Tue August 30, 2011
WNY Group promotes awareness of Celiac disease
Most people are pretty familiar with food allergies. Restaurants and product labels have even come a long way in helping people to avoid dangerous reactions to such food allergies as peanuts or shell fish.
But there are three million Americans suffering from a food allergy-like disease that is still largely unknown - and largely misunderstood.
The Western New York Gluten-Free Diet Support Group is trying to change that by raising awareness of celiac disease with an event on September 10 at the Hearthstone Manor in Depew.
WBFO's Joyce Kryszak talked with some people about what it's like to live without wheat.
It's a little stressful this evening at the Sweet and Navratil home in Kenmore. Making dinner isn't quite the fun family activity it normally is for Kara Sweet, her husband Jonathan Navratil and their two children Zoe and Zack.
Earlier that afternoon at the doctor's office, Sweet said they found out Zoe's Celiac test results.
"She has celiac disease," said Sweet.
Zoe doesn't have any symptoms now. But Sweet knows only too well how damaging celiac's disease can be over time. Sweet said by the time she was diagnosed as an adult four years ago, she was very sick.
So, the UB employee switched doctors and the first thing he tested for was celiac disease. And the treatment was simple. No pills, no shots, just a totally gluten-free diet. Within two weeks of eating gluten-free, Sweet said she was on the road to full recovery.
But celiac disease is not a food allergy. It's an auto-immune disease that turns the body's defense system against itself, destroying the intestines whenever a gluten product is eaten.
That means anything containing even a trace of wheat, barley, rye and sometimes oats. The disease can be genetic and inflict anyone of any ethnicity or age. That's why Sweet says they started getting Zoe and Zack tested every year.
Untreated, the disease can lead to other serious illnesses, such as cancer. But as Sweet found out, surprisingly, many doctors don't even know much about celiac disease.
Cliff Hauck heads the Western New York Gluten-Free Diet Support Group. He said, historically, it wasn't part of most physicians' training.
That's changed. But Hauck said they still are trying to get doctors caught up. The support group, as well as its national parent group visit doctor's offices to educate them about celiacs disease.
And they provide support to suffers through information shared at monthly meetings. Hauck's wife, who has had the disease for 25 years, is a member. But Hauck said not everyone wants support, or to live a gluten free life style.
But living gluten-free doesn't have to be that hard anymore.
Back in Sweet's kitchen she shows us some of the many, tasty gluten-free products that are now available. Markets offer everything from cookies and bread to crackers and mac and cheese for celiacs, as sufferers call themselves.
Still, the products are very expensive, double and sometimes triple the cost of their gluten counter-parts. And Sweet said there are still things that can't be replaced.
"Long island pizza. My mouth waters just thinking about it," said Sweet.
She says standing by at family gatherings watching others eat, when there's nothing gluten-free available as a substitute can be very emotional.
But she said that happens far less often thanks to many restaurants that now offer gluten-free items on their menus.
Krista Van Wagner takes us for a full tour of Curley's restaurant in Lackawanna. The restaurant has been in the family for three generations. Van Wagner and her husband Kirk are both chefs. They've used that expertise not only to make the food great, but to make 75 percent of it gluten-free.
That includes pasta dishes and gourmet dishes with delicious sauces.
Van Wagner's son was recently diagnosed with Celiac. But her sister has lived with Celiac for about ten years. So, Van Wagner made her a promise. Her sister might have to live without wheat, but she wouldn't have to live without cookies and pizza.
"There's so much we can do for people here," said Van Wagner. "You just have to learn how to cook."
People with Celiac can learn more about how to cook and eat using alternative flours and products at the all-day event on September 10 at the Hearthstone Manor in Depew.
It will feature guest speakers, a vendor expo - and, of course, a gluten-free luncheon.
More information is available at Gluten Freedom Day.