disease.

"My whole life changed with that diagnosis," she says. "My small intestine was very damaged, and that was scary, but at least I knew what I had to do to get better -- eat nothing with gluten."

Hayes has joined a huge segment of the population who suffer with celiac disease. According to a study by the University of Maryland Center for Celiac Research in Baltimore, one out of every 133 Americans has celiac. As evidenced by Hayes' diagnosis ordeal, it wasn't too long ago that celiac went undiagnosed because the symptoms run the gamut, and can include diarrhea, constipation, abdominal pain, weight loss, anemia and bone loss. And then there are people like Hayes' mom, Kathy Zinsser of Stamford, who never had any symptoms but decided to get tested since celiac is genetic. Six months after Hayes' diagnosis, Zinsser was diagnosed with celiac.

"The most important thing anyone diagnosed with celiac can do is eliminate all gluten from their diet," says gastroenterologist Dr. Jacqueline L. Wolf, author of "A Woman's Guide to a Healthy Stomach." "But that's not as easy as it may seem. Gluten is found in wheat, barley and rye, but it's in some things we never think about: Communion wafers, ice cream, lipstick, even Play-Doh.

"Those with celiac have to become detectives, carefully reading every label, looking for hidden gluten," she adds. "Just because a cereal box says it contains rice cereal doesn't mean it is free of wheat or gluten. Look for a label that says `gluten-free' to be sure."

Wolf says that up to 40 percent of the U.S. population is genetically predisposed to celiac, but only about 5 percent of those develop the disease. Something else has to happen to set the disease in motion -- usually infant exposure to cereal that contains barley, wheat or rye. If given during the first three months of life, it is associated with more than a five-fold increase in risk of developing celiac.

The celiac diet is a lifetime commitment, which often stops celiac sufferers from eating in restaurants. "Fortunately, today, many restaurants are more savvy about allergies, and are getting used to people telling them they cannot eat a certain food," Wolf says. "I tell my patients to call ahead, tell the restaurant the foods you cannot eat, and let them decide if they can accommodate you. And make up a card with the list of foods you cannot eat and slip it to your server, who can talk to the chef."

Wolf would approve of Café Cogolulu, on Route 7 in Wilton, just south of the Ridgefield border. Owner Regina Shula of Stamford opened the 14-seat eatery almost a decade ago, but switched to a totally gluten-free menu 18 months ago. Although she always offered gluten-free food at the café, she was spending too much time washing utensils, pans and equipment to avoid cross-contamination.

"As the word spread that we offered gluten-free food, more and more customers were asking for it," she says. "Over and over again I was hearing from those with celiac that it's so hard to find a little place where the entire family can go, enjoy a good meal, and not have to worry about food issues."

Since switching to gluten-free, Shula has become a walking encyclopedia on celiac. In fact, it's become such a way of life for her, that although she does not have the condition, most of her meals are gluten-free. "I do eat pizza, and I really enjoy it, but after I have a few pieces I want to take a nap. I'm beginning to wonder if it's worth it."

Her café offers a wide range of foods, from soups, sandwiches, salads and dinners such as ravioli and eggplant parmesan, to desserts, such as lemon bars and a high-protein, low-sugar garbanzo bean-based torte, available in chocolate chip, banana and peanut butter varieties. As for bread, Shula couldn't find a commercial one she liked, and after many attempts, finally developed recipes for breads and wraps she says are the best she's ever tasted.

Hayes, too, was dissatisfied with many of the gluten-free products she found in stores. Her mom created some terrific dessert recipes, and Hayes, along with her husband, Brian, started Dream Desserts, a line of gluten-free treats. The couple sells their lemon bars, peanut butter chocolates, and pecan classiques at seasonal farmers' markets, in addition to gourmet stores throughout Fairfield County and on the Web site, foodzie.com.

"At first, it was so hard to eat a gluten-free diet," Hayes says. "A lot of the gluten-free products are inferior. The flours they use are cheap and low quality, primarily coming from corn and potatoes. But now, there are some wonderful products being made that use power grains, amaranth and millet, pushing aside the simple carbs used in the past." For Dream Desserts, Hayes uses a complex flour blend of sorghum, arrowroot, tapioca and brown rice.

"When I think back to how I felt just a few years ago, when no one could tell me what was wrong with me, to how I feel today, I am just so thankful I found a doctor who could help me," she says. "My experience proves the value of a second opinion."

Hayes and Wolf both agree that if a person is having digestive issues, she should try a gluten-free diet for a few weeks to see if a change comes about in their digestive system. "If a person has a sensitivity to gluten, two weeks might be enough to see a change," Wolf says. "For full-blown celiac, it may take four to six weeks before a person begins to feel better, but that is time well spent for a possible lifetime of relief." HL

Understanding gluten

Gluten is the generic name for certain types of proteins contained in the common cereal grains wheat, barley, rye and their derivatives. All gluten must be eliminated when you have celiac disease. All fresh fruits, vegetables, beef, chicken, fish, lamb, pork and dairy products are naturally gluten-free.

ALLOWED

Grains/Flours: Rice, corn (maize), soy, potato, tapioca, beans, garfava, sorghum, quinoa, millet, buckwheat, arrowroot, amaranth, teff, Montina®, flax and nut flours.

Oats: Research indicates that pure, uncontaminated oats consumed in moderation (up to 1/2 cup dry oats daily) are tolerated by most celiacs. Consult your physician or dietician before including oats in your diet and for regular monitoring.

Some alchohol: Distilled alcoholic beverages and vinegars are gluten-free. Distilled products do not contain any harmful gluten peptides. Wines, hard liquor/distilled beverages and some beers are gluten-free.

NOT ALLOWED IN ANY FORM

Beers, ales, lagers and malt vinegars: If they are made from gluten-containing grains and are not distilled, they are not gluten-free.

Wheat: The grains einkorn, durum, faro, graham, kamut, semolina, spelt, rye, barley and triticale.

Frequently overlooked foods that may contain gluten

• Brown rice syrup

• Breading & coating mixes

• Croutons

• Energy Bars

• Flour or cereal products

• Imitation bacon

• Imitation seafood

• Marinades

• Panko (Japanese bread crumbs)

• Pastas

• Processed luncheon meats

• Sauces, gravies

• Self-basting poultry

• Soy sauce or soy sauce solids

• Soup bases

• Stuffings, dressing

• Thickeners (Roux)

• Communion wafers

• Herbal supplements

• Drugs & over-the-counter medications

• Nutritional supplements

• Vitamins & mineral supplements

• Play-Doh

Wheat-Free Is Not Gluten-Free

Products labeled wheat-free are not necessarily gluten-free. They may still contain spelt, rye or barley-based ingredients that are not gluten-free. Spelt is a form of wheat.

Contamination in Food Preparation:

Gluten-free foods must not come in contact with food containing gluten. Contamination can occur:

• If foods are prepared on common surfaces, or with utensils that are not thoroughly cleaned after preparing gluten-containing foods;

• Using a common toaster for gluten-free bread and regular bread;

• Flour sifters should not be shared with gluten-containing flours;

• Deep fried foods cooked in oil shared with breaded products should not be consumed;

• Spreadable condiments (mustard, mayonnaise, jam, peanut butter, margarine) in shared containers. When a person dips into a condiment a second time with the knife used for spreading, the condiment becomes contaminated with crumbs.

• Wheat flour can stay airborne for many hours and contaminate exposed preparation surfaces and utensils or uncovered gluten-free products;

• Foods not produced in a gluten-free environment have the potential to be contaminated with gluten.

-- Celiac Disease Foundation, www.celiac.org

Buckwheat wrap from Cogolulu Café & Catering

Wonderfully pliant, this recipe makes the perfect base for your favorite wrap. Café owner Regina Shula tried many versions to get it just right. The recipe makes about 8-10 good-sized wraps; you can double up on the recipe and freeze the leftover batter for later use. The wraps can be frozen and pulled out on an as-needed basis, as long as they are separated by deli or waxed paper before being frozen.

dry ingredients

1 cup millet flour

1/2 cup buckwheat flour

1/2 cup sorghum flour

1/2 cup arrowroot or tapioca starch

2 teaspoons xantham gum

1 teaspoon salt

1 1/2 teaspoons baking powder

1 tablespoon dry minced onion

1/2 teaspoon garlic powder

1 teaspoon thyme (fresh is best)

wet ingredients

4 tablespoons olive oil

1 tablespoon honey or agave nectar

1/4 teaspoon apple cider vinegar or rice wine vinegar

2 cups hot water

1/2 cup almond or hemp milk (or regular milk)

method

In a large bowl, whisk together the dry ingredients.

In a separate bowl, mix together wet ingredients.

Beat wet ingredients into dry mix until the batter is smooth. (If you want to make a pancake mix, use about half the amount of water)

Lightly oil a crepe pan, griddle pan or frying pan. (Pam works great!) Place pan over medium high heat and heat until hot, until a drop of water sizzles in the pan.

Use a 1/3 cup measure or standard ice cream scoop to measure out batter. Place batter in the middle of the pan, and working quickly, spread out batter with a spatula (light touch) to desired circle/size -- either 6 or 8 inches.

Cook about 1 minute (golden brown) and flip; cook for another minute on the other side.

Remove from pan and place wrap on waxed paper. Repeat until you have 8 to 10 wraps.

Stuff & roll with favorite fillings, serve at room temperature, or warm them.

Freeze what you don't use, but place waxed paper between wraps, then wrap them well with plastic wrap.

Note: The batter will thicken if it sits too long. Just add more hot water to get desired consistency.