Giving Up Gluten
More than 1 million American women have celiac disease, a hard-to-detect digestive disorder associated with intolerances to wheat and other grains

By Julie Rothschild Levi

When Cindy Kaplan got married three years ago, she didn’t fret about the flower arrangements—she worried about making it through her special day without dashing off to the bathroom. Kaplan, 31, of Clarendon Hills, Illinois, had suffered from stomachaches, diarrhea, and constipation since age 8. Doctors had diagnosed her abdominal woes as a call for more attention as a child, and then as irritable bowel syndrome (IBS) when she was a young adult.

Desperate for relief, Kaplan turned to a holistic nutritionist who put her on a restricted diet; wheat was one food that had to go. She felt better, but other health problems arose. Her periods ceased, and blood tests revealed elevated liver enzymes—puzzling for someone who didn’t have hepatitis, drink much, or take acetaminophen. It wasn’t until age 29, when she began working for an allergen-free food company where she had contact with gastroenterologists, that the culprit of her health problems was revealed. “I wasn’t a medical mystery or a chronic hypochondriac after all,” Kaplan says. “I had celiac disease.”

Celiac Disease Foundation (CDF)
Studio City, California; 818.990.2354
Awareness programs, education, advocacy, research.

Celiac Sprue Association/USA Inc. (CSA)
Omaha, Nebraska; 877.272.4272
Regional support groups, newsletter, phone and online resources.

Gluten Intolerance Group (GIG)
Seattle, Washington; 206.246.6652
Starter patient packet, newsletter, kids’ camp, multilingual restaurant cards, advocacy.
CD and gluten-free diet information, plus a searchable database of more than 1,000 articles on CD, recipes, a message board, and a bookstore.

The Gluten-Free Gourmet
A cookbook series by Bette Hagman
(Henry Holt & Company)

Wheat-Free, Worry-Free
by Danna Korn (Hay House, 2002) Also known as celiac sprue or severe gluten intolerance, celiac disease (CD) is a genetically linked autoimmune disease in which the absorbing surface of the small intestine is damaged by gluten, the protein found in wheat, barley, and rye. With CD, nutrients pass through the injured small intestine unabsorbed, creating a host of sometimes devastating health problems.

A recent landmark study in the Archives of Internal Medicine (2003, vol. 163, no. 3) showed that CD, once thought to be rare, is a common inherited autoimmune disorder in the United States, striking 1 in 133 Americans. Slightly more women than men have the disease. In fact, it’s estimated that more than 1 million American women have celiac disease.

“If you take everyone with Crohn’s disease [an inflammatory bowel disease], everyone with ulcerative colitis, everyone with cystic fibrosis, and double it, that’s how many people have celiac disease,” says Cynthia Rudert, MD, an Atlanta-based gastroenterologist and CD expert. “And in my opinion, 90 percent plus have no clue they have it.”

Every celiac patient is different
Because celiac disease continues to be grossly underdiagnosed, it takes the average patient 11 long years to determine what’s wrong. Despite the bevy of recent research, most physicians still consider the disease rare, looking only for the “classic” presentation: chronic diarrhea, abdominal distention, and failure to thrive in babies and young children. Rudert seldom sees this profile in her practice, and most of her patients are adolescents and adults.

“Celiac disease is a chameleonlike disorder, making it easy to be missed and misdiagnosed, because it presents itself in such a variety of ways,” says Rudert. Nearly half of celiac patients suffer from gastrointestinal distress, including chronic or intermittent diarrhea, constipation, bloating, and cramps. The most common misdiagnosis is IBS; up to 20 percent of those diagnosed with IBS actually have CD.

Yet the other half do not experience any gastrointestinal upset (Gastroenterology, 2001, vol. 120, no. 3) and instead present with symptoms such as fatigue, weight loss, asthma, migraines, depression, and anemia. According to Rudert, as many as 10 percent to 15 percent of patients with “mystery” conditions such as fibromyalgia and chronic fatigue syndrome have CD.

Librarian Wendy Sagen-Moran, 49, of Hillsboro, Oregon, was shocked when she learned she had celiac disease two years ago. “I’d never heard of it before,” she recalls. After continually being rejected from her school’s blood drive because she was anemic, despite taking iron pills for several years, her physician referred her to a gastroenterologist who performed an intestinal biopsy that led to the surprising diagnosis.

Another wheat worry
Considered celiac disease’s (CD) “sister” condition, dermatitis herpetiformis (DH) is a skin disease marked by groups of watery, itchy blisters. Unlike CD, lesions appear on the skin, not in the small intestines. As with CD, gluten is the culprit, and a gluten-free diet is the only cure. Kaplan’s diagnosis also surprised her health care providers. Although the stomach problems she’d experienced were “typical” gastrointestinal symptoms for CD, her other symptoms (secondary amenorrhea—the absence of menstrual periods in a woman who previously had been regular—and, subsequently, infertility) were thought to be unrelated. However, according to the Archives of Internal Medicine study, 1 in 16 infertility patients has CD, and all people (men and women alike) with unknown fertility problems should be tested for it. Women with a history of miscarriages, stillbirths, fetal growth retardation, and premature menopause need to be screened as well. The good news, Rudert notes, is that most celiac patients’ reproductive capabilities return to normal once celiac disease is diagnosed and treated.

How it’s diagnosed
A blood test is the most common screening method for CD. According to a 2003 study in The Lancet (vol. 362, no. 9381), a complete celiac panel should include antigliadin antibody (IgG and IgA), tissue transglutaminase (tTG IgA), anti-endomysial antibody (EMA), and total serum IgA. Many major labs no longer test for EMA, claiming that tTG is the main determinant for celiac disease in serological testing (it’s also expensive to test for EMA). However, says Rudert, if EMA is not included, up to 20 percent of those with CD may be missed. If results do come back positive, the most accurate diagnosis tool is a small bowel biopsy.

Because CD is predominantly a hereditary condition, genetic testing may be beneficial for relatives of those with CD, even if they’re asymptomatic. In fact, 1 out of 22 first-degree relatives has it, as well as 1 out of 39 second-degree relatives. However, if any relatives do test positive for one or both genes, this does not mean they have celiac disease. It simply means they are carriers, and the disease may or may not manifest in their future.

“I think of it like a lock and a key,” says Rudert. “Your lock is your genetic tendency to develop CD.” Something needs to unlock the gene and trigger the disease, such as stress, surgery, overuse of antibiotics, an infection, overindulgence in gluten, or childbirth. What’s not known is how many triggers it takes to jumpstart CD.

It is not bad news to have CD. How many conditions are there where you can get a lot better with little or no medication? Rx: Gluten-free diet
The only medical treatment for CD is a gluten-free diet. “This is not bad news to have CD,” notes Rudert. “How many conditions can you have where you can get a lot better with little or no medication?” Once on the diet, some patients experience immediate relief; others take several months or years to heal. Strict adherence to the diet is crucial because it decreases the risk of developing other autoimmune diseases, such as type 1 diabetes, rheumatoid arthritis, and lupus. Gone untreated, CD also increases the risk of small intestinal and esophageal cancers, melanoma, and non-Hodgkin’s lymphoma (American Journal of Medicine, 2003, vol. 115, no. 3).

Shelley Case, RD, author of Gluten-Free Diet (Case Nutrition Consulting, 2003), says the diet compels people to “go back to the basics.” The first step is to identify sources of gluten and eliminate them. This can be tricky because gluten is often in unsuspected foods, such as soy sauce, canned soups, even licorice candies. And it’s often a hidden ingredient—in seasoned snack foods, for example. Currently, there are no regulations for labeling foods with potential allergens, although legislation has recently been introduced that would require listing of the top eight food allergens and develop use of the term gluten-free on food labels. If passed, this labeling would go into effect in 2006.

The initial celiac diet should be based on healthy, simple foods, such as meat and poultry, fish, eggs, nuts, legumes, fruits, vegetables, corn, and rice. Case recommends getting a few gluten-free cookbooks to help expand the diet, and consulting a dietitian specializing in CD for guidance in reading product labels and locating gluten-free foods, such as gluten-free bagels, pasta, and cookies. A wide variety of these foods available online and in markets makes it easier, and more enjoyable, for those on the diet to stick with it. The recently diagnosed Sagen-Moran relies on the support of national and local celiac groups, and especially her family and friends. “They know how sick I was and they want me to stay healthy,” she says.

It’s no piece of cake to pass by a bakery, Kaplan admits. But for her, the hardest part about having celiac disease was the years it took to get a proper diagnosis. “My only regret is that I didn’t know sooner,” she says. Now, as vice president of marketing at the allergen-free food company Enjoy Life Foods, Kaplan devotes much of her time to promoting CD awareness. “No one should suffer out of ignorance. No doughnut in the world is worth your health.”