Fighting celiac disease a way of life
Illness now easier to diagnose
CAPITAL REGION When Sherry Lynn’s Gluten Free, a restaurant and grocery store that serves and sells only gluten-free food and beverages, first opened in 2007, owner Sherry Lynn Birch wasn’t sure what to expect.
“I wondered whether people would come,” Birch said. “I said, ‘Let’s give it a go and see what happens.’ ”
To her surprise, business was strong, and in 2009, Sherry Lynn’s moved from rural Rensselaer County to her current location on Troy-Schenectady Road in Latham.
“It’s getting busier and busier,” said Birch. “There are more people than I thought who need the same diet I do.”
Birch has celiac disease, an autoimmune condition with symptoms including diarrhea, anemia, fatigue, heartburn, irritable bowel syndrome, tingling of the hands and feet and bone pain. A genetic intolerance to gluten, a protein found in wheat, rye and barley, triggers the disease, causing the body’s immune system to attack and damage the small intestine.
The only treatment is a gluten-free diet, which in recent years has spurred grocery stores and restaurants to provide more gluten-free options.
“I am not going to get over celiac disease,” said Laurie Kielkowski, who co-owns Laurie’s Gluten-Free Goodness, a bakery in Scotia. “I’m going to be on a celiac diet my whole life.”
Just 10 years ago, celiac disease was relatively unknown. Lynn and others with the disease say that they spent years in physical misery, feeling sick and visiting countless doctors.
But in the past decade, awareness has risen sharply, as has the number of confirmed cases. More people are getting tested for the disease, thanks to an easier-to-administer blood test that became available about a decade ago. Previously, the only way to determine whether someone had celiac disease was a biopsy of the small intestine.
Birch was diagnosed when she was 30. For years, she had struggled with digestive problems, allergies, aches and exhaustion, but doctor after doctor was baffled.
“I felt like a circus act, like I was the only person on earth who had it,” Birch, now 40, said. “I literally felt like I was dying at 30 years old.”
Finally, Birch saw a doctor who asked her whether she had ever heard of celiac disease and administered a blood test, which came back positive. “It’s enough to bring you to tears, to find out that all these years you’ve been suffering and there’s actually a name for it,” she said. “Now it seems like almost everyone I talk to knows someone who has celiac disease.”
Nearly one of every 133 Americans suffer from celiac disease, according to a study by the University of Maryland Center for Celiac Research in Baltimore.
Packaged Facts, a food industry researcher based in Maryland, estimates that the U.S. market for gluten-free foods and beverages rose 30 percent, to $2.6 billion, between 2006 and 2010 and predicts that sales of gluten-free products will exceed $5 billion by 2015.
While most people who stop eating gluten do so out of necessity, “a growing number are gluten free by choice,” Packaged Food’s 2011 Gluten-Free Foods and Beverages report notes. Experts said that trendy, low-carb diets, as well as a growing number of celebrities and athletes who have been vocal about giving up gluten, are contributing to the public’s embrace of gluten-free products.
Maureen Murphy, manager of trends, nutrition and lifestyles for the Price Chopper supermarket chain, said that more people are eating gluten-free and that Price Chopper has tried to respond to this growing market. The company has a relationship with Elizabeth Barbone, a chef who specializes in gluten-free cooking, and sponsors gluten-free baking demonstrations. On May 16, Price Chopper will host a gluten-free food festival at Century House in Latham.
Within the past year, Price Chopper has introduced gluten-free shelf tags, which identify items with a GF label. Right now, about 1,600 of the chain’s products carry these labels.
Dr. Peter Green, who heads the Celiac Disease Center at Columbia University, said about 1 percent of the population has celiac disease, but only about 5 percent of those people have been diagnosed. This means the vast majority remain unaware that they have it.
“There’s an increasing rate of diagnosis in this country, but it’s still below 1 percent,” he said.
Green said research suggests celiac disease itself has become more common. Blood samples from 50 years ago show only 0.2 percent of people had celiac disease, which means that “celiac disease has increased four- to five-fold in the past 40 to 50 years,” he said.
The cause of this increase remains a mystery, Green said. One possibility is that gluten has become more toxic. “Gluten is becoming more processed,” he said. “In ancient grains, the gluten isn’t as toxic as it is now. Wheat has been developed to be more glutenous.”
Other factors include a lack of breast feeding and being born via Caesarian section, he said. “Maybe it’s related to our food,” he said. “We don’t eat seasonally anymore. Most of our food is transported. What do we do to it to keep it fresh?”
Green said allergies to gluten are also increasing.
Green and Mary Applegate, an associate dean at the School of Public Health at the University at Albany, both suggested that awareness of celiac disease among doctors is lagging and that pharmaceutical companies are partly responsible. Applegate noted that pharmaceutical companies often fund continuing education programs for doctors and the fact that there’s no drug for treating celiac disease explains the lack of interest in teaching doctors about it.
Range of symptoms
As the rate of diagnosis has increased, doctors have gotten a better sense of the range of symptoms linked to celiac disease, Applegate said. Once thought to primarily cause digestive issues such as chronic diarrhea, doctors now know that people with the disease are less able to absorb certain nutrients and that an iron deficiency is often the first sign of the disorder. Infertility can also be an early symptom of the disease, she said.
Applegate was diagnosed with celiac disease as a baby, around 1960. At the time, it was believed to be a disease of childhood, and children were told they would outgrow it. Adults who had trouble processing gluten were told they had a different disease, called sprue. So in adolescence, Applegate began eating food containing gluten again — “I was pronounced cured” — and by college, she often felt sick. In medical school, a doctor informed her that celiac disease and sprue were the same thing and that she would need to stick to a gluten-free diet for the rest of her life.
Applegate said most food is gluten-free and that it’s possible to develop a diet that basically eliminates bread, cakes and crackers. “Vegetables and fruit are gluten-free,” she said. “Most meat is gluten-free. You just adapt. But in the past 10 years, there’s been a complete revolution in the number of things that are available and how widely available they are.”
The Albany-based nonprofit organization the Celiac Disease Resource was founded in 1995, with the goal of raising awareness of celiac disease throughout the region and providing support and resources to people with the disease.
Schenectady resident Francine Fazio, the organization’s vice president, has celiac disease, as does her 21-year-old son and 13-year-old daughter, who suffered for years from severe headaches, stomachaches and vomiting.
“We’re Italian,” Fazio said. “On Sundays, we would have pasta, and my daughter would always be sick.” The daughter finally met with a pediatric gastroenterologist, who determined that she had celiac disease. It was this positive diagnosis that prompted the rest of the family to get tested, as celiac disease is genetic.
Fazio said food and drink options for people with celiac disease have expanded dramatically in the past five years but are still too expensive.
“The prices are so much higher,” Fazio said. “When money is tight, it’s hard to stay gluten-free.”
Fazio said restaurants have gotten better about providing gluten-free options, but too many still do not understand the dangers of “cross-contamination” — of using the same equipment to prepare gluten-free dishes that have been used to prepare dishes with gluten.
“You can’t share a toaster,” Fazio said. “You can’t share a colander.” She said that if a restaurant wants to be listed on the Celiac Disease Resource’s website as offering gluten-free food, members of the group visit and determine whether they are preparing gluten-free meals properly. She said a lot of people believe living gluten-free simply involves giving up bread, but “it’s a lot more than that.”
Birch said she opened Sherry Lynn’s to fill a need. Though it was becoming easier and easier to find gluten-free food, she still found it difficult to eat at restaurants.
“There were more and more products, but I couldn’t go anywhere,” Birch explained.
Kielkowski, owner of Laurie’s Gluten-Free Goodness, had the same experience. “Originally, I was going to bake one type of bread, a couple of muffins, a couple of cookies,” she said of the bakery she opened in 2009 in a 420-square-foot space. “I felt I could help other people,” she said.
A larger-than-expected market prompted her to expand her offerings — and her bakery. In January, she reopened in a 1,000-square-foot site. “I have a big following,” Kielkowski said. “People are trying my stuff and liking it.”
The Celiac Disease Resource website can be found at www.celiacresource.org.