Rare Disease Keeps Dallas Chef From Eating Food She Prepares

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    NEWSLETTERS

    A Dallas chef is kept from eating some of the food she makes because of a rare and commonly misdiagnosed disease. (Published Thursday, Nov 15, 2012)

    Chef Nancy Maslonka's passion is for cooking, but she can't eat a lot of the food she prepares.

    Maslonka has a rare disease called eosinophilic esophagitis, or EE for short, which causes her throat to swell up.

    She first noticed problems when she started choking on everyday foods --- requiring the Heimlich maneuver. Her frustration grew as doctors couldn't find anything wrong with her.

    "Knowing that as food continued to get stuck, that something was wrong," Maslonka said. "To have physician after physician after lab report after result come back with nothing's wrong, nothing abnormal. I knew something was wrong. I was confident in my own body, knowing what normal responses should be and that wasn't one of them."

    After three years and a half-dozen physicians, she was finally diagnosed with EE. 

    Amber Grapevine, a registered dietitian says symptoms are normally first seen in children.

    "If they're losing weight, if they're having the nausea and vomiting, the reflux-type symptoms," Grapevine said.

    Parents and sufferers are often confused because foods may only cause problems sporadically.

    "What's odd is that one day I can eat carrots, a week from now I can have a little piece of shredded carrot, or a piece of carrot or a cube, and it gets stuck. So everyday it's a different adventure," Maslonka said. 

    An adventure that is exceptionally problematic for a chef. Maslonka is still able to cook and taste food, just in very small amounts -- with some ingredients off limits.

    "Eating for me has lost a lot of its -- a big part of that pleasure factor, because I'm always on guard," Maslonka said. 

    It's a lot like a painter who can't use the color blue. But Maslonka says this rare disease just makes her more creative.

    EE Resources: