“I don’t care, I don’t care,” freshman Rebecca Burke* thinks to herself when students bully her. Burke was diagnosed with celiac disease, a condition that prevents her from eating wheat, when she was 14 months old. The disease not only affected what she could eat, but also changed how classmates treated her when they found out.
“Some people thought I was faking having the disease and threw bread and anything with wheat in it at me,” Burke said. “One time my ‘best friend’ invited me to her house for a sleepover. She thought I was lying about the wheat and decided to force me to help her make wheat cookies without gloves. I got sick and she just laughed at me.”
“When I was being bullied I stopped caring about anything and I still don’t. I hide my feelings until I can’t hide them anymore. It makes some people think I don’t have any feelings,” said Burke. “I stopped making friends because the ones I had weren’t my friends at all.”
Celiac disease is caused by an abnormality in the immune system’s reaction to gluten, which leads to damage of the small intestine’s lining. Gluten damages the villi, hair-like projections that are responsible for absorbing nutrients from digested food. When left untreated, the villi may become partially, or even completely flattened, and unable to do its job. When this happens, the body is deprived of basic nutrients, and the person may become malnourished and dehydrated.
According to “Kids with Celiac Disease: A family guide to raising happy, healthy, gluten-free children” by Danna Korn, common symptoms for celiac disease are: diarrhea, excessive dependence, lack of muscle definition, irritability, and more. Individuals exhibiting celiac symptoms show signs between one to four years, and in the 50s. Burke was diagnosed when she was 14 months old.
“She started vomiting about four to five hours after she was born and never really stopped. She would vomit seven to eight times a day. She would show that her stomach hurt,” Tim Burke, Rebecca’s father, said. “The doctors had no idea what was going on. They thought we were overfeeding her, not feeding her enough, or were just overprotective parents.”
Celiac disease is estimated to occur in 1 in every 150 people, and, according to Korn, still remains one of the most under-diagnosed diseases because physicians are unaware that celiac disease can be present with other symptoms and can first appear in adolescence or in adulthood.
“After constantly being at the general doctor’s we finally got referred to a Gastroenterologist that was initially confused but tested her for celiac disease as a long shot,” Tim Burke said. “After a blood test and a endoscopy, that’s what it came back as. The diagnosis came after not only a blood test but an endoscopy of her small intestine.”
Being diagnosed with celiac disease didn’t only affect Rebecca, but her family as well.
“It was very difficult for us when she was first diagnosed,” Jill Burke, Rebecca’s mother, said. “We had to redo our kitchen. We have two sets of pots and pans on separate sides of the kitchen, so we don’t cross contaminate anything. I had to learn how to cook again and her food is very expensive, so it was a matter of affording it. A loaf of her bread is $8 here, if we can’t get it at the commissary. I also had to realize that my daughter is going to be different her entire life. It is a feeling of mourning. She was so sick that we didn’t know if she would live past the age of three. There was a lot to absorb.”
Gluten is found in grains and baked goods such as, bread, scones and cakes, but it is also found in play dough, latex or rubber gloves, paints, clay, glue, and more.
“She didn’t react completely as expected at first, mostly because we were still learning the diet,” Tim Burke said. “I mean who knew that modified food starch contained wheat, or that red #40 contains wheat. She still has problems due to mistakes or people not listening to her.”
Section 504 of the Rehabilitation Act of 1973 is a law that prohibits the discrimination on the basis of disability in any program or activity receiving federal funds, like public schools. Therefore, the law ensures that students with disabilities receive equal access to a public education. The law also extends to any private school receiving public funding. For children with celiac disease, Korn stated, the main protection of this law is to prohibit discrimination when eating in a public school cafeteria. Under the National School Lunch Act (NSLA), public schools must provide special diets for students on an Individualized Education Program. A physician’s statement of need is required to obtain the special diet.
“In middle school her teachers were really unwilling to cooperate,” Jill Burke said. “They insisted on having parties in the class and wouldn’t not follow her 504 plan [a way of making sure that the teachers and other staff understand the ramifications of a child’s medical condition or disability and the need to help the child with special challenges and protect the child from risks]. Even the principal gave her problems because of this reason. We had to ask the school district for help because her middle school refused to take her. The Student Services Coordinator really worked hard to get them to understand that there is no wheat allowed in her classes, but they didn’t listen. We even had to remove her from one of her electives because the teacher wouldn’t listen and kept getting her sick.”
If left untreated, celiac disease can cause long-term, and sometimes life-threatening conditions, Korn stated. When someone with celiac disease continues to eat products with wheat in it, absorption of certain nutrients, like iron, calcium, and folic acid, are prevented, even when supplements are taken.
“Recently I accidently had some wheat and it’s sometimes painful on my body,” Burke said. “Other times I’m tired, sore, have headaches, and irritable. As a teenager, because I have more independence I’m responsible for what I eat, but I have no control over my body once I’m exposed to wheat. When teachers refuse to cooperate I fight as hard as I can to get help and I get my mom to talk to them. They never understand the risk. I have a 90 percent chance to get cancer if I keep getting exposed to wheat. ”
Burke is scheduled to undergo surgery on Sept. 14. This will be her eighth surgery since being diagnosed.
“I’m not worried about my surgery,” Burke said, “because I’ve had seven already. And, I’m not expecting anything to happen either. I really don’t know any other lifestyle.”
* Name of Student Changed