Thanksgiving 1997 was a particularly difficult time for Floe Boston. Two weeks before the holiday she was diagnosed with celiac disease, an intolerance to certain proteins found in grains.
"I had been losing weight for several years," said Boston, 60, of Blairsville. "It got really bad in August of that year when I started experiencing fast weight loss, stomach bloating, leg cramps at night, and diarrhea."
In people with celiac disease, such symptoms are caused by an autoimmune reaction to gluten, said Rupam Sharan, a gastroenterologist with Westmoreland Gastroenterology Associates, in Greensburg.
Gluten is a generic term for the storage proteins found in grains such as wheat, barley, rye and oats. For people with CD, also called celiac sprue, eating gluten sets off an autoimmune response, and the small intestine loses its ability to absorb nutrients from food.
"You get inflammation of the small bowel and, over time, chronic changes to the bowel occur which lead to malabsorption of essential nutrients, including proteins and fats," Sharan said. "It can lead to a failure to thrive, weight loss, chronic diarrhea, abdominal pain, nausea and vomiting."
The disease also can have psychiatric and neurological manifestations, Sharan added, including depression, anxiety and lethargy.
So people with celiac disease must remove every bit of gluten from their diet. When they do, the intestine recovers and symptoms subside.
"The first few weeks after my diagnosis, I wondered what in the world I could eat," Boston said.
Many others face the same question. Between 2 million and 3 million Americans have celiac disease, although most do not know it.
The condition is found most often in people of North African and Irish descent, although it appears in all ethnic groups. More women are diagnosed than men, and symptoms may arise at any age.
Left untreated, celiac disease can lead to serious health consequences, including Type 1 diabetes, thyroid disease, autoimmune disorders such as lupus or rheumatoid arthritis, liver disease, infertility, and cancer.
According to the Celiac Disease Center at Columbia University in N.Y, only 3 percent of people with the disease are being treated, and most of those suffer an average of 11 years before the condition is correctly diagnosed.
A simple blood test for an antibody known as anti-tissue trans-glutaminase can determine if a patient's symptoms are linked to CD.
"The antibody has a very high positive predictable value, as much as 100 percent," Sharan said. "This means that if the antibody is positive, the patient either has latent CD or active CD, depending on the symptoms."
An upper endoscopy and biopsy of the small intestine can confirm changes in the lining of the bowel caused by the disease. Then a doctor or registered dietitian can help to guide their food choices.
Karen Wolff, 47, of Clymer, was diagnosed with celiac disease four-and-a-half years ago.
"I was lucky to have been diagnosed so quickly," the Indiana County woman said. "I've talked to others who were misdiagnosed for years. Being diagnosed, I believe, saved my life."
Her father, who was never diagnosed with celiac disease, died of colon cancer in 1990, when he was 59. Although the condition is genetic, neither Wolff's siblings nor her children have symptoms.
CD is not contagious, and it can't be treated with medication.
"The resolution of celiac disease is a complete withdrawal of all gluten-containing foods," Sharan said.
Gluten is found in breads, pastas, cookies and other grain products. It also is hidden in many processed foods, such as frozen French fries, and even in processed meats, such as hot dogs.
"Someone with a gluten intolerance must know what foods contain gluten," said Diane Coleman, a dietician at Excela Health Latrobe Hospital. "Gluten is often found in thickening agents, such as dextrin and vegetable or plant proteins."
It's important to read labels carefully, Coleman added.
"Labels that contain a complete list of ingredients are the safest," she said. "I always tell people if they are unsure of the ingredients, they should avoid (the food) or call the manufacturer to see if it contains gluten."
In addition to food products, Coleman said, some medications, vitamins and mineral supplements may contain gluten.
Boston, who enjoys cooking and baking, said going to the grocery store was difficult the first couple of weeks after her diagnosis.
"I felt like I was denying myself everything," she said. "I was always hungry and I would come out of the grocery store angry."
But then she said she "got a grip," and began talking with others and finding cookbooks geared to the gluten-free life.
"It isn't easy to live gluten-free, but it does become easier," said Boston. Now she enjoys baking treats such as gingersnaps and angel food cake using gluten-free ingredients.
Wolff, who works full time as an administrative assistant at Indiana University of Pennsylvania, said she doesn't have time to bake from scratch.
"I have to rely on manufacturers who make gluten-free foods, and reading labels carefully," she said.
Internet sites, such as the online bulletin board at www.glutenfreeforum.com, help celiac patients find support, as well as sources for "safe" food products.
Both Boston and Wolf find encouragement through the Gluten Support Group at Indiana Regional Medical Center. The group meets quarterly to sample foods, share recipes and listen to speakers and doctors discuss the latest information on celiac disease.
"These meetings give us an avenue to try some foods to see if we'll like them," Wolff said. "Gluten-free food is expensive, but I've been able to find bread, bagels, cereals and pastas that I like."
Taste itOn Dec. 4, the Gluten Support Group at Indiana Regional Medical Center will hold its final meeting of 2006 with a Christmas cookie exchange. Participants are to bring three dozen gluten-free cookies, plus one dozen for tasting. Everyone will go home with three dozen cookies in time for the holidays.
The meeting will be held in Private Dining Room No. 1 at the medical center, 835 Hospital Road, Indiana. The public is welcome.
For details, call Karen Wolff at 724-254-9862.
Clean out the cupboards
People with celiac disease should not eat foods that contain gluten, so savvy shoppers check product labels for these ingredients: barley products, bulgur, beer, cereal extract, cracker meal, durum, eikorn, emmer, kamut, matzoh, rye products, wheat products and modified food starches. Seasonings and flavorings, such as caramel color, also may be sources of 'hidden' gluten.
Some grocery chains, including Giant Eagle, offer a pamphlet or other listing of gluten-free foods.
Online resources include the American Celiac Society, the National Institutes of Health, the Celiac Sprue Association and the Celiac Disease Center at Columbia University in New York.
Source: Dietitian Diane Coleman, Excela Health Latrobe Hospital
Book Among the resources for people who suspect they may have food intolerance is 'The Gluten Connection,' a new book by clinical nutritionist Shari Lieberman (Rodale Press, $16.95). The paperback explains gluten sensitivity and its effects on health, and discusses how to live a gluten-free lifestyle. Recipes are included, along with information about dining out and talking to others, including doctors, about the condition. The book is available at bookstores, online at rodalestore.com , or by phone at 800-848-4735.
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