Fifteen years ago, Donna Kasper burst into tears in the soup aisle of a grocery store. Kasper was surrounded by food, but she could not find anything to eat.
For Kasper, bread, pasta and other seemingly innocuous food staples, such as canned soup, are poison.
Kasper has celiac disease, a disorder that causes her body to treat the gluten protein found in these foods as a toxin. For people with celiac disease, gluten triggers the immune system to produce antibodies that attack the intestinal lining.
Over time, the gluten-fighting antibodies damage the villi, the tiny, finger-like protrusions that line the intestines, preventing the body from absorbing nutrients. Long-term, celiac leads to a constant state of malnutrition that makes sufferers susceptible to osteoporosis and infertility and increases their risk for other autoimmune diseases.
Managing celiac disease requires a strict diet free of wheat, barley and rye. It is not enough to steer clear of the bread aisle. More than 100 common ingredients are derived from gluten-containing grains and can be found in numerous processed foods.
Today, finding gluten-free alternatives is easier than it was when Kasper was diagnosed 15 years ago, but foods specifically formulated to be gluten-free tend to be more expensive because there is no simple substitution for regular flour. In some recipes, as many as eight ingredients are needed to serve the same purpose.
"When you're using enriched wheat flour, it's an all-purpose flour," Kasper said. "We don't have an all-purpose flour. If you just used rice flour, whatever you were cooking would go flat because it doesn't have a leavening agent in it."
For months after her diagnosis, Kasper felt depressed and isolated. At the time, few resources existed for people with celiac disease.
“One day you’re eating gluten, and the next day, you’re not eating gluten at all,” Kasper said. “It’s not something you gradually go off of. These are all your comfort foods.”
A difficult diagnosis
Kasper, 44, jokes that celiac disease is the best thing that ever happened to her. Before being diagnosed, she didn’t know how to cook. Now, she prepares dishes such as rice spaghetti with homemade meat sauce and focuses on what she calls “gluten-free gourmet.”
The gluten-free diet is not easy, Kasper said, but it beats the alternative. She spent most of her childhood undernourished and in constant abdominal pain.
“I don’t remember a time when I wasn’t symptomatic,” she said. “At 7 years old, I was 30 pounds. They had to do exploratory surgery. They prepared my parents for my dying. We lived in Florida at the time, and they said, ‘We think you need to get her out of here. We think she’s allergic to herself.’ That’s the diagnosis I got.”
Kasper’s family relocated to Colorado, but her health did not improve. She remembers crying in the back seat on the way home from restaurants because her stomach pain was so unbearable.
When Kasper was growing up in the 1970s, celiac was a little-known disease. Kasper spent years looking for answers. At 28, she weighed only 89 pounds. People asked if she had anorexia. She tried in vain to convince her doctor she wanted to eat, but everything she tried made her sick.
“He (the doctor) was still trying to convince my husband this was all in my head,” said Kasper. Finally, the doctor ordered an endoscope, and a biopsy of Kasper’s bowel revealed celiac disease.
Finding a friend
Once Kasper realized no one else was going to manage her disease, she took charge. She bought a cookbook of gluten-free recipes, which provided her with lists of safe and unsafe foods. Armed with information, she scrutinized every label in the supermarket. She would spend hours at the grocery store reading labels, and her health slowly improved.
Over time, a gluten-free diet can heal the villi. But while most people see results in a few months, Kasper’s villi were so damaged she did not see any improvement for a year.
Eventually, Kasper grew accustomed to reading labels and checking ingredients. At a church potluck in 1998, she posed a routine question to find out if a dish was gluten-free.
Kasper discovered she was not the only one asking. Despite having known Lisa Earleywine for months, she did not know her friend also had celiac disease. Much to the chagrin of others at the table, the two spent the rest of the evening talking about gluten-free products, grains and recipes primarily of interest to people with celiac disease.
Earleywine had also struggled to get diagnosed. Her doctor had been unable to pinpoint the cause of her chronic gastrointestinal pain and iron deficiency, but her dermatologist identified a rash she had been experiencing as dermatitis herpetiformis, a symptom of celiac disease. He told Earleywine to discuss celiac with her physician, who dismissed the possibility.
“She actually said, ‘If you want to try the diet, feel free, but there’s no way you have this. You would be real skinny,’” Earleywine said. Though she was active and of average weight, her symptoms left her convinced that she had celiac disease.
“With celiac, there’s just this sense you’re not at rest in your skin," she said. "And whenever I eliminated the gluten, I just felt peaceful and comfortable.”
Her rash went away and her symptoms disappeared. Because celiac is hereditary, Earleywine urged her family to get tested. When her father and sister were diagnosed, she knew she had been right.
“Pretty darn common”
While Earleywine and Kasper both experienced some form of gastrointestinal pain, other celiac patients have seemingly unrelated symptoms. Fatigue, migraines and infertility can also indicate gluten intolerance. Some people don’t have any symptoms but test positive for the antibody.
The multitude and range of symptoms is why physicians often miss celiac disease, according to Peter J. Cleavinger, a gastroenterologist at Boone Hospital Center.
“It’s difficult enough to get gastroenterologists educated, but getting primary care doctors or obstetricians or neurologists? It’s almost impossible,” Cleavinger said.
As late as the 1990s, medical schools in the United States taught that gluten-intolerence affected about one in 1,000 people. Today gastroenterologists think as many as one in 100 people are gluten-intolerant. In fact, Cleavinger said, celiac disease is “pretty darn common.”
“The frustrating thing in Columbia is with all these medical doctors, it still takes the average person approximately three years to get diagnosed,” Kasper said. “Here we have the University of Missouri, and we’re missing it still. I just find that appalling.”
Cleavinger considers himself a fairly “black and white” doctor, but he cannot explain why some patients test negative for the antibodies that indicate celiac disease but still benefit from a gluten-free diet.
The bottom line, he said, is if a patient feels better on a gluten-free diet, then he or she should follow one regardless of diagnosis.
Keeping kids healthy
Kasper has her 10-year-old daughter Allyson checking labels, and it’s not so she has an extra pair of eyes at the grocery store. Allyson was diagnosed with celiac disease two years ago.
When Allyson began complaining of regular stomach pain, her blood work was inconclusive. But Kasper did not want to subject her daughter to an endoscopy, so she asked Cleavinger if there was another option.
Cleavinger said to put Allyson on a gluten-heavy diet for a week and see if she could stand it.
After three days, Allyson could not tolerate it. Kasper has kept her daughter on a gluten-free diet ever since.
Earleywine started both of her children on the gluten-free diet as infants. She took her son Connor off the diet when he was 2 to see if he could tolerate gluten. Connor, now 4, hasn't shown symptoms yet, but his mother plans to continue monitoring his antibody levels with yearly blood tests.
She recently removed her 2-year-old daughter from the diet as well and has similar plans to monitor the girl’s progress after the diet change.
The Celiac Disease Foundation estimates that at least one in 20 children with a celiac parent will also have the disease. Because blood tests can be inconclusive in young children, many parents prefer to have their children genetically tested.
About 95 percent of people with celiac disease carry a certain type of gene. Many people without celiac also carry one of those genes, so genetic testing can't confirm a diagnosis of celiac disease. A child who tests negative, however, almost certainly won't develop celiac.
“As a parent, we want to know if they even carry the gene,” Kasper said. “There’s a possibility they don’t, and if so, we pretty much don’t have to worry about them ever having this disease.”
When insurance companies refuse to pay for the genetic test, peace of mind can cost $500 out of pocket.
“You’re not a victim”
Having celiac disease is never easy, but in Columbia, Cleavinger and other doctors refer their newly-diagnosed patients to Kasper. Having a network of support gives celiac patients a place to go for advice and lets them know they are not alone.
Almost anything can be made gluten-free. The first thing Kasper asks new patients is what they are craving. She makes it her mission to make satisfying that craving a possibility.
“I don’t care what it is,” Kasper said. “Sometimes it’s just knowing, ‘I can,’ not, ‘I cannot.’ The world is mostly 'cans.' It’s just learning how to do the diet.”
Columbia also has a support group for celiacs that meets every other month. Kasper, unsurprisingly, is involved.
At University Hospital, medical students learn about celiac disease, but diagnosis is still difficult, said Wilson P. Pais, a gastroenterologist at University Hospital. Since 2000, the dialogue about celiac has changed. Now, new doctors are learning how common the disease is and to test for celiac when patients have unusual symptoms.
Cleavinger said celiac remains a “patient-driven” diagnosis. It is up to patients, he said, to establish a dialogue with their doctors if they have symptoms that indicate celiac.
Kasper encourages anyone experiencing unique symptoms and chronic gastrointestinal pain to get tested for the disease. Men, she said, are often silent sufferers, while women are more likely to get tested.
But there’s no reason why anyone should have to suffer, she said.
“You’re not a victim of this disease. There’s hope. There are really good foods. There are people who can help you.”