Celiac sprue

For many Americans, good health depends on avoiding this common protein

As my 50th birthday approached, I felt as if I was wearing out. I had little energy. Simple things seemed confusing and too difficult to handle. My body ached, and chronic diarrhea kept me close to the bathroom. No matter how much I ate, I still felt hungry. There were days when I was convinced I was dying. Yet my condition stumped doctor after doctor. Some actually suggested I was a hypochondriac.

I managed to drag myself around like this for several years, when one day something flashed through my head. Perhaps this mysterious collection Of symptoms was celiac disease. My younger sister had it. Maybe it ran in the family. After several doctors' visits and tests, I learned that I wasn't dying. My illness was indeed celiac disease and there was a cure for it. While this genetic intestinal disorder is often tough to diagnose, it's remarkably easy to manage through diet and lifestyle changes. Soon I was on my way to feeling healthier than I had in a long time.

WHAT IS CELIAC DISEASE?

Celiac disease (also known as celiac/sprue, gluten sensitive enteropathy or nontropical sprue) is a genetically based malfunction of the immune system. It occurs when the small intestine "attacks" certain glutens, which are proteins found in wheat and rye, as if they were invading viruses. The more gluten one consumes, the more the body rebels, until the lining of the intestine becomes damaged and the body is unable to properly absorb nutrients from food. The resulting deficiencies can lead to other conditions, such as depression, chronic fatigue, anemia, infertility and osteoporosis. "A healthy intestine has numerous ridges and folds," explains Peter Green, M.D., a gastroenterologist at Columbia-Presbyterian Medical Center in New York City and an expert on celiac disease. "But when I look at an intestine damaged by gluten, I often don't see them. In fact, we describe the damaged intestine as `flat.'"

Researchers estimate that 750,000 Americans have celiac disease, but that number could be much higher since the condition is so often misdiagnosed. Doctors are taught in medical school that celiac disease is a rare childhood condition that mainly affects Irish people, so they don't look for it. And because some symptoms of celiac disease (anemia, diarrhea, fatigue, weight loss, depression) are fairly common and often masquerade as other conditions (lactose intolerance, irritable bowel syndrome, chronic fatigue syndrome, food allergies), it can take a long time to get a definitive diagnosis. Doctors frequently dismiss patient complaints as psychosomatic.

Slowly, awareness about celiac disease is growing. We now know that it can afflict anyone though it seems more common in those with osteoporosis and insulin-dependent diabetes. Children usually develop celiac symptoms after cereal is introduced into their diet. Doctors aren't sure why adults who've eaten gluten all their lives suddenly develop the disorder, but researchers are exploring possible links to pregnancy, viruses, emotional distress or surgery.

A diagnosis of celiac disease can be confirmed by blood tests that screen for gluten antibodies, and by a small bowel endoscopy, a procedure in which a long flexible tube enclosing a fiber optic instrument is inserted through the mouth into the small intestine. This allows the physician to examine the lining of the intestine and then remove samples for examination under a microscope.

Once diagnosed, celiac disease is simply remedied by removing gluten from the diet and restoring depleted nutrients, such as iron, calcium, folate and vitamin D. Without the irritation from gluten, the intestine can repair itself and the individual is able to heal. "Usually there aren't any other problems when a gluten-free diet is rigorously followed," says Joseph Murray, M.D., a gastroenterologist at the Mayo Clinic in Rochester, Minn. "It's also important to correct any nutrient deficiencies with adequate supplements, and once they are restored, to maintain levels with a regular multivitamin.

Eliminating gluten is a challenge since so many American foods are made from wheat. But giving up gluten doesn't mean swearing off all grains. Rice and corn are great substitutes for wheat. You can also find ready, made gluten-free foods including pasta, baked goods and even bread in natural food stores and you can order them by mail. These products are generally made with flours from tapioca, soy, potato, bean, nut, amaranth, quinoa and buckwheat, which, despite its name, is actually a fruit, not a grain.

Gluten often hides out in unexpected places, like soy sauce, licorice and many processed foods. Avoiding it altogether means reading labels conscientiously and calling the manufacturer if an item contains ingredients that you're not familiar with (most have an 800 number). The same holds true in the drugstore, since over-the-counter and prescription drugs can also contain fillers made with gluten. In restaurants, staying gluten-free often involves quizzing servers or the chef about how dishes are prepared. And at home, it means preventing any trace of gluten-containing food from getting into gluten-free food by using separate toasters, containers and utensils.

WHAT'S LEFT TO EAT?

Essentially, anything that doesn't contain gluten is safe. "Most gluten-free vegetarians combine legumes, rice and the allowed grains to correctly get complete protein," says Cynthia Kupper, a certified registered dietitian in Seattle. "For these people, tofu is an excellent protein source. It's very adaptable and can be used in a variety of ways. However, not all tofu is gluten-free, so check the label for added gluten-based ingredients. Supplements are important too. Grains are a rich source of B vitamins, and because celiacs aren't eating a wide variety of them, they need to supplement daily with a B-complex vitamin. I also recommend iron and calcium supplements, since these are commonly malabsorbed by celiacs."

HEALING AIDS

Beyond switching to a gluten-free diet, there are several things celiacs can do to feel better faster. Before a conclusive diagnosis is made, exercise probably seems o impossible because of weakness and fatigue. But gradually building up to a normal workout program will speed the recovery process. Since weight-bearing exercise helps to create and preserve bone mass, activities like biking, walking and strength-training with weights are particularly important to prevent further bone erosion.

Yoga is also helpful. On my path to healing, I became a yoga devotee. This mind/body technique is effective in managing a chronic illness, especially in the early stages when adjustment (particularly to a new diet) can seem difficult. Yoga was something I could do no matter how I felt. "Yoga helps quiet the nervous system, the mind and the body," says Marsha Merson, a certified Kripalu yoga instructor. "It fosters flexibility and makes a person feel good all over."

And because yoga has many weight-bearing poses, it also strengthens bones. "Many postures involve pressing down on the floor and supporting your own weight. My arms are so defined now that people ask me if I lift weights." However, if you do have bone problems and you haven't done yoga before, check with a physician to make sure your bones can handle it.

No one reads about celiac disease without thinking she (or someone they know) has it too. If you fall into this category, get your blood tested. If you test positive for the gluten antibodies and an endoscopy proves you have the condition, there are many support groups (see "Resources") as well as informational newsletters and cookbooks you can turn to for advice and food ideas.

Beanburgers

MAKES 6 TO 8 OVO-LACTO (30)

This burger can be served as a patty or on a roll with your favorite condiments: mustard, mayonnaise, onion, tomato or avocado.

PLACE CARROT, broccoli, celery and onion in food processor and finely chop. Add garbanzo bean flour, 2 tablespoons oil, seasoning, egg substitute and salt if using. Pulse until ingredients form a smooth' batter. Heat oil in large skillet over medium heat. Drop batter by large spoonfuls to form 6 to 8 patties about 1/2 inch thick. Turn heat to medium and cook slowly about 4 minutes on each side. Serve warm.

Per burger: 183 cal.; 4g prot.; 7G total fat (1g sat. fat); 26g carb.; 0 chol.; 41mg sod.; 3g fiber

Reprinted with permission from The Gluten-Free Gourmet Cooks Fast and Healthy by Bette Hagman (Henry Holt and Company, 1996).

Label Lingo

Looking for the phrase "gluten-free' on a label isn't enough. You need to know some of gluten's aliases. Beyond the obvious (wheat germ, wheat starch), look for malt or malt flavorings, which may be derived from barley. Modified food starch may also contain gluten (however, if it just says "starch," then it's made from corn, and permissible). Watch for flavorings and colorings that may contain gluten, as well as the mention of plant or vegetable ingredients that don't specify what they're derived from. A good rule of thumb: If you see an ingredient that you don't recognize, call the manufacturer and ask.

Good Foods

Fruits, vegetables, beans, legumes, nuts, eggs, yogurt, cheese, milk, corn, rice, soy, tapioca, potato, arrowroot, bean or legume-based flours, as well as buckwheat, amaranth and quinoa.

Bad Foods

Any foods made with wheat (breads, cakes, cookies, crackers, pasta, pancakes, waffles, granola, pretzels, pizza) or rye, barley, oats, spelt, triticale, kamut, bulgar, malt, farina, semolina, einkorn. Always check labels on pack-aged goods to make sure that gluten was not added during the preparation.

Resources

Newsletters

Gluten-Free Living; $29 for one year; 549 for two years; sample issue, $6. Also available from the same company: 25 Ways to Eat Well and Stay Healthy on the Gtuten-Free Diet. a concise booklet that's especially good for those newly diagnosed ($2.95). Write to Gluten-Free Living, P.O. Box 105, Hastings-on-Hudson, NY 10706 (They also have info on support groups and will provide more details if you send a SASE.)

Books

* The Gluten-Free Gourmet (Henry Holt and Company, 1990); More from the Gluten-Free Gourmet (Henry Holt and Company, 1993) and The Gluten-Free Gourmet Cooks Fast and Healthy (Henry Holt and Company, Inc. 1995). all by Bette Hagman

* Against the Grain by Jax Peters Lowell (Henry Holt and Company, 1995).

* Wheat-Free Recipes and Menus ($19.95) and Special Diet Solutions: Healthy Cooking Without Wheat, Gluten, Dairy, Eggs, Yeast or Refined Sugar ($15.95, plus $3 per book shipping and handling). Both by Carol Fenster and available from Savory Palate, Inc., 8174 South Holly, Suite 404, Littleton, CO. 80122-4004.

Support Groups

To locate one near you, contact:

* Celiac Disease Foundation, 13251 Veto tufa Blvd., Studio City, CA 91604 (818) 990-2354.

* CSA/USA, P.O. Box 31700, Omaha, NE 58131 -0700 (402) 558--0600.

* Gluten Intolerance Group, 15110 10th Ave.,. SW, Ste. A, Seattle, WA 98165-1820 (206) 246-6652.

Ann Whelan is editor/publisher of Gluten-Free Living, a newsletter for people who have celiac disease.

COPYRIGHT 1999 Sabot Publishing
COPYRIGHT 2000 Gale Group