MAPLETON, Maine — 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 as they start a support group for those in Aroostook County living with the condition.
Celiac disease is an inherited autoimmune condition that affects children and adults alike. When people with celiac eat foods that contain gluten, it creates an immune-mediated toxic reaction that damages the small intestine and does not allow food to be properly absorbed.
Kelly said the family became familiar with celiac after his now —year-old daughter, Erinn, was diagnosed with the illness when she was 3.
“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.”
Ever since Erinn was diagnosed while at a Boston hospital, 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 in Presque Isle. “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.”
Kelly said Nora Bonville and the cafeteria workers at Erinn’s school have worked closely with the family.
“A week before the monthly menu comes out, Erinn will go through it and circle what she wants and put an ‘X’ through the things she doesn’t. The ‘Xs’ mean we bring a bag lunch, and items that are circled the cafeteria workers help with,” he said. “For example, on a day they’re having macaroni and cheese, the school makes sure they have Annie’s mac and cheese there. They’ll cook it and give it to Erinn. They’ve been fabulous to work with.”
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 to 7 p.m. at the Mark & Emily Turner Memorial Library in Presque Isle, and Tuesday, Nov. 20, from 6 to 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 celiac disease, as well as those interested in learning more about living a gluten-free life.
“I’ve talked to a lot of people who know somebody who knows somebody that plans to go, so we’re hoping for a good crowd,” he said. “We want the support group to be more hands-on. We want to show people how to cook gluten-free pasta, for example. Two or three times a year, we’d also like to have a potluck where everybody brings something that’s gluten-free. We’re optimistic that this support group will be beneficial to people in the community.”
Kelly encourages people to listen to the podcast by searching “gut+reaction+celiac.”
For more information about the support group, call Kelly at 768-7550.