“Could I have two of these?” asks 4-year-old Ainsley Matuson, plucking two blood-red plums from the refrigerator and holding them above her head.
“She’s wanted to try them,” said her mother, Priscilla. “We told her if she likes them, we’ll get a plum tree and plant it in the yard.”
Using a step stool to reach the faucet, the youngest Matuson, 3-year-old Sydney, helps her mom wash produce.
This is lunchtime at the Matuson house.
The Egg Harbor Township family’s enthusiasm for healthy food would be the envy of most parents, but Priscilla Matuson said it is the only lifestyle they’ve ever known.
The Matuson sisters, their aunt and their parents all have celiac disease, an autoimmune disorder that inhibits the absorption of nutrients from their food.
Every time they are exposed to gluten — a protein in barley, rye and wheat that is used in a myriad of cosmetics, foods and medicines — their immune system damages the finger-like villi that line the walls of the small intestine and absorb nutrients into the bloodstream. In the short-term, the disease results in a host of gastrointestinal and neurological symptoms. If left untreated, it could lead to various forms of cancer, liver disease and malnutrition.
“Sometimes, we’ll pass the McDonald’s playground and they’ll ask: ‘Can we go there?’” said Matuson, who lives in the Bargaintown section of the township. “We tell them that place has gluten and you could get sick.”
The National Institutes of Health reports that 2 million Americans — about one in 133 people — have the disease, which was once considered a rare disorder.
Even more people exhibit the symptoms but have not been diagnosed. An estimated 6 percent of the population — or 18.4 million people — are gluten-sensitive, the Center for Celiac Research at the University of Maryland reports.
In recent years, companies ranging from General Mills to the Galloway Township-based Heavenly Foods Inc. have thrived on the growing awareness of gluten sensitivity.
A mystery diagnosis
Priscilla Matuson, 35, started taking charcoal pills and prescription medications in her twenties for what her doctor thought was gastritis, an inflammation of the lining of the stomach.
“It wasn’t enough,” she said. “I spent a decade exceeding the maximum dosage just to get through my gastrointestinal illness.”
But Matuson continued on through the cramping and the upset stomach, achieving only temporary relief.
“The doctor said that’s what it is and I had to live with it,” she said.
Nearly a decade later, Matuson’s first daughter was born a month early. And while she was pregnant with Sydney, she went into labor in just her 19th week.
“I was relying on injections and oral meds to help keep her inside,” she said.
In December 2008 — after the first two days of training for a 5k run left her with severe knee pain and gastrointestinal symptoms — Matuson finally learned the cause of her lifelong illness. A biopsy, followed by genetic testing, revealed her mystery ailment was celiac disease.
And the disease had not only manifested itself in preterm pregnancies and an upset stomach.
Three decades of malnutrition had done real damage, as evidenced by a bone-density test Matuson had completed at the time.
“The doctor told me I was 33 with the bones of an 80-year-old,” she said. “The malabsorption meant no matter how much milk I drank, I had no vitamin D or calcium.”
Dr. Kenneth Schwab, division chairman of gastroenterology at Shore Memorial Hospital in Somers Point, said that awareness of the disease, among both doctors and patients, has grown in the past decade.
“We used to think it was just diarrhea, but that’s not the case,” he said. “It could present as anemia, growth retardation in children, bone disorders and a sensitivity similar to irritable bowel syndrome.”
In his own practice, Schwab said he has seen more patients with either the disease or a milder gluten sensitivity. Once the diagnosis comes, he said the only solution is a lifestyle change.
“Some people feel the diet is somewhat unpalatable, but with time they get used to it and it becomes second nature,” he said. “They have to read labels and purchase from specialty food stores or online and, after a period of time, they don’t think about it.”
A gluten-free glut
When Jeannie Price, a 62-year-old grandmother from the Smithville section of Galloway, started shopping her homemade brownies around to local health food stores in 2002, there was almost no competition.
“There were a few gluten-free cookbooks, and you started to hear a little about it from that woman (Elisabeth Hasselbeck) on ‘The View,’ but to me it was an undercurrent,” she said.
But with more consumers becoming aware of gluten sensitivity, the market for gluten-free food has grown exponentially. Packaged Facts, a food industry market research firm, reports that gluten-free foods reached $2.6 billion in retail sales last year. The group predicts that number to reach $6 billion by 2015.
Last year, General Mills replaced its barley-based sweetener with molasses in Rice Chex cereal. National restaurant chains, such as Carrabba’s Italian Grill and Ruby Tuesday’s, have started offering special gluten-free menus.
Price is one local entrepreneur hoping to capitalize on the growing demand for gluten-free foods.
After a decade of building her Sweet Baby Cakes brand, Price has traveled hundreds of miles in the past week to finalize a deal that could produce a million brownies per month by the end of this year. Her days are full of meetings with accountants, distributors, investors and lawyers.
If all goes to plan, the brownies — with her grandchildren’s smiling faces on the packaging — would be sold at coffee shops, convenience stores and grocery chains in the tri-state area.
“I’m a little over my head right now,” said the former casino dealer who started baking the gluten-free treats in her kitchen and now works with a co-packer. “It’s been a long road, but even the hard knocks were worth it.”
She stumbled onto the burgeoning industry when her youngest daughter was diagnosed with a gluten sensitivity and was trying to adjust to a new diet.
“I was visiting her in Georgia, and I had picked up a book on gluten-free (food) so I could teach her how to cook,” she said. “It just so happened that my brownies had no gluten in them.”
The time-tested recipe, which Price had been using for more than 30 years, called for bean flour. She started sending samples across the country, making connections in gluten-free support groups and the health food industry.
“I didn’t know anything about the food industry, and I didn’t think I’d be a part of this,” she said. “But this is what happens in life, and I embraced it.”
Arturo Chilelli, owner of Calabria Pizza & Italian Grill in Absecon, devised a gluten-free menu in 2009 after one of his regulars was diagnosed with celiac disease. Most of the foods that are on the normal menu now have gluten-free alternatives, cooked in a separate area of the kitchen with separate utensils to avoid cross-contamination.
The gluten-free menu has made his restaurant popular among celiac sufferers who have limited dining options.
“I get people from all over,” he said. “People come on vacation, Google me and I come up as a gluten-free menu.”
But Chilelli said keeping his customers happy and healthy is more important than the financial boon of his unique offerings, which also include sugar-free foods for those with fructose intolerance.
“It makes me feel good that people are coming out to eat,” he said. “It’s not easy (for celiacs) to go out to eat.”
A new lifestyle
Dining out is just one of the difficulties for the Matuson family. In one restaurant, Priscilla Matuson said the bus boy carried water on the same tray as a bread basket, setting off a reaction.
At another restaurant, she said an order of vegan sushi had been contaminated with gluten, unbeknownst to her.
“My reaction was so severe, I couldn’t walk out of the restaurant,” she said.
A fluke of genetics — both Priscilla Matuson and her husband Greg, whose symptoms are milder, passed the celiac gene onto their children — meant the family had to completely eradicate the nearly ubiquitous grain protein from their lives.
The diagnosis forced the family to completely alter its lifestyle and led Priscilla to look at the ordinary household items most people take for granted in a different way.
“Potentially anything could have gluten in it, and it’s always changing,” she said. “I’m always having to call up manufacturers to get updated listings, because ingredients change constantly.”
And there are few reliable, updated guides for new celiac sufferers, Matuson said.
In March, she started a blog that serves the dual purpose of documenting her family’s blueberry picking and moss planting and sharing the latest gluten-free products, from cereal to sunscreen.
Matuson’s blog, A Gluten-Free Vegan Mom Who Knows, has attracted nearly 300 Facebook fans and connected her to celiac sufferers nationwide.
http://www.facebook.com/pages/A-Gluten-Free-Vegan-Mom-Who-Knows/215379383817"> To see Priscilla's blog, A Gluten-Free Vegan Mom Who Knows, click here
“I started one half a dozen times ... but I decided I was going to commit this time,” she said. “I shared it with a couple friends online and got a positive response and just ran with it.”
Although it was a steep learning curve initially, Matuson said she has found gluten-free alternatives for most of her family’s favorite foods online and in health food stores.
“It was an evolution,” she said. “Before I had the information, I was doing the shopping, not knowing how to make different choices.”
Several times, Matuson said she tried shampoos that caused her hair to fall out or came across foods labeled “gluten-free” that were contaminated from being produced in the same facilities as gluten foods.
Two of the hardest items to find replacements for were almonds, which are often processed in factories that also process gluten-rich grains and nuts, and ice cream cones, which never have quite the same taste and texture as the real thing.
But the changes do not stop at the pantry.
Matuson said she initially sent her daughters to a preschool with other students. Despite the efforts of the school to switch to gluten-free crayons and toys, she said it quickly became apparent that it was not enough.
“Kids bring snacks with gluten, and then they play with a toy that my girls play with some time afterwards,” she said. “In preschool, they’re still very oral, so they’d get sick a lot.”
While her daughters attend a lot of birthday parties and events with children their own age, Matuson said she is very cautious.
“We usually leave before the cake comes out,” she said.
But the diagnosis also meant Matuson, a former high school English teacher, could make decisions that would have been controversial otherwise.
In addition to choosing to home-school her children until they reach elementary school age, Matuson said Sydney chose to follow a vegan diet, something a lot of parents would be wary of, she said.
“I’m used to getting a lot of criticism from people,” she said. “But they look at them and see how healthy they are. They’re both growing.”
All of the effort to keep gluten out of her home is worth it if her family remains healthy, Matuson said.
“For a celiac, a mere 12 exposures to gluten a year will increase the fatality risk by 600 percent,” she said. “These stats are my motivation to live the healthiest lifestyle I can, to prolong my life as much as possible.”
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