Open your pantry or refrigerator, and chances are, it's in there.

It's likely lurking in your bag of bread, your box of cereal and your bottle of beer.

It might be in your salad dressing, soup cans, cold cuts and ice cream.

"It" is gluten, a protein found in rye, wheat and barley, as well as in shopping carts full of processed foods.

For most of us, gluten is harmless. But for an unlucky minority - a minority not nearly as small as recently thought - this pervasive protein is poison.

These are the people with celiac disease, a digestive disorder triggered by gluten. The protein wreaks havoc in their small intestines, essentially blocking the body from properly absorbing food and nutrients. The result can be any one of an unlikely assortment of symptoms and conditions, from diarrhea and fatigue to osteoporosis, migraines, infertility and cancer.

Celiac experts say the disease goes widely undiagnosed in this country, despite its relatively high prevalence.

A landmark study published earlier this year in the journal Archives of Internal Medicine found that one out of 133 people in the United States has celiac disease. That's enough celiacs to fill Wrigley Field 56 times. Yet only about one in 4,700 Americans has been diagnosed, meaning 97 percent of cases in this country are going undetected.

"When this disease is diagnosed and treated early we can prevent complications," said Dr. Stefano Guandalini, professor of pediatrics and director of the University of Chicago's celiac disease program. "But there is so little awareness of celiac disease in this country, even among physicians, that we often see people only after they develop severe problems.

"For a disease that can usually be treated effectively with a modified diet, that's a horrible waste."

Wasting away

For six months, Ed Wehling of St. Charles suffered daily diarrhea. His 6-foot, 2-inch frame held a mere 140 pounds. Weakness and fatigue hounded him.

Wehling's doctor prescribed a medication to stop the diarrhea. It didn't work.

He underwent a battery of tests, searching for culprits from parasites to cancer. They turned up nothing.

His internist gave up and sent him to a gastroenterologist, who also was stumped. Finally, the specialist did a biopsy of Wehling's small bowel. It showed he had celiac disease, a disorder first identified around World War II. That's when physicians noticed that sick Dutch children regained their health when the Nazis shut off the grain supply. Once the grain was reintroduced, the kids fell ill again.

Wehling immediately had to give up anything containing gluten - a list that turned out to be far longer than he ever imagined.

The diarrhea stopped immediately. After one month, he'd put on 10 pounds and started to get his energy back.

"I asked the doctor what would've happened if I didn't get the diagnosis," said Wehling, who's now 54 years old. "He said I probably would've died. I would've wasted away."

To be diagnosed, patients start out getting a series of blood tests called a "celiac panel." It costs about $80 and measures the immune system's response to gluten by looking for certain antibodies. If the results are positive, a small bowel biopsy is needed to confirm the diagnosis. Doctors do this by sedating a patient and inserting a long, thin tube down the throat and into the small intestine, where there are no nerve endings so the patient feels no pain.

The tissue samples are examined under a microscope, looking for damage to the so-called villi, or long, hair-like projections that line the surface of the small intestine and absorb nutrients. When celiacs eat gluten, it sparks an autoimmune reaction that breaks the tips off these villi.

"I tell my patients it goes from shag carpet to flat linoleum," said Dr. Cynthia Rudert, an Atlanta gastroenterologist who serves as medical adviser for the Celiac Disease Foundation and the Gluten Intolerance Group. "But on a gluten-free diet, those villi can come back completely in at least 95 percent of people."

It's in the genes

Genetics plays a big part in celiac disease. Roughly one-third of Americans have the DNA that makes them susceptible to the illness.

A new blood test from Prometheus Laboratories can tell if you're that one in three. It costs $440, requires a doctor's order, and became commercially available this spring. But simply having the right genetic makeup doesn't guarantee celiac disease.

"I look at it like a lock and a key," Rudert said. "Your lock is your genetic predisposition. The key has to turn it on. That key can be stress, surgery, an infection, overuse of antibiotics, the postpartum period, an overindulgence in gluten - these are just some of the possible triggers."

Wehling thinks stress triggered his symptoms 18 years ago. He had a new job and a new baby, and it all felt a little overwhelming.

"I'm just lucky I was diagnosed so quickly," said Wehling, who was 36 years old at the time. "That doesn't happen for many celiacs."

A survey published in 2001 in the American Journal of Gastroenterology found that the time between onset of symptoms and a confirmed celiac diagnosis averaged 11 years in the United States.

There's mounting evidence that this kind of delay can increase a celiac's risk of developing another autoimmune disorder, such as type 1 diabetes, thyroid problems, rheumatoid arthritis or lupus. And it gives the disease plenty of time to do other damage, like cause osteoporosis, night blindness or infertility.

"In Europe, it typically takes a few weeks to go from the first symptoms to a diagnosis," said Guandalini, who trained in Italy.

There's no shortage of theories as to why the United States lags so far behind other parts of the world when it comes to spotting celiac disease.

For one thing, many physicians in this country mistakenly believe celiac is as unusual as a Cubs World Series appearance - a notion turned on its head by the recent study analyzing blood samples from more than 13,000 adults and children in 32 states.

Researchers found that one in 133 of the general population is a celiac, and many of them don't even have noticeable symptoms. It's generally thought that even asymptomatic celiacs should stick to a gluten-free diet.

They also discovered that the prevalence of celiac disease was far higher for those considered "at risk." One out of 22 people with a first-degree relative with celiac has the disease, and one of 56 people with symptoms but no diagnosed relative has it, according to the study.

"That's big, big news to the medical community," Rudert said. "This was thought to be a rare disorder. And if you're not looking for something, you certainly won't find it."

Another reason the disease flies under the radar in the United States can be chalked up to symptoms, which can look quite different between American and European celiacs, Guandalini said.

Europeans tend to have more of the classic gastrointestinal symptoms, such as diarrhea, while Americans often exhibit seemingly unrelated symptoms: fatigue, joint pain, anemia. They might not have any gastrointestinal distress at all - at least not initially. Guandalini speculated that this might have something to do with American babies getting more breast milk than their continental counterparts.

"It's a very chameleon-like disorder, presenting differently in different individuals," Rudert said. "The only common symptom that's shared by virtually all my patients - and I'm following over 300 celiacs - is fatigue."

Rudert suspects that many people are "hidden" celiacs, walking around with diagnoses like irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome when their problems truly stem from gluten intolerance.

"All they'd need is a change in diet," she said.

And that's another reason some suspect celiac diagnoses aren't handed out too often in this country: the solution doesn't rest on a pharmacy shelf.

"Drug companies have no reason to talk about our disease," Wehling said, "because all you have to do is stop eating the wrong food."

Watch what you eat

Eating the wrong food is something celiacs constantly have to guard against.

That's not always easy, given that food manufacturers don't have to say "gluten" on their labels. The protein has plenty of aliases, going by names such as "modified food starch" or "brown rice syrup."

"You really have to start reading labels closely," said Peggy Wagener, a Northbrook woman who was diagnosed with celiac disease six years ago.

Wagener lived a decade with her symptoms - fatigue, gastrointestinal woes, trouble sleeping, foggy thinking - until she was deemed a celiac.

Finally getting a diagnosis came as a huge relief, she said. After all, she'd already survived skin cancer. If the only thing she needed to do to feel better was change her diet, she figured that would be a piece of cake - albeit gluten-free cake.

"I was happy until I left the doctor's office, went to lunch and realized there was nothing for me to eat," Wagener said.

Wagener's experience prompted her to start a magazine devoted to people like herself, whose health depends on what they do and don't put in their mouths. The quarterly publication, called Living Without, includes recipes aimed at people who can't tolerate certain foods.

"So many wonderful products are coming out that are gluten-free," Wagener said. "Food manufacturers are finally responding and so are restaurants."

Going out to eat used to be an exercise in frustration for Wagener. Now, she frequents the likes of Flat Top Grill, where she can pick each ingredient that goes into her dish, and P.F. Chang's China Bistro, which offers a gluten-free menu.

Wagener still has to navigate her way around plenty of potential landmines on most restaurants' menus. She recently went to a pancake house and was about to order an omelet before finding out the cook adds a little pancake batter to make the omelets extra fluffy.

"You're usually not thinking wheat when you order an omelet," she said. "That would have made me really sick."

Now that Wagener knows exactly what she can and cannot eat, her biggest food-related concern is one that most of us can relate to: weight gain.

"Now I actually have to watch my weight," she said, "because my body finally is functioning properly."

University of Chicago Celiac Disease Program
Celiac Disease Foundation
Celiac Sprue Association
Gluten-Free Pantry
Living Without Magazine

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