Imagine this: Your doctor has just told you that you can never eat wheat, barley or rye again. You have celiac disease, meaning your body cannot tolerate the gluten found in these grains — a protein that gives baked goods their spongy, springy character and that is used ubiquitously in processed foods as a binding agent and texture enhancer.

For Ken Love, of Captain Cook on the Big Island, the reaction to this news was relief; he'd been so ill for six months that he couldn't work or even drive a car. Having a diagnosis at last meant he was on the road to recovery and at that point, even having to give up saimin and pizza didn't sound so bad.

For chef Carol Nardello of the Sub-Zero Wolf demonstration kitchen in Honolulu, the reaction was a bit more complicated. What can I eat?, she wondered. And how can I do my job — which involves recipe development and cooking for others?

Though little understood by the general population, celiac disease, an auto-immune condition in which the lining of the small intestine is damaged so that food cannot be properly digested, appears to be a widespread problem. A 2003 study estimated that one in every 133 people in the U.S. had celiac disease. The incidence in Hawai'i is less likely because the disease occurs in smaller numbers in Asians and Pacific islanders than in Caucasians. But many believe that diagnosed celiac sufferers are the tip of the iceberg; that many others suffer from gluten sensitivity and are on their way to celiac disease without knowing it.

"My theory is it's a disease of civilization because it's peculiar to people of northern ancestry, and we are the ones who became most affluent first and after World War II started eating fast food and TV dinners and modified starches and all those things that came out in the '50s, and now we're paying the price," said Love.

When you learn that gluten is found not just in the foods you would expect — baked goods and such — but in virtually all boxed, packaged and canned foods, you see how a diagnosis of celiac disease can complicate a life.

"I get sick from paying bills," said Love, a farmer, teacher and agricultural activist. He's not kidding. There's gluten in the glue on envelopes. If he licks more than a couple, his symptoms reoccur. He is so gluten-sensitive, in fact, that he can't kiss his wife if she's been eating a sandwich made with conventional bread.

EDIBLE MINEFIELD

Nardello's case is much milder; she can still taste a gluten-containing dish that she's preparing — but she takes no more than a taste. She recalls that her doctor comforted her with the thought that, if she had to have celiac disease, she was in the right place: a rice culture, where rice noodles and rice paper wrappers and rice flour are readily available.

She also notes that things are easier for celiacs now because foods are required to be labeled and the labels are much clearer. Love notes, however, that you have to know what the words on the label mean. For example, if it says "hydrolyzed vegetable protein," that can mean wheat.

Love and Nardello, like other celiacs, have spent the time since their diagnoses learning that gluten is everywhere — even in oats and cornmeal. That's because many of the facilities that process wheat also process these other grains, which become contaminated with wheat dust.

Gluten is also in shoyu. It's in most soba noodles, even though the label says buckwheat. It's in many vitamins, cold pills and painkillers. It's in most corn tortillas. It's in tomato sauce and mayonnaise and almost every prepared salad dressing. It's in the oil in which any wheat-containing food was fried.

"You spend a lot of time on the phone calling manufacturers to find out what's in their products," said Love.

You also spend a lot of money: gluten-free products often cost twice or three times what the conventional counterparts cost.

Love, who went to culinary school in Japan and travels there often, jokes that in his 20s, he had sake bottles with his name on them all over Japan (bottle-keeping is a common practice in restaurants there). In his 40s, he had shochu. Now he's got wheat-free soy sauce. When he travels home, his suitcase is filled with wheat-free soba noodles, pure rice miso, katakuri potato starch and other gluten-free ingredients he can't find here.

'OK, I CAN DO THIS'

Both Love and Nardello have come to terms with their disease, however.

"At first, you feel overwhelmed, you feel depressed," Nardello said. "But eventually, you have to realize you have a choice. You can sit there and say woe is me or you can learn how to do what you need to do."

And that usually means learning how to cook wheat-free at home, because, for celiacs, restaurants can be tricky and even dangerous territory. While Nardello says she's found restaurants to be sensitive and accommodating, the staff doesn't always know where gluten may be hiding. Love wanted to order a yogurt salad the other day, but it turned out the walnuts were coated with wheat. "Why do they do that?" he asked, plaintively. It's a sentiment every celiac can share.

Nardello has learned to use a blend of rice, soy and potato starch flour to make baked goods. She bakes her quiche with a grated potato crust instead of conventional pastry. She puts her favorite Tuscan-style sauces on rice noodles, kicking up the flavorings to mask the taste of the noodles.

It takes, she said, "a lot of trial and error," learning the right proportion to use with the various flours; learning how not to turn rice noodles into a gluey, sticky mess; learning how to read a label and which stores and mail-order sources have the best ingredients.

And the tough truth is, Nardello said, "once you start experimenting, you know you'll never, never replace that same texture and flavor (in baked goods). Whatever you do is going to be a compromise. But once I found something that worked, which was my banana bread, I thought, 'OK, I can do this, I can keep going.' "

Reach Wanda A. Adams at wadams@honoluluadvertiser.com.