Megan Kemp gave birth to her son Hunter in January 2003. He was a healthy child, falling in the 75th percentile for weight. By age 3, Hunter weighed 38 pounds. By age 4, however, he weighed 37 pounds, and by 5, that weight hadn’t changed. Mom was beginning to get very, very worried.
“We didn’t know what was wrong,” said Kemp, a Sangerville resident.
In the summer of 2008, Hunter’s new doctor, Dr. Mohammed Tabbah of Eastern Maine Medical Center, tested him for celiac disease, a genetic disorder that means the digestive system cannot process gluten, leaving sufferers malnourished, fatigued and depressed.
Like hundreds of thousands of people in the United States, Hunter had the disease. Many more thousands have gluten sensitivities or allergies, which aren’t the same thing as celiac disease, but also cause an array of adverse reactions, such as fatigue, diarrhea, muscle cramps and various forms of eczema.
There’s only one treatment for celiac disease: not eating anything containing wheat, barley or rye. Kemp put her son on that diet immediately.
“His energy level really increased. He gained weight so fast. His skin color improved. Everything improved,” said Kemp. “It was like night and day.”
According to several medical studies, as many as one in 133 Americans have a gluten allergy, a gluten sensitivity or celiac disease. Evidence of the growing awareness of gluten sensitivities can be seen in the explosion of gluten-free products and gluten labeling on packaging on foods in supermarkets everywhere, just within the past few years.
Tabbah, a pediatric gastroenterologist, has seen a marked increase in recent years in diagnoses of celiac disease, and of gluten sensitivities and allergies in general.
“Definitely the number of cases diagnosed in about the past 10 years has been increasing, both nationally and in Maine,” said Tabbah. “The incidence of celiac disease in Maine is higher than in other places. It’s a genetic disease, and the genetic mix up here in Maine means more people have more potential to develop it. The numbers have been increasing. There’s a lot more awareness of it now.”
Though Tabbah cautions that the only way to know for sure whether one has celiac disease is to undergo the proper medical tests, there are many people who try a gluten-free diet just to see if it improves various health problems. It had never occurred to Brewer resident Teresa Wong that the foods she loved might be aggravating her lupus, a disease of the autoimmune system, until a customer at her shop broached the subject.
“I had a customer right out of the blue ask if I had lupus because I had psoriasis on my face, and I do have lupus,” said Teresa Wong, who runs the Creative Arts Center in Brewer, and formerly operated Smith’s Ceramics on Cedar Street. “They said, ‘You know, you might want to try not eating gluten for a little bit. I’m not a doctor, but my face looked like that, and it cleared up when I stopped eating gluten.’”
Wong looked it up online, and was stunned to find that nearly every one of the symptoms she exhibited was connected to gluten sensitivities.
“I was like ‘Oh God, I’ve got every single one of them,’” said Wong. “Tingling in the hands and feet, muscle cramps, upset stomach all the time, bad skin, fatigue. I couldn’t believe it.”
Wong went gluten-free. Those symptoms have largely disappeared, and though she misses things like garlic bread and good pasta, the tradeoff is that she is healthier than she’s been in years.
“My skin is much better. I’ve lost a lot of weight. My body was telling me I wasn’t getting the nutrients I needed. I’d still be hungry after eating a meal,” she said. “I’m not anymore. I went shopping with my friends, and we were walking around, and my friend stopped and looked at me and said ‘You didn’t have to stop to rest your legs once.’ It’s been hugely beneficial.”
Going gluten-free is one of the more challenging diets a person can adopt. Though things like bread and pasta are obvious, there are thousands of other kinds of foods that contain wheat that you’d never expect. Salad dressings, soups and sauces are usually thickened with wheat. Malt vinegars and Worcestershire sauce contain wheat; so do most varieties of soy sauce. Packaged, processed foods containing lots of preservatives and derivatives usually contain gluten. Being gluten-free means reading a lot of ingredients lists.
Sasha Alcott of Bangor stopped eating gluten about five years ago, after trying a gluten-free diet initially and finding it cleared up stomach problems. She decided to use her new diet as an opportunity to eat more healthfully in general — and to explore other cuisines that don’t use wheat quite as often, such as Thai, Vietnamese and Japanese foods, which rely mostly on rice.
“People need to start eating real food,” said Alcott, a teacher at Bangor High School. “If it’s got some huge, long list of ingredients on the label, it probably not only contains gluten, it’s probably also not that good for you. Being gluten-free is hard to negotiate outside of your own home, but it is a great excuse to eat healthy.”
In the most extreme cases, even putting a gluten-free food item on the same countertop as a gluten-containing food can mean a bad reaction in a person with celiac. Tracy and Mary Beauregard of Hampden know this well, as their daughter Danielle, who already suffered from brain damage due to infantile seizures, had lost 7-10 percent of her body weight at age 13.
“Neurologists thought it was due to the seizures and medication. Mom just knew there was an underlying problem,” said Mary Beauregard. “Long story short … she was diagnosed with celiac.”
Two years later, Danielle has gained back her weight and has improved in all areas, from cognitive function to energy levels. While Mom, Dad and sister Lindsay do not have celiac disease, they operate a gluten-free kitchen to keep Danielle safe.
“Cross contamination is something we have to be really careful about,” said Lindsay Beauregard, 18. “If we have bread for sandwiches, we need to wipe down the counters afterward. If we have pasta, we have a pot for her noodles and a pot for ours. We have to be really careful.”
Sister Lindsay doesn’t particularly enjoy the typical gluten-free foodstuff available at the grocery stores. Her distaste is echoed by a lot of gluten-free eaters. Wheat-free cookies are hard and tasteless, and rice pasta has a gummy texture. Gluten-free bread just isn’t the same.
“I think a lot of the gluten-free stuff at the store is so gross. But then again, Frank’s Bakery [in Bangor] and Pat’s Pizza have been amazing,” she said, referring to both establishments’ gluten-free products. “We went out to eat at Gritty’s in Freeport and they were so accommodating. A lot of brands put ‘contains gluten’ labels on the packages. People are starting to realize that there are a lot of people out there who don’t want to or can’t eat gluten.”
Megan Kemp jumped into gluten-free home cooking with gusto. An avid baker to begin with, she experimented with blends of gluten-free flour before coming up with a mix she likes. Rice, tapioca and potato flours blended together make a very good baking mix, and it’s one that she put to good use when she baked hundreds of gluten-free whoopie pies to sell at the Maine Whoopie Pie Festival in Dover-Foxcroft in June.
“I start with a recipe and then I tweak it, because most of the time, it’s never very good,” said Kemp. “My husband is a pretty picky gluten-free eater, and I came up with a pancake mix that he really likes. So that was a success.”
Bangor resident Summer Allen went gluten-free in early 2009 to treat her painful eczema. She’s well aware of the limitations of her diet, but rather than fight it or try to find less-than-ideal substitutions for bread and pasta, she’s embraced a lot of non-gluten foods.
“You’ve got to let go of a lot of the foods you used to eat,” said Allen. “There are so many other foods out there besides the stuff you always think of. Why spend five dollars on a box of gluten-free crackers, when you can just use a cucumber? Once you get out of that mindset, it’s a lot easier.”