Living with celiac disease

Living with celiac disease

“Ouch, mom, my stomach hurts,” became a constant refrain in the McKenna household coming from the mouths of 13-year-old Laura McKenna and her older sister, Kelly.

Kelly, 16, suddenly became ill, suffering from symptoms such as anemia, fatigue and bloating that lasted for six weeks from eating Cream of Wheat hot cereal. She was taken to the doctor, and because her symptoms were very common to other illnesses, it was hard to diagnose her. After her mom read information on celiac disease and its symptoms, which include diarrhea or constipation, stomach upset and anemia, her mom asked doctors to test for it.

Because celiac disease is a genetic disease the entire family was tested for it. Both Laura and her sister tested positive. According to Dr. Esperanza Garcia-Alvarez, pediatric gastroenterologist at Advocate Children’s Hospital’s Pediatric Celiac Center in Park Ridge, Ill., “Celiac disease is underdiagnosed. It is estimated that one out of one-hundred-thirty-three people have celiac disease, most of who do not know they have it.”

“Celiac disease is an autoimmune disorder of the small intestine,” explains Dr. Garcia-Alvarez. “Foods that contain gluten trigger an autoimmune response that damages the small intestine, and food is not properly absorbed. Other autoimmune diseases can be triggered by continuing to eat gluten.” Foods that contain gluten are grains such as wheat, barley and rye.

When Laura was initially diagnosed 10 years ago, there were not a lot of gluten-free options.  All Laura had to choose from was, “rice with almost everything, ordering meals offline and meals from the one gluten-free cook book,” she says.

Going to school was a struggle for Laura, as she had to explain to teachers what she could and could not eat. Packing the same gluten-free lunch of hot dogs with no bun, chips and Snickers became exhausting. When those options became too familiar, she would microwave gluten-free macaroni and cheese, and that was only due to the separate microwave the school allowed her to use. After changing to a gluten-free only diet, which is the only treatment for celiac disease, almost immediately she began to gain a normal weight and even grew 3 inches in height.

Ten years later, as a recent college graduate and active competitive world class sailor, Laura still has to follow a gluten-free diet. However, she no longer feels like an outsider. “Restaurants and grocery stores have so many gluten-free options these days. People know what I mean and understand me when I ask, ‘What are the gluten-free options?’” she says.

Join Dr. Garcia-Alvarez on Friday, November 15 at 11:30 a.m. for AdvocateLive, where she will answer your questions live about celiac disease. Click here to submit your questions now.

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  1. This is great seeing all these articles and blogs on Celiac Disease and the gluten-free diet. I have been a diagnosed Celiac for 15 yrs and things have changed so much. I am glad Advocate is getting on board becoming visible as a supporter for Celiac Disease. By talking to fellow Celiacs I was very lucky when I was first diagnosed. The dietician I was sent to was at Christ Hospital and she knew all about Celiac Disease. I still remember her telling me she has 45 minutes to change the rest of my life! Wow…was that ever true. I hope people take the time to join AdvocateLive or listen to it later just to hear what it is all about. It is just not eating gluten. It’s not licking an envelope, taking a medication with a gluten filler, wearing a lip gloss or lipstick with gluten in it. Even living in a household with members that are not Celiacs….you can’t share a toaster or a pasta strainer. Oh…..the kitchen sponge! Anywhere those gluten crumbs can get into. I always say…Knowledge is Power.

  2. Having celiac disease can be stressful at first. I did a lot of research at first and discovered that it could be simple. Fruits , Vegetables and Meat if you like. Stay away from processed foods and buy items that have the shortest ingredient list. Use your head, look for natural ingredients, look out for artificial ingredients and preservatives. The basic food/ nutrition pyramid.

    It is much easier to find Gluten Free foods now, but I think it leads people with Celiac disease down the road to poor nutrition by eating more processed foods, all of the things we miss after having been diagnosed. When it comes down to it, the breads, pizza and other baked goods really aren’t good for us or any one else. They taste good though.

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health enews Staff
health enews Staff

health enews staff is a group of experienced writers from our Advocate Health Care and Aurora Health Care sites, which also includes freelance or intern writers.