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Lifestyle changes make living with celiac disease easier

Friday, May 21, 2010
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Sandy Moody hopes to form a support group for people with celiac disease and share information on topics of interested including what prepared foods are gluten free.
Sandy Moody hopes to form a support group for people with celiac disease and share information on topics of interested including what prepared foods are gluten free.

Ten months ago, when Sandy Moody was first diagnosed with celiac disease at the age of 65, she felt overwhelmed. “I didn’t have a clue. I didn’t know what it was or what to do,” the Saratoga Springs resident said.

Fortunately, Moody is inquisitive by nature and began researching this genetic disease which affects approximately 1 in 130 Americans. She has searched the Internet, contacted support groups and read dozens of books on the subject.

She discovered people with CD cannot tolerate gluten, which is found in wheat, barley, rye and often oats. The gluten proteins set off an autoimmune response damaging the small intestine and preventing the absorption of nutrients from food.

People with CD have varying symptoms, and as Moody delved deeper she realized that she has had this disease her entire life. “Growing up, I had stomach aches and depression. People would tell me it was all in my head. They didn’t know back then about celiac. I spent a lot of years with depression, anxiety and persistent migraines,” she said, noting that these are all symptoms of the disease.

Part of the difficulty in diagnosing CD is that person-to-person the symptoms can vary widely with some people never experiencing symptoms. Others experience abdominal cramping and bloating, anemia, constipation or diarrhea, fatigue, mouth sores, cracked lips, pain in bones and joints and very dry skin. The emotional symptoms includes depression, irritability, mood changes and an inability to concentrate. In children there may be growth failure, projectile vomiting, crankiness and difficulty concentrating.

According to the Celiac Sprue Association, diagnosis can be made through a blood test and a biopsy of the small intestine. But as Moody found out, doctors don’t often think to test for the disease. Moody’s condition went undetected for decades. Last year, she underwent allergy testing and an MRI — both of which showed nothing. It was only after a blood test that her doctor found the problem.

Some people don’t want a diagnosis. In Moody’s family at least two relatives have CD. “Probably others too, but they don’t want to know because they don’t want to deal with it,” she said. The danger is CD can lead to other problems, she added.

Dealing with the CD means eliminating all gluten from the diet. There is no cure, but people with CD can reverse the damage done to the small intestine and begin to absorb food properly by following a gluten-free diet, Moody said.

Adhering to a strict gluten-free lifestyle, however, is life changing, Moody said. She feels like a “big chunk of joy was taken out of life.” She no longer can go out to dinner at the home of friends or to restaurants without checking that they have gluten-free meals.

“And even if they have gluten-free meals, there is still the fear of cross-contamination” which can set her back to square one, she said.

She said the holidays are a different experience for her now. “This disease has a strong emotional component,” she said. “The holidays are not the same. I have to bring my own food. Our society revolves around food. Food is comfort and I lost that,” she said.

Gluten, which is used as a binder, is in many products as well — everything from cosmetics, to ice cream to ketchup. For the CD patient, inadvertently ingesting gluten causes immediate discomfort and intestinal damage. “I have become a label reader. I spend hours in the supermarket reading labels. You have to be very careful with processed foods,” she said, as they often contain hidden gluten. For example, hydrolyzed vegetable protein and modified food starch often contain gluten.

Although she finds living without grains challenging, Moody is cooking and baking more and finding better substitutes for the baked goods she craves. In recent years, many mainstream companies — such as Betty Crocker — have begun to make gluten-free products which are available in area supermarkets. The problem, Moody said, is the expense. “My food bills have tripled. A loaf of bread can cost $6 to $8,” she said, adding that many of these loaves “taste like cardboard” with an unappetizing texture.

Her sensitivity to gluten is so intense that Moody found handling her cat’s food difficult. Her cat now also eats gluten-free.

“Something as small as a bread crumb” can trigger her illness, she said. As a result, Moody has made a practice of contacting major food companies requesting information on their products. Through her researching, she has found many gluten-free products including tomato sauces, baking mixes, cereals, condiments and frozen dinners. These have helped her enormously, she said.

Looking to share what she has learned, Moody created a Web site (celiacdiseasenetwork.com) to offer support to others. “Two things you need after you are diagnosed with celiac are a good dietician and a good support group,” she said.

While there are existing support groups for celiac patients at Glens Falls Hospital and St. Peter’s Hospital, Moody is hoping to form a local support group. If you are interested, you can contact her through her website or by calling 587-2794.

 
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