Sliced Dread 

Gluten causes countless Americans crippling stomach pain. Why don't they know it?

Page 2 of 4

Not much has changed. Eliminating gluten from the diet was then, and still is, the only way to alleviate symptoms and reverse the intestinal damage.

If only it were that easy.

Gluten is everywhere. It's the mother of all fillers, lurking where you'd least expect: soups, salad dressings, soy sauce, marinades, candy, soy milk, beer, energy bars, processed lunch meats, imitation seafood, frozen dinners, prescription drugs, vitamins — not to mention nearly every starchy carbohydrate filling the aisles of your local Safeway. If they're not made with gluten, there's a good chance they were processed in the same facility, and thus are tainted with the offending protein. Avoiding it completely is next to impossible — especially when eating out.

Not that people aren't trying. On a Friday evening in July, Naren Wadhwani, 31, steps up to the counter at Cactus Taqueria. The popular Rockridge restaurant brims with the chatter and clatter of its usual customers — parents towing screaming kids, commuters fresh off BART. But this is Wadhwani's first time there, and he's a bit cautious.

He asks the counter person if the corn chips are fried in the same oil as any breaded products such as empanadas. He needs to know because even ingesting crumbs — which celiacs call being "glutenized" — can make him tired and give him stomach pain for days.

He deems them safe, then orders two carnitas tacos. From prior experience, he knows they're made exclusively with corn tortillas, which the server tells him are grilled, and not placed in the same steamer as the gluten-y flour tortillas used for burritos.

The bespectacled Wadhwani sits down at a table with four gluten-free women he's never met, including this reporter. All are noticeably thin. "Usually, I don't eat chips," he announces, his black T-shirt hanging on his lean, five-foot-eight-inch body.

"Whenever they come mass in a bag, I eat them," offers Laura Linden, who is seated next to him. If they're fried in a large batch, she figures, there's probably a dedicated fryer.

Although these chips aren't fried in anything else, Wadhwani says, "there's always that possibility of miscommunication."

"They'll tell you what you want to hear," Linden laments.

"Typically, I'll ask about spices — is it a mix or pre-made?" he says. "Some places in the Mission have MSG that can have gluten in it. Also, I'm allergic to food coloring. I have to be at the highest level of awareness."

"That sucks. That's a lot," says Patti Furey-Crane, owner of the gluten-free Mariposa Bakery, who is sitting across the table (See "Opportunity Gurgles," page 11).

"It could be worse," Wadhwani shrugs.

"It doesn't always feel that way, though," chimes redheaded Mary Fiala, a 47-year-old Oakland resident with a slight Arkansas drawl.

Discussing your disease with a group of strangers is standard fare for members of the SF Bay Area Celiac Disease Dinner Group, a Yahoo group Linden launched last fall after hearing about something similar in New York. "It's not like we have cancer or something like that," she later surmised. "But there are just all these peculiar things that a lot of us deal with." When they get together, the diners typically exchange information about what grocery stores or restaurants carry what gluten-free items. They also find camaraderie in shared symptoms. "You just kind of go, 'Did that happen to you? Because it seemed so mysterious at the time,'" she said.

Although awareness of celiac is increasing, patients still deal with the difficult reality of maintaining a gluten-free lifestyle. "It's two separate reactions," said Ellen Switkes, who was diagnosed more than twenty years ago and runs a celiac support group in Oakland. "They don't know how they're going to live; 'this is terrible,'" or "'I'm not dying.'"

The biggest concern, Switkes said, is how to eat outside of the controlled home environment: dinner parties, restaurants, and abroad. Even if you can avoid foods containing gluten, shared kitchen equipment is often contaminated. What's more, otherwise safe foods processed in the same facilities as wheat, rye, and barley can create problems for the gluten-free. Culling such information from waiters who tend to know little about actual ingredients can be daunting.

Even the celiac community is split over which foods are safe. "As a result we have several national support groups instead of one," Switkes said. "The attempts at providing a unified voice in the US have taken place, but it's still not good enough. It's a real problem."

Part of the problem lies in the fact that gluten isn't regulated. The federal Food and Drug Administration requires food companies to disclose eight allergens, including wheat, but not gluten. Officials, however, are working to determine how much gluten celiacs can safely ingest. With luck, labeling could start at the end of next year.

Some celiacs play it safe by never eating outside the home. Switkes thinks that's too restrictive. "You need to lead a normal life and figure out some ways to make this work for you," she said.

Linden hopes her dinner group will help make life easier for local celiacs. So far, the group — which has 44 members — has tried out four Bay Area restaurants. Although none caters specifically to celiacs, she hopes the group's presence will encourage restaurateurs to be more accommodating.

Until then, celiacs will have to fend for themselves and stomach society's misunderstandings. "People say you're too skinny. That's just as bad as saying you're too fat," Fiala laments back at the taqueria. She says she's been eating a lot of butter and ice cream, and has gained a few pounds. "It probably won't stay on, but it's still kinda fun. Look! I've got some body fat," she says, pinching a tiny roll on her tummy.

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