"The Cloud in the Kitchen" - The growing fear of celiac disease - WXOW News 19 La Crosse, WI – News, Weather and Sports |

"The Cloud in the Kitchen" - The growing fear of celiac disease


ROCHESTER, Minn. (KTTC) --  Think about all the food you loved as a kid.  The juicy burgers, those salty fries, and what kid doesn't love pizza?  

Now imagine for a second they were all gone.  

That's what life is like for 14-year-old Anna Cook who was diagnosed with Celiac disease at age 7.  The disease is an auto-immune disease that affects the digestion of gluten and can lead to malnourishment.

"At first they didn't think it was anything, but I'd lost 20 pounds in a few months," says Anna Cook.

Anna is not alone either.  It's estimated that 1 in 133 Americans have Celiac disease.  83% of those individuals who have celiac don't even know they do because most of them have been misdiagnosed with other diseases.  This is an experience that brought Anna's mother Kathy some relief.

"I always tell people.  When the doctor comes walks in to your room and says your child does not have Leukemia, whatever they say next is a blessing," jokes Kathy Cook.

Dealing with Celiac isn't as cut and dried.  According to gastroenterologist Dr. Amy Oxentenko there is currently only one thing you can do.

"You think about someone with high blood pressure or a disease they can take a pill to help that condition, but with celiac disease the treatment is completely modifying your diet," says Dr. Oxentenko.

For the Cook family that meant the whole family was going gluten-free.

"We just thought that would be more fair to Anna.  We just thought it would be really difficult to have everybody eat whatever they wanted, and then say, "Well Anna you can only have this, this, and this," reasoned Kathy Cook.

The family proceeded to gut the kitchen.  They removed toasters, knives, pans, and even the stove.  The Cook's removed anything that could have been in contact with gluten.  They read label after label trying to restock the kitchen to be gluten-free.  Their choice even went beyond the kitchen affecting travel plans and nights out.

"We were going on a two week camping trip out west and right before we left we discovered Udi's bread.  We actually took two weeks worth of bread so that we'd be able to have...EAT! Going off camping in the middle of nowhere," explains Anna's mother.

"It can be kind of difficult going out to restaurants because they don't really know what gluten is," reflects Anna Cook.

Anna is lucky.  It's not uncommon in Rochester to find restaurants that offer gluten-free alternatives, but what makes it scary is not knowing how, or where, the items are prepared.

Michelle Salz is the owner of Twig's Restaurant, and after being diagnosed with Celiac disease she battled similar issues as the Cook's.

"The hardest thing is traveling, there are times I have packed a toaster, and bread and peanut butter and jelly because I didn't know if I was going to eat," says Salz.

Determined to make going out easier.  Salz turned her restaurant into a gluten-free haven by creating a separate kitchen and even refrigerator.  She tried to eliminate all sources of cross-contamination.

"Even though it may say it's gluten-free there's the sauces, there's the other condiments, there's the grill, all things that can lead to contamination in one's diet," says Dr. Oxentenko.

For people with celiac, even trace amounts of gluten can be enough to cause damage.  The fear leaves children like Anna to constantly educate themselves.

"If they really don't wanna ask a lot of questions they know the safe things that they can eat," says Kathy Cook.

As studies continue across the country to find a cure for the rapidly growing disease, families like the Cook's will have to try to bite into anything that is safe.
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