AUBURN - When Nicki Hai's daughter, Jessica, was 16 months old, her life got a whole lot more complicated.
Jill Connor / The Citizen
Jessica Hai, 4, of Auburn, has Celiac Disease and is unable to eat foods with gluten. She is finishing up some gluten-free chocolate chip cookies she made at home with her mother on Sunday afternoon. The cookies were made with chickpea flour instead of a flour containing gluten.
Jessica Hai, 4, of Auburn, has Celiac Disease and is unable to eat foods with gluten. She is finishing up some gluten-free chocolate chip cookies she made at home with her mother on Sunday afternoon. The cookies were made with chickpea flour instead of a flour containing gluten.
Jessica, who is now 4, was diagnosed at the time with celiac disease. The condition leads to a severe intolerance to gluten, which is found in wheat, malt, rye and other grains.
Imagine raising a child who is allergic to bread, pasta, cereal, and many processed foods. It is not easy, Hai said.
“At first it was overwhelming,” Hai said. “It is in almost everything, even sauces, dressings and gravy.”
So when Hai found out that there was a national support group for families with children who have celiac disease, she wanted to start one here.
Today, the Auburn chapter of Raising Our Celiac Kids will hold its first-ever meeting at the Owasco Fire House. The event will serve as an introduction to the group, which is meant to be a way for parents to offer information and support to others with kids who have gluten allergies.
Attendees will even be able to feast on gluten-free snacks and drink, Hai said.
"I just know what it was like for me and Jess, and I want to be able to help people in the same situation," she said.
Celiac disease is an autoimmune condition that affects one out of 133 people in the U.S., according the Celiac Disease Foundation. Symptoms of the disorder include abdominal pain, severe gas, chronic diarrhea and other stomach and intestinal problems.
Longer-term effects include fatigue, iron and mineral deficiency and even neurological problems. The only true cure as of now is maintaining a strict, gluten-free diet.
Hai said that when Jessica was first diagnosed, she was given a small pamphlet about celiac disease and very little else. Luckily, she was referred to a person who heads a different support group, and she was also able to do some vigorous research on her own.
After attending some ROCK meetings in other cities and reading extensively on gluten-free living, Hai said she started to get the hang of the lifestyle.
While most of her recipes started with special cookbooks, her multiple years of knowing how to shop has allowed her to experiment with her cooking, she said.
Today, she can make a killer lasagna without gluten. Her waffles are a family favorite, she said.
And while her other children, Abigail, 7, and Colton, 8 months, can consume gluten, Hai makes dinners the whole family can eat and enjoy.
"I have come a long way from my first days of gluten free cooking," Hai said.
Hai said it can still be tough for Jessica, even though she already has a decent grasp on her food limitations. When she goes to birthday parties, she has to bring her own treats and cake.
But in other ways, the condition has been good for Jessica, Hai said. She has a healthier diet than many kids because she has to eat so many fresh fruits and veggies. And living with celiac disease means she has to learn about nutrition and even biology earlier than her peers.
"It has been a different type of education for her," Hai said.
Hai said she hopes ROCK can make things a little bit easier for some families with celiac members. While the group will not have regular meetings, she said she plans to hold frequent events. For instance, holidays can be tough for celiac kids, and Hai said meetings and parties around Christmas or Halloween would be great for the kids,
"What I have enjoyed most about other ROCK parties we have been to is that everything is gluten free and kids can play with other kids who have the same issues," Hai said.
And, she added, the treats are still plenty tasty.
"It's disgusting how many candies you can eat, still," Hai said.
Staff writer Christopher Caskey can be reached at 253-5311 ext. 282 or christopher.caskey@lee.net.
What: Raising Our Celiac Kids, Auburn chapter's first meeting
When: 6 to 7:30 p.m. tonight
Where: Town of Owasco Shelter in the Owasco Fire House, Owasco Street
Cost: Free
For more information about ROCK, e-mail Nicki Hai at jnhai@adelphia.net.
Imagine raising a child who is allergic to bread, pasta, cereal, and many processed foods. It is not easy, Hai said.
“At first it was overwhelming,” Hai said. “It is in almost everything, even sauces, dressings and gravy.”
So when Hai found out that there was a national support group for families with children who have celiac disease, she wanted to start one here.
Today, the Auburn chapter of Raising Our Celiac Kids will hold its first-ever meeting at the Owasco Fire House. The event will serve as an introduction to the group, which is meant to be a way for parents to offer information and support to others with kids who have gluten allergies.
Attendees will even be able to feast on gluten-free snacks and drink, Hai said.
"I just know what it was like for me and Jess, and I want to be able to help people in the same situation," she said.
Celiac disease is an autoimmune condition that affects one out of 133 people in the U.S., according the Celiac Disease Foundation. Symptoms of the disorder include abdominal pain, severe gas, chronic diarrhea and other stomach and intestinal problems.
Longer-term effects include fatigue, iron and mineral deficiency and even neurological problems. The only true cure as of now is maintaining a strict, gluten-free diet.
Hai said that when Jessica was first diagnosed, she was given a small pamphlet about celiac disease and very little else. Luckily, she was referred to a person who heads a different support group, and she was also able to do some vigorous research on her own.
After attending some ROCK meetings in other cities and reading extensively on gluten-free living, Hai said she started to get the hang of the lifestyle.
While most of her recipes started with special cookbooks, her multiple years of knowing how to shop has allowed her to experiment with her cooking, she said.
Today, she can make a killer lasagna without gluten. Her waffles are a family favorite, she said.
And while her other children, Abigail, 7, and Colton, 8 months, can consume gluten, Hai makes dinners the whole family can eat and enjoy.
"I have come a long way from my first days of gluten free cooking," Hai said.
Hai said it can still be tough for Jessica, even though she already has a decent grasp on her food limitations. When she goes to birthday parties, she has to bring her own treats and cake.
But in other ways, the condition has been good for Jessica, Hai said. She has a healthier diet than many kids because she has to eat so many fresh fruits and veggies. And living with celiac disease means she has to learn about nutrition and even biology earlier than her peers.
"It has been a different type of education for her," Hai said.
Hai said she hopes ROCK can make things a little bit easier for some families with celiac members. While the group will not have regular meetings, she said she plans to hold frequent events. For instance, holidays can be tough for celiac kids, and Hai said meetings and parties around Christmas or Halloween would be great for the kids,
"What I have enjoyed most about other ROCK parties we have been to is that everything is gluten free and kids can play with other kids who have the same issues," Hai said.
And, she added, the treats are still plenty tasty.
"It's disgusting how many candies you can eat, still," Hai said.
Staff writer Christopher Caskey can be reached at 253-5311 ext. 282 or christopher.caskey@lee.net.
What: Raising Our Celiac Kids, Auburn chapter's first meeting
When: 6 to 7:30 p.m. tonight
Where: Town of Owasco Shelter in the Owasco Fire House, Owasco Street
Cost: Free
For more information about ROCK, e-mail Nicki Hai at jnhai@adelphia.net.
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