Gut Reactions

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When bread, pasta and even ketchup cause nothing but trouble

For as long as she could remember, Liesa Abrams had suffered from a delicate stomach. But when the New York City book editor got violently ill after eating a frozen pizza one February night 4 years ago, she knew she was dealing with no mere bellyache. "I got terrible stomach cramps and basically spent the whole night on the toilet," recalls the 20-something vegetarian. "The next morning, I kept waiting to feel better, but I never did--not for a long time."

Meals became ordeals. Within 20 minutes of downing so much as a measly muffin, Abrams was hit with intense abdominal pains and bouts of diarrhea so predictable she made sure to eat only within striking distance of a bathroom.

Abrams' gastroenterologist had chalked up her earlier episodes of stomach upset to the stress of an editor's demanding job. But when a desperate Abrams showed up in his clinic near the end of March 2000, the physician decided, on a whim, to run blood tests for a little-known, inherited condition called celiac disease, also known as celiac sprue or gluten-sensitive enteropathy. The disease has been considered so rare and so specific to children that Abrams' doctor was almost certain that his patient didn't have it.

A few days later, the physician left the test results on Abrams' answering machine: "This is so strange. You've tested positive! I can't believe it!"

A Dire Disease
Celiac disease is a form of gluten intolerance--an inability to digest gluten, which is a "gluey" protein that gives cohesiveness to the dough of breads, pasta and other foods that contain wheat, rye or barley. Lesser-known grains such as spelt, kamut and triticale also contain gluten.

But celiac disease carries much more dire consequences than the inability to eat bagels. "Simple intolerance produces passing gastrointestinal symptoms such as diarrhea and sometimes vomiting, but with no lasting [ill] health effects," says Michelle Pietzak, MD, a pediatric gastroenterologist at Childrens Hospital Los Angeles. Although celiac disease often causes gastrointestinal upset, too, celiac is "an autoimmune disorder, like type I diabetes, so it puts people at a lifetime risk for a range of serious illnesses including anemia, osteoporosis, even cancer."

Celiac can increase a person's risk for these illnesses, says Pietzak, because the immune system reacts against gluten in the intestines, eventually damaging the wall of the small intestine so that it can't fully absorb the vitamins and other nutrients vital to good health. Gluten can even affect the brain, causing depression, seizures, schizophrenia and other neurologic and psychiatric problems.

Doctors often make an inaccurate diagnosis because they've been taught to regard celiac disease as a rare childhood condition that produces only gastrointestinal symptoms. But as a recent survey published in the February 10, 2003 issue of the Archives of Internal Medicine shows, celiac disease is neither confined to children nor distinguished only by stomach upset alone. Signs of celiac disease include constant fatigue, bone or joint pain, frequent fractures and weight loss. "In healthy populations, we found that celiac disease may affect as many as 1 of every 132 Americans. In families with a history of the disease, the prevalence is as high as 1 in every 22 [people]," says Pietzak, the study's co-author.

The Gold Standard of Diagnosis
The initial screening for celiac disease is a series of blood tests known as the Celiac Blood Panel. A positive test shows high levels for three gluten antibodies: antigliadin IgG and IgA (AGA), anti-endomysial IgA (EMA) and anti-tissue transglutaminase IgA (tTG) antibodies.

Those same tests offered Selena Eon, a 26-year-old naturopathic medical student from Seattle, an answer to what lurked behind the stomach pain that had plagued her for the better part of a decade. By the end of 1999, Eon was so sick that she would lie on the floor, hold her stomach, cry in pain and then run to the bathroom after she ate anything. Physical exams and standard blood tests turned up nothing. Eventually, her father--a naturopathic doctor--ordered a comprehensive GI panel, which included tests for celiac disease, through a private clinic.

The results convinced Eon she had celiac disease. Celiac specialists, however, recommend following up positive blood tests with a biopsy of the lining of the small intestine to check for damage to the intestinal wall. The final piece of the gold standard of diagnosis was Eons return to good health after she followed the only known treatment for the disease: eliminating all gluten from her diet.

"Gluten isn't an essential nutrient, so you can live safely without it," says Pietzak. Untreated celiac disease does take a toll on a body, so Pietzak recommends that the newly diagnosed also be tested for vitamin and iron deficiencies and osteoporosis.

Wonderful Diagnosis?
Doctors often call celiac a "wonderful diagnosis" because the disease is controlled by diet alone. Patients show a lot less enthusiasm. "At first, I cried whenever I started thinking about the pizzas I'd never eat again, the poppy seed muffins. It was like losing a love," admits Abrams.

Even home cooking, people with celiac have found, requires vigilance. Eon is so sensitive to gluten that, before making a meal, she has to wipe down the kitchen counter after her wheat-eating husband and son have been cooking.

It took Eon a good year before she came to terms with her condition. "At first I laid in bed and cried a lot," she recalls. "Then one day I decided to get over it and find all the foods I could eat--and then learn how to be a good cook."

The pickings, Eon found, were more plentiful than she'd imagined. "In the past few years, there's been an explosion in the number of foods, cookbooks and resources available to people with celiac disease," says Carol Fenster, PhD, author of Gluten-Free 101 and president of Savory Palate, a Colorado-based company that publishes books on food intolerance and counsels gluten-free patients.

Most health food stores and a growing number of mainstream supermarkets stock gluten-free "wheat" staples: breads made from rice flours, corn and potato starch; pasta pressed from rice, tapioca and soy; rice breakfast Os. These stores may also carry millet and other exotic grains such as quinoa, amaranth and teff, which can fill in for wheaty foods and offer a higher number of nutrients.

Abrams primarily cooks meals with the gluten-free standards of the vegetarian's diet: fruits, vegetables and legumes. A current favorite: spinach, chickpeas and tomato sauce served over rice pasta. For comfort food, it's still pizza she longs for--and pursues. "There's a restaurant out on Long Island that makes a gluten-free pizza, and I have no problem driving out there when the urge hits."

Choices Abound
Fortunately for people who must avoid gluten, a wealth of gluten-free choices exists at natural food stores. Try some of the following:

• Bob's Red Mill Almond Meal/Flour. 800.349.2173; www.bobsredrnnill.com

• Enjoy Life Foods Bagels. 888.50.ENJOY; www.enjoylife-foods.com

• Nu-World Foods Amaranth Cereal Snaps. 630.369.6819; www.nuworldfoods.com

• Organic Gourmet Vegetable Soup 'N Stock. 800.400.7772; www.organic-gourmet.com

Resources
These Web sites offer information to aid people in adjusting to a gluten-free lifestyle.

www.celiac.org

www.csaceliacs.org

www.gluten.net

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By Mark Harris

Where's the Gluten?
Manufacturers aren't required to list gluten on their food labels, although legislation being considered in the US Congress would change that. Until then, beware the gluten that may be lurking in these common foodstuffs:

Beer
Bouillon cubes
Chocolate milk
Communion wafers
Cream soups
Croutons
Dried fruits
Egg substitutes
Instant coffee,
flavored varieties
including Postum
Ketchup
Licorice
Mustard powder
Ovaltine
Roux
Sauces
Soy sauce

Gluten can also masquerade under a variety of
ingredient names, such as the following:

Acacia
Annatto coloring
Caramel coloring
Cellulose gum
Garlic salt
Malt vinegar
Monosodium
glutamate
Natural flavors
Onion salt
Tomato paste
Vegetable broth

--Source: Gluten-Free 101 by Carol Fenster, PhD
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