West Bloomfield mother finds answers after years of misdiagnoses

WEST BLOOMFIELD, Mich. – For years, a West Bloomfield mother suffered from a mystery illness -- she knew something was wrong, but she couldn't figure it out.

"The pain is on a scale from 1-10, I would put it at an eight or a nine," Andi Parel said.

After years of misdiagnosis after another, she finally has an answer.

The busy working mom struggled everyday at work and at home.  Her doctors were also baffled.

"Originally, when I was tested, I had a series of procedures done," Parel said. "And he didn't think it was celiac. He thought it was something else, maybe like a case of Crohns."

The doctor was shocked when the tests came back positive for celiac.

"You know, he really didn't think that was it," Parel said. "When I went back in for a series of blood work, he called be back, maybe a week later, and said 'Clear as day -- you absolutely have celiac disease.'"

After years of misdiagnosis after another, she finally had an answer. 

Some people can live with celiac disease for years and not know about it. Some with the disease don't show symptoms until later in life. Parel believes that she was showing slight symptoms when she was younger, if she had any reactions at all.

"Looking back, it's hereditary. My grandmother was never diagnosed, but I'm pretty certain she had it," Parel said. "She had digestive issues her entire life. So, again, back then we didn't know enough to ask those questions and to educate ourselves."

With the help of registered dietitian Julie Feldman and her doctors, Parel immediately changed her diet and cut out all gluten.

"Celiac Disease is an autoimmune disease where when someone consumes gluten -- which is the protein portion of wheat, barley and rye -- their body basically launches an immune response that attacks their small intestine," Feldman said.

Celiac Disease falls into he same categories of other autoimmune diseases, such as diabetes, arthritis and migraine headaches. Feldman said there's a considerable amount of crossover between people who have celiac disease and those who have other autoimmune diseases.

The numbers are staggering. Feldman said there's an estimated 2.5 million Americans with the disease undiagnosed.

Since the only treatment for celiac disease is a strict adherence to a gluten-free diet, many companies have filled grocery store shelves with plenty of gluten-free options. Everything from gluten-free bread, cereals, pastas and frozen dinners.  

"Well, now is a good time to be diagnosed with celiac disease, in terms of our history, because there's basically not a food you can't find a gluten free alternative for," Feldman said.

She said it's easier for someone to live with celiac disease today than it was when she started practicing nearly 20 years ago.

Eating out at restaurants, however, can be more of a challenge.  

"My clients report all the time that they ate a meal that they were sure that was gluten-free and they don't feel good afterwards," Feldman said.

"I think overtime as your body gets used to not having it in your system you become more sensitive if you were to come in contact with it," said Parel. "Where like a year ago, I could go to a restaurant and they would say 'you know this is gluten-free, but we put it in the fryer with this' or 'it's in the oven with the other pizzas,' I was fine. Now I'm in a place where it's not always fine. So I have to be more careful."

Parel said always vigilant when eating out. Even if you are ordering from a gluten free menu, there's always the risk of cross contamination. 

You can read more about Feldman's work at her official website here.

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