POULSBO — Six years ago Tim and Dawn Simonson’s daughter Noelle stopped gaining weight.
The 2-year-old weighed as much as she had at age 1 and although she was well fed, her belly swelled like that of a malnourished child.
After months agonizing over what was wrong with their daughter, the Simonsons were finally informed that Noelle had been diagnosed as one of the nearly one in 300 Americans who suffers from Celiac Disease.
The auto-immune disease makes a person’s body unable to digest the gluten from sources like wheat, barley and rye. The undigested glutens coat the inside of the intestines and the individuals essentially begin to starve because their bodies cannot absorb nutrients. The only treatment is a totally gluten-free diet.
When the Simonson’s heard that news, at first it felt like a terrible burden.
“You think your child’s never going to be able to eat anything again,” remembered Dawn. “I mean, just about everything has gluten in it.”
“Just getting started was overwhelming,” added Tim.
Although at first glance living gluten free may seem like a simple task, the Simonsons said it hasn’t been. Besides the obvious breads, pasta and crackers, gluten can also be found in things like lunch meat (some brands are bound with flour), potato salad (some kinds are made with malted vinegar) and even some condiments like catsup, mustard and soy sauce. Reading and understanding labels has become a necessity for Noelle’s health, and when a label is not specific enough, the family has to contact the company before Noelle can partake.
“We’ve got a big thick folder of products that we’ve contacted the companies about because it’s too hard to remember all of them,” explained Tim.
Making things even more complicated is the fact that Noelle’s condition will even react to traces of gluten, meaning cross-contamination is also a factor. Noelle has her own toaster and even her own peanut butter and margarine to avoid small crumbs from other family members’ meals coming in contact with her food.
Eating out is also a major feat.
Noelle usually can’t order off the kids menu because most of the products are breaded. Most restaurants coat their french fries with flour, but even if they don’t Noelle can’t have them if they’re cooked in the same oil as onion rings or other breaded items.
“Usually when we go out to eat our waitress is run ragged running back and forth to the kitchen to ask about what’s in certain things,” said Dawn.
This month, the Poulsbo family has started a group called Raising Our Celiac Kids (ROCK). The original support group was started by the mother of a Celiac child from San Diego and the Simonsons are said to have started the first-ever Washington chapter. But they don’t want the name to fool anyone, they say the group is for anyone coping the life changes of a gluten free diet.
“We just want to see who’s out there, what they’re going through and if they have any good ideas,” said Dawn Simonson.
But more than anything, the family said starting a ROCK group is about making other people comfortable about the disease. The group plans just as much fun time as it does learning time because, as the Simonsons try to stress, their daughter is a person — not a disease.
“She’s just a normal, healthy kid who has to bring her own snacks with her everywhere,” said Tim Simonson.
The local chapter of ROCK meets next on Sept. 28. For more information, call (360) 779-9292. More information about Celiac Disease can also be found at http://www.celiac.org.