Just a few years ago, people with celiac disease and other digestive disorders had to go to natural foods and specialty stores to find gluten-free products.
Now, entire sections in grocery stores are devoted to gluten-free items and many restaurants identify them on their menus.Abby Clements and her mother Dawn shopped in the gluten-free aisle at Sentry Foods in Port Washington. Photo by Sam Arendt
The packaged foods also taste better, said Abby Clements, 11, of Port Washington, who was diagnosed with celiac disease when she was 6.
“When I first got it, my pizza looked a lot different than my friends’ pizza,” Abby said. “Now, it looks similar. Some of my friends tried it and they said it tastes like their pizza.”
A sixth-grader at Thomas Jefferson Middle School in Port, Abby must bring her own lunch to school and rarely can trade anything, except fruit, with friends.
When there are pizza parties and ice cream socials at school, she brings her own or watches. Some ice cream brands are gluten free, her mother Dawn said.
“You have to read the label every time you buy it,” her mother said. “It may be gluten free one time, but the next time it could have gluten.”
When Steve SanFilippo added a gluten-free aisle and frozen-food section at Sentry Foods store in Port three weeks ago at the request of a customer, he was surprised at how fast the items sold.
“It’s been going like gangbusters,” SanFilippo said. “A salesman came last week and I had to order another 10 cases.
“This isn’t a fad. Some individuals need gluten-free to digest their food. We try to get whatever people want. We want people to be able to buy what they need in Port.”
Abby doesn’t know anyone else in her class who has the disease. Her best friend’s family is aware of her allergy and always makes sure to prepare food she can eat, so she’s comfortable eating at their house.
But everywhere else, she brings her own food. She prefers doing that to getting sick.
If she eats gluten, Abby said, she gets severe migraine headaches and vomits for three to four hours.
“I also get mean and ornery,” said the normally sweet-tempered girl.
“It used to be hard (not to eat what her friends ate), but I’ve gotten used to it and my friends understand.”
Her mother added, “We’re just glad that it’s something we can control with diet.”
For Shelly Lemons, wife of the Rev. Brandon Lemons of Friedens Evangelical Church in Port, gluten-free doesn’t necessarily mean she can eat it.
Lemons, who learned she had celiac disease after graduating from college, is also allergic to sugar and dairy products.
Shortly after starting her first job, Lemons said, she became violently ill and unable to digest food. She had an “aha moment” when she baby sat for a family whose 6-year-old son couldn’t eat gluten.
“They said if he eats the food, this is what will happen, and the light went on,” Lemons said.
After one month of not eating gluten, she was feeling normal. A blood test confirmed the likelihood of the disease. A biopsy taken after eating gluten for 30 days would give a definite diagnosis, but that’s something she isn’t willing to do.
Anyone who thinks they have celiac disease should contact a gastroenterologist before going gluten-free, Lemons advised.
Her 2-year-old son Mikias, who was severely malnourished and barely able to stand when the couple adopted him in January from Ethiopia, appears to be allergic to gluten, dairy and soy.
“He looked like the African children in posters with his distended tummy and skinny arms and legs,” Lemons said. “He likely would have died in a week. He was tested for parasites and that was negative.”
As soon as she tried gluten-free foods, Mikias began to gain weight and started breathing normally.
He grew three inches in three months and is now within the normal range, both physically and developmentally. A typical 2-year-old, Mikias runs from one end of the room to the other and asks questions of anyone who will listen. He loves to sing and laugh.
Ethiopian diets are basically gluten free, Lemons said, but Mikias was given powdered formula that contained gluten and milk.
When Lemons switched him to a rice-based formula, he flourished. He became sick when he was given soy milk and he doesn’t like almond milk, which Lemons drinks, so she mixes it with rice milk, which doesn’t have as many nutrients but he will drink it.
The toddler’s favorite treat is a Lava bar, a gluten, dairy-free chocolate energy bar. Lemons makes his baby food. Mikias refuses to eat commercial baby food. His sandwiches are rice cakes with peanut butter or humus.
Lemons will gradually introduce gluten into his diet when he gets older in hopes that he doesn’t have celiac disease.
“I don’t want him to have to live with those restrictions, to miss out on things,” she said.
Lemons prefers focusing on what she can eat rather than what she can’t eat.
“If I ate only gluten-free products, I would starve to death,” she said. “When I first was diagnosed, I dropped my whole paycheck at natural foods stores for gluten-free products. They’re so expensive. I realized I didn’t need all that.
“I either make ethnic foods or what my grandparents ate. We have a lot of soups, stews and roasts with potatoes and carrots.”
She noted fruits, vegetables, fish and meat are gluten-free. Quinoa is an ancient non-gluten grain that is becoming popular.
It’s flour that’s the main culprit.
Lemons brings her own food when going to functions or dinner parties, even with her family, so the hosts don’t have to worry about what to serve her.
“Brandon loves it. He says, ‘I’ll eat Shelly’s share,’” Lemons said.
He also gets extra pieces of wedding cakes and other desserts.
Lemons is comfortable eating anything from Taste of Africa in Port and Slow Pokes Food in Grafton. Both have gluten-free kitchens. Cross-contamination is a concern if equipment and utensils for gluten products are also used for gluten-free items, Lemons said.
“People often say things like ‘Well, if I had to eat that way, I would be thin, too.’ After finding out about celiac, I put on weight like crazy because I was not sick any more,” Lemons said.
“I was the heaviest of my life while eating gluten free. After all, potato chips are gluten free and so are many other foods that are not super healthy. I have to watch what I eat just like everyone else.”
Abby is the only one in the Clements family who is gluten intolerant.
“Our meals are 95% gluten-free, usually meat and vegetables,” her mother said.
Abby has her own toaster for her gluten-free bread. She also has her own peanut butter and jelly because crumbs from her sister’s sandwiches could get into them if they shared the same jars.
Abby’s baking dishes are also kept separate.
Before Abby found a bread she liked, she and her mother made gluten-free bread and bagels. They still make gluten-free cinnamon rolls and cookies.
Clements met with Abby’s teachers before classes started to explain her daughter’s disease.
“They’re good about giving candy that’s gluten-free for rewards,” Clements said.
“The biggest issue is people don’t realize it’s an auto-immune disease. They say, ‘She can try a little piece.’ No, she can’t.”
Abby must also use shampoos, conditioners, lotions and lipsticks that don’t contain wheat germ, oatmeal or other grains.
Abby said she’s learning how to read labels, but double checks with her mother before buying something.
When she’s gluten-free, Abby is a happy, energetic girl. She is on the school’s cross-country team, a member of the art club, takes piano lessons and is in gymnastics. She is also president of her class.
Shelly Lemons’ and Abby Clements’ favorite gluten-free recipes can be found on the recipe page.