Glasgow Daily Times, Glasgow, KY


May 24, 2011

Learning to live with Celiac

GLASGOW — Becky Gray can’t eat Twizzlers, popcorn chicken, store-bought bread or many other everyday food items. She can’t even eat a piece of fruit that touched a piece of bread.

Becky was diagnosed with Celiac disease when she was 7 years old. She had been sick often throughout her early life due to a malformed wind pipe, so it took several years and several doctors to finally diagnose why Becky had so many stomach problems. When the correct diagnosis finally came, Becky and her parents didn’t quite know what to do.

“We had never heard of it at that time,” said Becky’s mother, Tina Gray.

It was scary to hear such an unknown diagnosis, Becky and Tina Gray said. One of Becky’s doctors faxed Tina Gray a four-page list of what Becky could no longer eat, along with a half-page list of what she could eat. Becky’s family didn’t know where to start.

“I was scared …” said Becky, now almost 11. “When Mom first started packing my lunch, I thought all I was ever going to eat were fruits and veggies.”

Celiac disease is a genetic intolerance to gluten. When someone with Celiac disease consumes gluten, their immune system reacts by damaging the lining of the small intestine, which prevents the body from properly absorbing nutrients. It’s an auto-immune disease, not an allergy, so having Celiac disease means a person has an over-active immune system and it often comes hand-in-hand with other auto-immune diseases, such as diabetes, Crohn’s disease and rheumatoid arthritis. Becky lives with stomach problems, frequent headaches and chronic joint pain. She also tested positive for Crohn’s disease. There is no medication for Celiac disease. A person can only treat themselves by sticking to a gluten-free diet.

“I never read a label until my daughter got sick,” Tina Gray said, “so when they told us we had to start reading labels it was a big change.”

Becky said her disease is difficult at school, when she always has to pack her lunch and be careful that no one else’s food contaminates her own. She can’t eat cupcakes for a classmate’s birthday or blithely eat a supplied lunch on a field trip.

“It’s really hard to stay on the diet, but I have to,” Becky said. “Sometimes I want to eat what (my friends are) eating, but I can’t.”

In the last year or so, Tina Gray said it has become easier to find gluten-free items in regular grocery stores and Walmart. More brands are making a gluten-free version of their regular products, so Becky has a wider variety of food to choose from. It’s still hard, Becky said, but it has gotten better. Tina Gray said they never go out to eat, because she feels safer when she fixes Becky’s food. Every time the family goes on a trip, they have to pack enough gluten-free food for Becky, just to make sure it’s available.

“It’s like we’re moving every time we go somewhere,” Tina Gray said with a laugh.

Becky’s father, Greg Gray, pointed out that just reading food labels is not enough.

“The problem is, it’s not only in food,” Greg Gray said.

Gluten can also be found in make-up, toothpaste, prescription drugs and lip balm. Becky discovered the hard way that touching gluten products gives her a rash when she played with Play Doh as a child. Play Doh left her hands red and raw, she said. Gluten in non-food products is something that many people never think about.

The biggest problem with living with Celiac disease or finding a diagnosis for Celiac disease is a general lack of education, both in the public and with doctors, said Elaine Wilson, a registered nurse who runs the Pulaski County Celiac Disease Support Group, which the Grays attend. Wilson was diagnosed with Celiac disease in 2006, and even though she had been a nurse for 15 years at the time, she had only vaguely heard about the disease in nursing school. Being sick had been part of Wilson’s daily life for so long that she thought she’d never find out what was wrong with her.

“They just weren’t testing for it,” Wilson said. “They didn’t know anything about it.”

Wilson was one of many Celiac patients who was sent to a psychiatrist, because her doctor thought the problems must be in her head. The Grays also had difficulty finding a diagnosis, and when Becky’s pediatrician finally diagnosed Celiac disease, it was the first time she had ever given anyone that diagnosis.

“Becca was her first case,” Greg Gray said. “So she didn’t know what she was doing.”

While Tina Gray said she is happy with Becky’s current care, they have switched doctors several times since Becky was diagnosed. The lack of knowledge among the doctors is frustrating, but Tina Gray said she doesn’t hold it against them. She is thankful Becky was diagnosed at such a young age, since it is estimated 97 percent of people with Celiac disease don’t know they have it.

“I wish that they knew more, but I think we get good care,” Tina Gray said.

Living with Celiac disease is a daily challenge, but the Grays are thankful for their support group, and they said they want more people to know what Celiac disease is, so more people can be properly diagnosed. It is estimated that one out of 133 people have the disease. It is difficult to live with, but Becky said being diagnosed and eating gluten-free is much better than being sick every day.

“You have to watch everything and you have to be very careful,” Tina Gray said. “I’m no expert, but we just do the best we can.”

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