By: Shelly Robinson | Category: Other | Issue: April 2010
Lori Wilbins, her daughter Abby and Amy Reed appreciate the efforts of the Tulsa Support Group of the Celiac Sprue Association.
Look around at a youth sports event and you’re likely to find the treats after the game are as important as the final score. Imagine watching your teammates celebrate but not being able to join in because the ingredients in the snacks can make you extremely ill. Such is the scenario for children with Celiac disease.
Many have heard of Celiac disease but aren’t sure what it is. CD is a genetically linked disease that can lay dormant until an environmental, emotional or physical trigger causes the immune system to have an inappropriate response. For people with CD, eating the protein fraction commonly known as gluten sets off an autoimmune response that damages the small intestine and can cause malnutrition and a variety of other complications. The offending protein, gluten, is found in wheat, barley, rye and oat products.
Abby Wilbins of Owasso is 11 and has been dealing with CD for over three years. She shared that many of her friends don’t understand the disease, and it can be frustrating at times. “I have to say no to snacks and foods that would make me sick,” says Abby. “My friends want to know why I said no, and I have to explain the whole thing over and over. I would love to eat it, but I just can’t.” She handles the disease well however, taking her own snacks and foods when she attends church and social events, and being careful to ask about ingredients when eating away from home.
Her mother, Lori, was the first of four in the family to be diagnosed with CD. During a trip to Chicago, Lori almost passed out on a train platform and had to be rushed to a hospital. “I thought I was having a heart attack; everything just went black. I was severely anemic and was given two pints of blood to get my iron up. I had been having symptoms that resembled MS for years and had almost convinced myself that was the problem.” Lori said she was blessed to be taken to a hospital that conducts Celiac research, where her symptoms were quickly recognized.
Ronda Falkensten, mother of three children with Celiac disease, leads meetings of the Tulsa Support Group of the Celiac Sprue Association.
Soon after Lori’s diagnosis, the family realized that Abby’s ongoing stomach problems, low blood sugar and failure to thrive pointed to her problem as well. Abby is now healthy and thriving on a gluten-free diet. “I wore a kid’s size 6X for almost three years, so I’m definitely glad to be growing again.”
The symptoms of CD are so numerous, and so varied, that many patients suffer for years before it is diagnosed. Finding out that you or a family member has CD brings mixed emotions. Many are so ill by the time they find the cause, they are both relieved and overwhelmed.
Amy Reed of Owasso went through over two years of serious illness before her CD was properly diagnosed. “I was debilitated by severe exhaustion, extremely anemic and was seeing an oncologist monthly for over a year and a half because I thought I might have cancer,” Amy says. “I had numerous tests and received two iron transfusions. It was a very frightening time.” Amy’s doctor attended a CD seminar and immediately called her. “She said to me, ‘I think I know what you have, and I want you in the office tomorrow,’” Amy shares. “It was such a relief to find out what was wrong, and then the real work started.”
Amy turned to the Tulsa Support Group of the Celiac Sprue Association for help. The local support group is led by Ronda Falkensten, who herself has a husband and three children with Celiac. The group meets every other month to share the latest Celiac information, including educational and medical resources, new gluten-free products, recipes for gluten-free foods, restaurants and stores who offer Celiac dishes, and ideas for daily living with Celiac. The next meeting will be Tuesday, April 20 at 7 p.m. at the St. Francis Hospital Education Resource Center.
Ronda says advancements are being made all the time. In fact, this year Camp Fire USA is running a resident summer camp for Celiac kids and their siblings. Seasoned camp cooks will prepare only gluten-free foods, so the kids can concentrate on fun. Information can be obtained by visiting the Camp Fire website, www.tulsacampfire.org or by calling (918) 592-2267.