MADISON — Carol Lashua woke up one morning with pain beneath her breastbone. The discomfort persisted for weeks, sometimes radiating throughout her gut, no matter what she ate.
She suspected a gallbladder problem, but her doctor gave her a different diagnosis: celiac disease, an autoimmune disorder that damages the small intestine when people eat gluten, a protein in wheat, rye, barley and many processed foods.
“It came out of the blue,” said Lashua, 52, of Madison, who has been on a gluten-free diet since her diagnosis in 2012.
She cried when she first read the list of foods she’d have to give up. Now she and her husband, Jon, enjoy cooking brown-rice spaghetti, gluten-free casseroles and chicken strips with rice-flour batter.
“It’s not the end of the world,” she said. “We’re really not lacking for anything.”
Celiac disease, identified many decades ago, burst into the public consciousness in recent years. The condition is four times more common than 60 years ago, Mayo Clinic researchers found, but there’s no clear explanation for the increase.
Up to 3 million Americans, or perhaps one in 100, are thought to have celiac disease — but three-fourths of them don’t know it, a Mayo study found.
Meanwhile, the gluten-free diet that is the main treatment for celiac disease has become a $4 billion industry, according to research company Packaged Facts. Some 1.6 million Americans eat gluten free, though 80 percent of them don’t have a diagnosis of celiac disease, Mayo researchers found.
Celebrities tout health and weight-loss qualities of gluten-free foods. But experts say there’s no evidence of such benefits, and they warn that gluten-free products can contain more calories and fewer nutrients than other foods.
“This is not a diet for everyone,” said Dr. John Williams, a gastroenterologist at UW Health. “It is only a diet for people with celiac disease.”
A recently recognized condition, non-celiac gluten sensitivity, has complicated the discussion.
Celiac disease is diagnosed through a blood test and a biopsy of the small intestine. The blood test checks for harmful antibodies.
The biopsy, taken with a tube down the mouth, looks for damage to the villi, hair-like projections that line the intestine. In healthy people, villi give the lining the look of a shag carpet. In people with untreated celiac disease, the lining looks like a tile floor, making it hard for the body to absorb nutrients.
People with non-celiac gluten sensitivity have negative test results but feel better when they don’t eat gluten. Experts say they might be reacting to gluten in other ways. It’s also possible some might be intolerant to other carbohydrates, Williams said, and the culprit is sometimes identified by eliminating carbohydrates and re-introducing them one at a time.
Dr. Gary Griglione, a gastroenterologist at Meriter Health Services, said people who feel better on a gluten-free diet should follow it, even if they don’t have celiac disease.
“If they feel it’s helping them, I encourage them to stay on it,” Griglione said.
Feeling better without gluten
At a recent meeting of the Madison Area Gluten Intolerance Chapter, or MAGIC, about 25 people gathered to discuss gluten-free living. The group is known for its website, glutenfreemadison.org, which lists gluten-free-friendly restaurants and bakeries.
Many members, like Rachelle Stoutt, of Fitchburg, have been diagnosed with celiac disease. She’s in a study at UW Health of an experimental powder, mixed with food, that could protect people with celiac disease against accidental exposure to foods containing gluten.
“I’ve been thrilled,” Stoutt said. “My immune system feels so strong.”
Cynda Solberg, president of MAGIC, said she believes she has celiac disease, despite a negative blood test and a biopsy that showed a slight indication of the condition, which some medical professionals consider inconclusive.
“Once I went gluten free, most of my stomach problems went away,” said Solberg, a Dane County supervisor from Cottage Grove. “There’s no way I don’t have it.”
Penny Coffin, a longtime MAGIC member who said she was diagnosed with celiac disease 50 years ago, said it’s much easier avoiding gluten today than when she started.
“The food service people are getting smarter about it,” said Coffin, of Monona.
There still are challenges, however, said Harriet McGaffin, diagnosed with celiac disease a year ago. Some gluten-free products just don’t taste like the real thing, she said.
“The worst is the bread and the desserts,” said McGaffin, of Sun Prairie.
The main speakers at the MAGIC meeting were from Paleovation, a Madison company that helps people eliminate a wide range of potentially troublesome foods from their diet. The “paleo diet” is different from what most people with celiac disease follow.
After the Paleovation presentation, MAGIC members talked about gluten-free beer, new gluten-free Girl Scout cookies and upcoming gluten-free cooking classes at Madison Area Technical College.
One woman asked for tips for travel in Italy. Another said she uses gluten-free moisturizer and shampoo, which generated debate over whether gluten absorbed through the skin is a problem for people with celiac disease.
The parents of a 10-year-old boy recently diagnosed with celiac disease drove an hour to attend their first meeting. They learned about ROCK (Raising Our Celiac Kids), a national group with a Twin Cities chapter that runs a summer camp in Minnesota for children with the condition.
Finding new favorite foods
Lashua hasn’t become involved with MAGIC. She said she finds support from Jon, her husband who does most of the family’s cooking, and her co-workers at CUNA Mutual Group, who sometimes bring her gluten-free treats.
She eats lettuce wraps, instead of sandwiches, for lunch. She or Jon make homemade creamed soups to use in casseroles, avoiding canned soups that typically contain gluten. They bake muffins, cookies and other goods with gluten-free flour.
Jon, who doesn’t have celiac disease or gluten sensitivity, said he has come to prefer rice flour to wheat flour on chicken strips. “It lets the flavors come through better,” he said.
Their 16-year-old daughter, Emily, is fine with the family’s gluten-free diet, with one exception: “The only thing I don’t like is the spaghetti,” she said.
Carol said she can still get her “pizza fix” by making gluten-free crust or ordering from places such as Glass Nickel, where she pays extra for pizza without gluten.
Other restaurants, like Nitty Gritty and Red Robin, have gluten-free buns for hamburgers, also for an extra fee, she said.
“It just takes a little more thinking and being careful,” she said.
There aren’t any foods she misses, she said. But after a pause, she issued a correction.
“I do miss having a doughnut once in a while,” she said.