Her father was superintendent at the mill, and would come home covered in flour, toting free bread from the test lab every day. He was also plagued by migraines and other signs of illness for all the years he spent in the business of producing flour. “He was breathing it, touching it, it was his whole world and he was sick all the time.”
Photo by Sarah Elmquist
Wearing her heart on her…arm
And about five years ago, she got sick too. Retired Judge Margaret Shaw Johnson found herself so weak she couldn’t walk across a building without sitting down. She had migraines, joint pain, trouble eating and sleeping. “I had to lay down between hearings,” she said. “It was really bad, I lost 40 pounds in the first year. I was just continuing to deteriorate and I could not figure out what was wrong with me.”
Nearly two years passed before Johnson, after each medical test was a crisis until a negative result was reached, found an answer. She, like a growing number of Americans, was diagnosed with celiac disease, a genetic autoimmune disorder that causes the lining of the small intestine to be damaged from gluten and other proteins found in wheat, barley, rye and possibly oats. And because the symptoms may vary widely, many with the disease, which may present itself later on in life, are misdiagnosed or may undergo years of testing before finding the root cause of their illness.
Dr. Karen Vrchota, of Integrative Health Care of Winona, works with many patients suffering from celiac disease, or some sensitivity to gluten. She works to diagnose people with food sensitivities and nutritional deficiencies that might contribute to illness, specializing in chronic fatigue syndrome. She’s seen symptoms of gluten sensitivity and celiac disease that range from chronic fatigue to headaches, sore throats and skin rashes. She said that it’s not always easy for a person to get off the gluten.
Because gluten and casein (milk protein) bind with endorphins — chemicals in the brain that produce feelings of euphoria — they can be pretty hard to quit eating, said Vrchota. “When people say they love bread, they love it like a heroin addict loves heroin,” she said. People can actually experience symptoms like withdrawal for a few days when they cut out gluten, and for many it can take months before they really start feeling better.
Diagnosis can be difficult and take years. Take Bonita Sarazin, who was misdiagnosed for years, was seen by a variety of doctors and even found herself being observed at a sleep clinic before the real problem was rooted out. And Jennifer Bender, who spent months being poked and prodded as a teenager with celiac disease, only diagnosed after a biopsy of her intestines discovered her problems with gluten.
“People have seen an average of 14 doctors before they come to see me,” said Vrchota, “and I’m booked out for six months.”
While it may seem as though more and more people have discovered either a sensitivity to gluten or full blown celiac disease, researchers disagree about whether that is due to more cases of the disease, or more folks successfully diagnosed. Officially, about one percent of the U.S. population is estimated to have celiac disease, and only one percent of those has been diagnosed. Vrchota said she believes that there may well be closer to 10 percent of the population that has some form of celiac disease. And a mere 20 percent of those who carry the genes for the disease actually produce digestive symptoms.
Life after pizza
Many people who do not eat gluten say they aren’t very impressed with packaged products meant to mimic bready foods, preferring to stick with food products that aren’t trying to pose as leavened, floured items.
But life with celiac disease is complicated, even when a person is just looking for some old fashioned meat and potatoes. “I definitely don’t do the going out to eat thing,” said Bender. “It’s just too risky.”
And while many gluten-free folks find success eating at restaurants, the chance for cross contamination keeps non-gluten eaters on their toes. Even an egg fried on the same skillet where a bun was toasted, items fried in oil that previously cooked breaded products, can cause extreme sickness, and even the most careful, diligent gluten-free connoisseur will still from time to time accidentally consume the stuff.
“Anytime you eat out you’re at risk for exposure,” said Vrchota. “I think people shouldn’t be shy in asking a cook to clean the grill before they cook their meat. Cooks need to be educated about cross-contamination.”
Johnson agreed. “You have to be really, really careful,” she said. “The first month, for me, was very difficult because I kept making mistakes. For example, I was doing everything I could and I still was not well, I wasn’t getting better. Then I discovered that the toothpaste I was using had gluten in it. It’s very insidious.”
The only real cure for celiac disease is to live gluten-free lifelong. And those with the disease will tell you — once they got into the diet, they would never eat gluten intentionally again. It’s not worth getting sick.
Johnson, who suspects that not only her father, but his father and grandfather too, suffered from the disease, said she doesn’t miss gluten at all. Not anymore, she says.
Pizza is on the lips of most non-gluten eaters as one food, although it can be imitated, that they miss. But it’s more than pepperoni on a stretchy crust, really. “It’s the carefree part of eating that I miss,” said Bender. “It’s just a natural thing to eat, and to have to put so much thought and concern into it is like having to think to breathe.”