Celiac Disease is misdiagnosed in 97% of all cases despite growing awareness

For years, going to the grocery store was like a scavenger hunt for Karen Dorazio. Her youngest daughter was diagnosed with Celiac Disease, a disorder that doesn't allow her to eat gluten, which is a protein found in wheat.

For years, Dorazio had to check everything from salad dressing to vitamins to see if they contained any trace of wheat.

Karen Dorazio says, "When she was first diagnosed 13 years ago we had to order food from catalogs."

The University of Chicago's Celiac Disease Center estimates that 3 million Americans are affected by Celiac Disease but more than 97% of them may be misdiagnosed. Laurel Sterling Prisco, a dietician at the Natur-Tyme store in DeWitt says that while awareness of gluten free has helped, many people may not even know they have celiac disease.

â??I know that it is one of the most misdiagnosed diseases because a lot of times they will think it's irritable bowel or possibly just Krohn's or Colitis or possibly not even any of those and people go undiagnosed for 11 years," said Sterling Prisco.

There is no prescription that can help Celiac Disease or a gluten allergy, the only option is a completely gluten free diet.

Over the past few years, food companies have developed a lot more options. Dorazio says more options and better labeling at grocery stores have allowed her family to feel safe about buying everything from french fries to frosting for a birthday cake.

Dorazio says, "I can serve my whole family and everyone at a party and they can't tell the difference. It's delicious."

Grocery stores are just the beginning and a number of restaurants are beginning to serve gluten free foods as well.

Every morning, Erin Gridley and her crew start early, making custom breads, cakes, gourmet cupcakes. They make everything you expect to see in a bakery, but her restaurant has a growing following not just for what's in the food, but what isn't. Yum Yum's Cafà off Seeley Road on Syracuse's east side serves baked goods that are 100% free of wheat and gluten.

Gridley says, "I think it gives people a sense of security. Even going to a friend's house for dinner, you have to worry about what you are going to eat and do you bring your own food." Two of Gridleyâ??s children have Celiac Disease, and she became very good at cooking with oats and other gluten free ingredients. She realized there were a lot of people who wanted to eat out but were afraid wheat ingredients could contaminate their order. Gridley says, "You have to make sure your utensils, your work space, everything is completely 100% gluten free in order to keep the risk of any type of cross contamination down."

For Kathy Cragin, Yum Yums has allowed her to enjoy all sorts of gluten free foods that were impossible before including pizza, and gourmet cupcakes like tiramisu, chocolate bomb and champagne.

Cragin says, "I can eat healthy and like this evening, I have people coming for dinner. I'm going to have the cupcakes so I can have what I want and I'm not going to say anything to anybody, but I know they'll love them."

While awareness of Celiac Disease has increased, 97% of the people who are suffering from the disease continue to be misdiagnosed.

close video ad
Unmutetoggle ad audio on off