Palm Beach Post
Two million to 3 million Americans have it. Yet only about 100,000 know it.
The potentially fatal disease was described by Greeks a couple of thousand years back, yet it takes patients an average of 11 years to get a correct diagnosis.
And when they get that diagnosis, most are still baffled.
Celiac disease? What is that?
"I couldn't even pronounce it," recalls Delray Beach resident Phyllis Kessler. "What does this mean?"
Pronounced see-lee-ACK, it means Kessler's body balks at digesting gluten, a protein found in wheat, barley and rye.
And when even the smallest amount passes her lips, her immune system attacks the lining of her small intestine so that it can't absorb the nutrients from any of the foods she eats.
Some have described celiac disease as the Great Pretender пїЅ a disease that masquerades as a host of other illnesses with symptoms as varied as infertility and sinus headaches, diarrhea and osteoporosis.
A genetic disease, its consequences can be dire, putting its victims at seven times the risk for cancer over the regular population and at risk for developing disorders including diabetes, rheumatoid arthritis and lupus.
But lately, the pretender has begun to shed its cloak.
When Kessler, 53, was diagnosed six years ago, many doctors still considered celiac a rare childhood ailment.
Today, however, Kessler heads a countywide support group and gets dozens of calls a week from the newly diagnosed.
In 2003, the National Institutes of Health sponsored the first large American study to determine celiac's reach into the U.S. population. The conclusion after testing more than 13,000 blood samples: 1 in every 133 have it. Have a relative with it? Odds go up to 1 in 22. The NIH has begun a campaign to spread the word to doctors.
In the past year, celiac has made the rounds on public radio.
And, in a true sign of arrival on the cultural landscape: This spring, Gluten Free Living for Dummies hit the bookshelves. The author: Danna Korn, whose son was diagnosed with celiac in 1991.
Even ancient Greeks had it
As long as there has been bread, there has probably been celiac disease.
The ancient Greeks, who also detailed the ravages of epilepsy, describe malnourished children with scrawny limbs and distended bellies 2,000 years ago. They were eating and starving at once.
But it took wartime bread rationing for Dr. Willem Dicke to narrow the cause to gluten. In 1950, he noted that children with celiac, sometimes called sprue, improved when flour became scarce during and after World War II.
In the 1960s, researchers came up with biopsies that revealed that the disease destroyed the hairy lining of the small intestine that absorbs nutrients. In the following two decades, blood tests that could identify celiac-related antibodies made it easier to screen large numbers of people.
The NIH's 2003 finding that approximately 1 percent of the population has celiac corresponds with findings in most of Europe and Australia.
Yet the news took most U.S. doctors by surprise.
'Banana babies' for life
Fred Casson knew from family tales that he was a "banana baby." Born in 1950, his parents were told the toddler couldn't eat the standard kid fare. His dad had to go through the black market to get bananas for his meals, Casson recalled. He even knew the name for the disease: celiac.
But, like thousands of banana babies, Casson thought he outgrew the disease when he outgrew his highchair. He didn't even know what celiac was really, just that he'd had it as a child.
It didn't even come up in conversation when he was making the rounds of gastroenterologists in Boston in his 30s and 40s, desperately searching for relief from diarrhea, bloating and cramping.
It was only luck that Casson, now living in Delray Beach, mentioned the childhood diagnosis to a friend who recognized it for what it was and connected the dots to Casson's adult gastric agonies.
Casson's decades-long search for a diagnosis is not uncommon in the United States. A recent survey of celiac patients concluded they spent an average of 11 years investigating their symptoms before they were accurately diagnosed.
The problem?
"There's no money in it," says Dr. Peter H.R. Green, a professor of clinical medicine who conducted the study.
The treatment for celiac is a diet free of gluten пїЅ a simple and herculean task at once пїЅ but a chemical-free one for sure.
That means the pharmaceutical industry isn't throwing money at it.
And, because long ago some doctors decided it was a rare disease, there was no research into it and little word of it in school, said Green, who heads the Celiac Disease Center at Columbia University.
"It's mentioned in one lecture, which can be a fraction of an hour lecture in the second year of medical school," Green said.
Instead, many patients are misdiagnosed.
Rose Cruickshank, 58, a nurse living in Boca Raton, was told some 20 years ago that all her nervous stomachaches and bloating were due to irritable bowel syndrome пїЅ a name attached to nonspecific digestive problems once all other diagnoses are ruled out. She eventually developed tumors in her intestines, had surgery and chemotherapy. Still her body refused to absorb nutrients.
Her doctors chalked it up to major surgery and slow recovery. But after much research, Cruickshank suspected something else: celiac. She was right.
"So should I have gone through the cancer? Probably not," Cruickshank says.
She'd had other symptoms, but they were easily explained away.
Early osteoporosis (because her body wasn't absorbing the calcium). "But my mother had it."
She couldn't finish burgers. Pizza made her stomach ache. "I just thought that was how I was supposed to feel."
Many doctors unfamiliar
Other celiac patients report skeptical doctors.
Casson recalls one doctor telling him, "You're a Russian Jew. Russian Jews don't get celiac."
Celiac does have strong roots in Ireland and Italy. But as Casson can attest, Russian Jews are not exempt. "I called my cousin. She said not only did you have celiac, but your father probably had it. Your mom had it. There's three Russian Jews right there."
Because of its origins in Europe, the disease charted a different path there and in Australia, where Green was taught. There, too, about 1 percent of the population has celiac, but the diagnosis rate is closer to 30 percent rather than the 3 percent in the U.S.
In the 1980s, there was a celiac epidemic in Sweden among children, Green said. Doctors traced the spike to a lack of breast-feeding and lots of gluten in the formula. A campaign to boost nursing and eliminate gluten worked.
Breast-feeding, it turns out, is the one measure proven to prevent or at least curb the disease's development.
When doctors such as Green and Alessio Fasano, who conducted the NIH study, came to the United States, they were stunned by the ignorance surrounding the disease and began to push for studies and education. While they agree that much has changed in the past five years, there's still plenty to learn.
When 65-year-old Len Handel checked into St. Mary's Medical Center after a bicycling accident, he said he needed a special diet because he had celiac.
"One morning I got my gluten-free egg... with a muffin sitting on top of it," said Handel, of West Palm Beach.
Perhaps more daunting is the fact that for every person who has searched for years to learn why they weren't gaining weight, why their tummies ached or why they convulsed after ingesting the tiniest bit of gluten, there are equal numbers who don't have any symptoms пїЅ or don't think they do.
Kessler, for example, felt fine.
"I went through my whole life eating whatever I wanted to," Kessler said.
Then she was hit by a virus she just couldn't shake. Blood tests revealed the disease.
Like mother, like daughter
And when she turned out to have it, she followed common celiac advice: Have all your first-degree relatives tested as well.
Viola, her daughter, 22 at the time, had it too. And not one symptom.
The good news is that once someone is diagnosed with celiac, the disease can be controlled with a strict diet.
The bad news is gluten is everywhere.
Grains are so common in our diet that gluten is second only to sugar as the most commonly consumed ingredient.
Naturally, gluten fills breads and beers, pastas and pastries. But it also hides in some soy sauce, malt vinegars, ice creams. It's in gravies and marinades.
"You have to be a detective," said Kessler, describing hours on the Internet and dialing 1-800 lines to food manufacturers.
"I have found a substitute for almost everything. But what I miss the most, I miss the spontaneity of eating on the run. I can't be in the mall and eat a slice of pizza. I've got to plan every given moment."
But Kessler is thankful, nonetheless.
Biopsies showed that both her and her daughter's intestinal linings were flat, like a matted shag carpet.
"That means I was a prime candidate for stomach cancer. Which means for me, celiac was a silent, deadly disease," Kessler said. "So in a way, I was lucky."
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