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| Staff photo/Scott Mitchell Johnson Terry and Cathy Kelly of Mapleton will be facilitating a new support group for people in Aroostook County living with celiac disease or those interested in learning more about living a gluten-free life. The Kelly’s 7-year-old daughter, Erinn, was diagnosed with the disease when she was 3 years old. Pictured are Terry and his daughter, who is a second-grader. Informational meetings will be held Tuesday, Nov. 13 from 6-7 p.m. at the Mark & Emily Turner Memorial Library in Presque Isle, and Tuesday, Nov. 20 from 6-7 p.m. at Cary Medical Center’s Chan Center in Caribou. |
By Scott Mitchell Johnson
Staff Writer
MAPLETON — Terry Kelly and his family have spent the last four years learning as much as they can about celiac disease, and now the Mapleton family will share that information with others as they’re starting a new support group for those in Aroostook County living with the condition.
Celiac disease (CD) is a life-long inherited autoimmune condition that affects children and adults alike. When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed.
Kelly said the family first became familiar with CD after his now 7-year-old daughter, Erinn, was first diagnosed with the illness when she was 3 years old.
“She just wasn’t gaining weight,” he said. “She had skinny, little arms and skinny, little legs and this big, distended belly. Erinn had a constant bellyache, so we knew something was wrong; we just didn’t know what.”
Erinn was diagnosed with CD while at a Boston hospital, and ever since, the family has had to make major adjustments to their diet.
“We’re in a routine now, but at first it was a huge mountain we had to climb,” said Kelly. “It’s hard just finding gluten-free food, but it’s equally hard finding what’s good. For example, there’s like 10-15 different brands of pasta, but there’s only two or three that are really palatable. You don’t want them to eat cardboard, so there’s a lot of experimentation.
“We don’t all necessarily eat gluten-free foods, but we don’t make two sets of meals either,” he said. “For example, if we’re having spaghetti, my wife, Cathy, will make one sauce but cook two different kinds of pasta. Or if we’re having grilled cheese sandwiches, we’ll cook the ones with gluten-free bread first and then we’ll cook the bread with the gluten in it. Cross-contamination is a big issue, so you have to be careful with that.”
Fortunately the Kellys have found a brand of macaroni and cheese that is both gluten-free and — according to Erinn — delicious.
“Macaroni and cheese is my favorite food,” said Erinn, a second-grader at Pine Street Elementary School. “Annie’s Homegrown mac and cheese is really good. It doesn’t have gluten in it, so I can still have my favorite food. I also like chili, which doesn’t have gluten in it anyway.”
“The way to look at it is not what you can’t have, but what you can have,” Kelly said. “There’s a lot of food out there that doesn’t have gluten. We just have to find things that Erinn likes.”
To help share their information and resources with the community, the Kellys will be facilitating a new celiac disease support group. An informational meeting will be held Tuesday, Nov. 13 from 6-7 p.m. at the Mark & Emily Turner Memorial Library in Presque Isle, and Tuesday, Nov. 20 from 6-7 p.m. at Cary Medical Center’s Chan Center in Caribou. The location of the monthly meetings will be determined based on the attendance of the two informational meetings.
“I was volunteering with Bill Flagg at Cary Medical Center for Ride Aroostook and we had talked a little about celiac disease,” said Kelly, “but it was after Bill heard a podcast called Gut Reaction that he called me and said we need to work on a grant and start educating people.
“In addition to the support group, next spring Erinn’s doctor, Dr. Brian Gilchrist, is going to come up and we’re going to do a ‘Lunch and Learn’ with area doctors, and the next day we’re going to be doing a daylong program to educate the public,” he said. “We really want people to learn about this disease. Celiac affects 1 in 133 people, but a lot of people haven’t been diagnosed yet.”
Kelly said the support group will be for people and their families who have CD, as well as those interested in learning more about living a gluten-free life.
For more information about the support group, call Kelly at 768-7550.
