Food allergy sufferers find socializing tricky

Both have severe food allergies, and before they eat any meal outside their home, they typically grill their server about the exact ingredients in a dish, down to what's on the label of a jar of herbs used. They also ask for step-by-step details about how it's been prepared.

When the couple recently went out for dinner in Seattle, Aaron says, "we got a deer-in-the-headlights look from the waitress. Sometimes a server can get put off, too."

What makes a meal out even more complicated for the pair is that their allergies are not to the same foods. Aaron, 29, was diagnosed with a life-threatening cow's milk allergy when he was 12. Kendra, 31, breaks out in hives and can have swallowing and breathing difficulties if she eats gluten, a protein found in wheat, oat, barley and rye.

For the Johnsons and anyone else with food allergies or some other food limitations, dining out, eating in other people's homes, and munching at office parties and school events can be a minefield. One bite of the wrong cupcake or cookie and a person could face days of illness, lost work or worse — anaphylactic shock.

Experts believe a growing number of Americans have food-related illnesses, says Calman Prussin, an immunologist with the National Institute of Allergy and Infectious Diseases. Though the illnesses appear to be increasing, the trend may partly be the result of increased awareness and testing.

Phadia US, the largest allergy blood test maker in the world, has grown from testing about 10,000 patients in 2002 to about 1 million this year, says physician Robert Reinhardt, senior director of medical, regulatory and quality at Phadia.

Though more allergy-safe edibles can be found on grocery shelves and more restaurants are becoming sensitive to special diet needs, many people with food allergies say staying healthy is not as easy as simply asking for a "wheat-free" or "nut-free" (or whatever your poison is) dish.

Hostesses get hurt feelings, well-meaning friends and relatives make food-preparation mistakes, and waiters and chefs can be surly or misunderstand instructions, the Johnsons say. Other food preparers just don't care or don't have time, they say. For some on restricted diets, sometimes it's just easier to stay home and cook for yourself, says Charlotte Riggs, 23, a lab assistant at the University of California-Berkeley who has peanut allergies.

"Having food allergies can be socially isolating," Prussin says.

David Sarwer, director of the Stunkard Weight Management Program at the University of Pennsylvania, says some people who live with allergies, especially those who have had life-threatening experiences, can harbor food fears that verge on eating-disorder behavior.

"I've had patients who've literally said they'd rather die than use an EpiPen (an injectible emergency treatment that counteracts life-threatening allergic reactions) because it's so embarrassing," Prussin says. "And I wonder: Where did they get that message?"

Coping strategies

Eight types of food account for 90% of all food-allergic reactions in the USA: milk, eggs, peanuts, tree nuts (such as walnuts, almonds, cashews, pecans), wheat, soy, fish and shellfish, according to Centers for Disease Control and Prevention statistics.

Food allergy reactions can happen within seconds to hours after a tainted dish has been tasted and can affect the body numerous ways, says Karl von Tiehl, assistant clinical professor at Cincinnati Children's Medical Center Division of Allergy & Immunology. Reactions include breaking out in hives, eczema, vomiting, diarrhea, bloating and gas.

According to the National Institute of Allergy and Infectious Diseases, food allergies cause 30,000 cases of anaphylaxis, 2,000 hospitalizations and 150 deaths each year. But a more recent 2009 report from the CDC indicates as many as 9,500 children are hospitalized due to food allergies.

One of the greatest hurdles to a person with food issues, especially to common foods, is how to negotiate a normal social life in a food-centric world, says Robert Wood, director of pediatric allergy and immunology at Johns Hopkins Children's Center in Baltimore.

Elisabeth Hasselbeck, co-host of The View, says she has developed coping strategies since her diagnosis of celiac disease 10 years ago. Author of The G-Free Diet, a Gluten-free Survival Guide, Hasselbeck says the day before arriving at a restaurant, she calls to ask about gluten-free options.

"Talk to a manager. Get as high up on the chain as possible, and then ask again when you get to the restaurant. The more emphatic and nice you are, the better. Literally, don't bite the hand that feeds you," Hasselbeck says.

Allergic diners should never get too comfy, though. "Ordering in restaurants is fraught with peril," von Tiehl says. A utensil used in multiple bowls, residue left on pots and cutting boards, even chef's hands can transfer allergens among dishes.

Plan ahead for travel

Even restaurants that claim to be allergy-aware are fallible. "We went out to dinner at a place we'd eaten before and they'd switched the vendor for one food, but I didn't realize it. I got home and had a terrible time breathing and spent two hours on the bathroom floor," Aaron Johnson says.

But when there are no food options — say, friends spontaneously want to go out — sometimes the solution is simply skipping the meal and grabbing a bite later, Kendra Johnson says. "Our friends like this brewery, and Aaron likes beer, and I don't want to deny him that. So sometimes, I just go without and enjoy the social aspect."

Even family members don't always comprehend the seriousness of food-related illnesses.

Marty Guenther, 57, from Rochester, N.Y., who was recently diagnosed with celiac disease, says, "My sister once said to me, 'Why do you want everybody to be miserable like you?' "

Guenther brings her own food to gatherings to avoid long conversations with her hosts about what they're serving. Riggs says her college, Wesleyan, was accommodating after she had a serious reaction in the cafeteria to bread that contained tree nuts. "I arranged some meetings. I interviewed all the dining hall managers at all of the facilities on campus. Within a couple weeks, they had signs on everything that contained peanuts," Riggs says.

Traveling can be hairy as well, but staying in digs with a kitchen where you can make your own meals, mailing your own food ahead to a hotel, and picking vacation locales with Whole Foods, Wegmans and other grocery chains that carry a plethora of allergen-free options smooth the way, say allergy sufferers.

Guenther found a haven at Disney World. "They made Mickey Mouse-shaped waffles on a gluten-free waffle iron. My gosh, that was one of the highlights of my trip," she says. Some baseball teams, like the Washington Nationals, now offer peanut-free sections at some games.

Penn's Sarwer says food allergy patients may gain comfort realizing "they're not alone in the boat." He says, "The reality of eating in America today, because of obesity and diabetes problems, is that we all have to be diligent and thoughtful about what we eat at every single meal."

Prussin says sticking to a restricted diet and carrying an EpiPen if you're anaphylactic are the best peace-of-mind strategies. And though a cure may be a ways off, he says new management options are around the corner. Scientists are developing novel diagnostic and immunotherapeutic approaches and finding successes in test groups, he says.

Meanwhile, the Johnsons are thankful for their understanding friends and family and are determined not to cloister themselves at home out of self-consciousness. And trying not to rock the boat at a social occasion and swallowing an unknown morsel just isn't worth putting your health and life in jeopardy, Kendra says.

Source : http://www.usatoday.com