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Is This My Last Supper?

That's a worry with anaphylactic allergies. For me, even a kiss can be dangerous.

Janet French 15 May 2004TheTyee.ca
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The tiniest fraction of a brazil nut will swell my throat closed in minutes and transform my smooth skin into a topographical mess of hives. I carry antihistamines and an adrenalin-filled needle, the Epipen, with me everywhere.

At a young age, I was diagnosed with an anaphylactic allergy to nuts. Anaphylatctic, as in life-threatening,

Which means that at restaurants I unleash the Spanish Inquisition onto the wait staff. Traveling is a nightmare and the grocery store is a minefield of dubiously pre-prepared foods. Guys eating granola bars best stay far away from me. There's no way I'm kissing someone who's eaten a nut, no matter how cute he is.

Restaurant dread

Truth be told, I haven't eaten in a restaurant in four years because I can't be sure their kitchens are nut-kosher. And one too many servers have greeted my inquiries about potentially deadly dishes with a vacant stare of indifference.

Canadians are still waking up to the needs of the exponential number of people affected with food allergies. "People who haven't seen these kinds of reactions before often write them off," says Dr. Robert Schellenberg, head of the division of allergy and clinical immunology at the University of British Columbia.

The most compelling tactic Schellenberg has seen is a business card his patient presented at restaurants to stun the kitchen staff into compliance. The cards read "DEATH" in bold print at the top, with a list of allergenic foods underneath. But Schellenberg says problems especially arise when larger groups go out for lunches. "In a social situations, you don't really want to really bring [allergies] tremendously to the attention of everybody, they have to try to do it discreetly."

For Virginia Roberts, a biotech worker in Boston, eating in a restaurant is like "sitting on a chair that's known to have tacks on it." Roberts has anaphylactic allergies to peanuts and tree nuts, and trusts few people well enough to eat at their houses. She scrutinizes her hosts' abode for signs of "contamination" like peanut butter cookies or Reese's Pieces wrappers. Once there's been a "good conversation" about what could happen to her if she has a reaction, she says both parties feel more comfortable about sharing a meal.

Roberts' self-preservation has put her in awkward social straits. A co-worker who brought baked goods into work could not understand why she would never eat her treats. Baking "was her way of sharing herself with everyone else ...she felt rejected," says Roberts. She took a cookie home to smooth things over, but didn't eat it.

Appeasing someone who wants you to sample her food is trying. "I've found that if you approach people calmly and say "this is specifically what I need to know," they react with more understanding," says Roberts.

Lonely planet: traveling with allergies

The least desirable place to go into anaphylactic shock is 39, 000 feet in the air on a 747. Penny-pinching airlines have neglected those with food allergies by scrapping specially ordered meals prepared for anaphylactics. I steer clear of the plastic compartmentalized airplane provisions, and bring a sandwich instead. I have lugged several days worth of homemade pre-prepared meals with me, which takes up more room in my baggage than my clothes. A trip to Asia or India is near impossible, where the majority of food contains nuts or sesame oil.

Meredith Kierstead makes a mental note of the closest hospital everywhere she travels. The 26-year-old lab technician at the University of Toronto has life-threatening allergies to nuts, peanuts, mint, citrus fruits and sunflower seeds. Her allergies became increasingly problematic when she spent a year in Brazil, knowing little Portugese when she first arrived.

In a foreign country, communication skills can mean the difference between life and death. One of Kierstead's hosts wanted her to try some cashew juice, but Meredith refused, not knowing how to explain it might kill her. "You feel disrespectful at the time," she says, "because you can't get across in the language that you're not being discourteous, you just really can't try it for safety reasons."

Kierstead says she is terrified of having an allergic reaction in a foreign country and not being understood in time to save her with medical care.

Surviving the supermarket

I once had a panic attack in a grocery store. Those tall shelves bore down on me. Harsh fluorescent lights illuminated my weakness. Food was out to get me.

Shopping is an acid trip thanks to all the pre-prepared foods available in the supermarkets.  In 1998, the Canadian Food Inspection Agency (CFIA) sent a letter to all Canadian food manufacturers, importers, distributors and their associates. The CFIA admonished them to ensure allergenic foods such as soy, milk, wheat, tree nuts, peanuts, fish, or eggs are included on ingredients lists, even if they are only present in trace amounts. So now fears of lawsuits have prompted a novel phenomenon- the "may contain traces of..." warning.

Result: I can't eat most microwave dinners, cereals, ice cream, chocolate bars, crackers, cookies, potato chips, fried foods, bread or baked goods.

Registered dietician and nutritionist Susan Firus, who works at the BC "dial-a-dietician" call centre, warns about discrepancies in Canadian ingredient labeling. She says some components like mandelona, nu-nuts and goober peas actually contain peanut protein, but are not labeled as such. Imported food is infinitely perilous since labeling rules abroad are different. Furtive peanut oil can also pop up in unexpected places, like egg rolls, bird feed and animal chow.

Dr. Schellenberg says he thinks Canadian ingredient labels are trustworthy for the most part, based on feedback from his patients. Yet, some people with food allergies don't share that faith. "One time I found on a jar of jam it said 'fruit pectin' in English and 'apple pectin' in the French section," says environmental engineer Christine Woodhouse, who scrutinizes ingredients devoutly. On hash browns, she found one additional oil listed on the French side that wasn't listed on the English side. "Since I've seen that kind of thing, I'm not as confident," says Woodhouse.

Thank goodness the CFIA and the Food Allergy and Anaphylaxis Network in the United States send out email warnings as soon as an ingredient blunder has been found.

I have politely asked Dempster's to label the menacing chunks of sesame seeds that lie hidden between their bagels. I've begged Post Cereals to banish corn syrup from Shreddies, and I've demanded of Yoplait "what are 'natural flavours' anyway?" Their generic responses reek of feigned sympathy. "Dear, Ms. French, we realize food allergies are a common problem, but changing packaging/ingredients/recipes is expensive." Strangely, these same impoverished corporations change packaging at the drop of a hat to add a promotion.

Dangerous liaisons

Until Canada awakens to the needs of 600, 000 anaphylactic food allergy sufferers, I'll be in my kitchen baking bread and muffins from scratch. Rather than entrusting my life with strangers in restaurants, friends come to my house for stir-fry, or we picnic under rustling trees on soft green grass. I long for the day when I can explain my allergies to a new friend and not be patronized with "I feel so sorry for you" or "I would just die if I had as many allergies as you." Comments like these just fuel feelings of social isolation.

As Virginia Roberts and Meredith Kierstead also say, having anaphylactic allergies is part of my identity.

And part of my boyfriend's life now, too. James runs into our house towards me, and suddenly stops dead, his face inches from mine. After a pause, he says: "Orange juice, Shreddies. French fries, coke, and a hamburger on a sesame seed bun. Damn!" He cannot kiss me.

In June 2002, the New England Journal of Medicine reported 5.3 per cent of anaphylactic food allergy sufferers surveyed experienced notable reactions after kissing someone who had eaten an offending food. In some cases, hours had passed between eating and kissing, and teeth brushing in between didn't always stop a reaction from occurring.

Like all my boyfriends before him, James has undergone rigorous training. First, the inventory drills: identifying which dishes, pots and cutlery are mine. These cannot be touched by anything potentially nut-ish. The designated dish-scrubber and dish-drying towel are presented, and are to be used on my dishes only. No knives that have gone into the peanut butter must ever go into the jam, on pain of death, literally. Ingredient lists must be read- not just on food, but shampoo and cosmetics- they are an allergic person's mantra.

Tonight though, even if James clears all these hurdles, his rewards will be limited. Like I say, there's no way I'm kissing someone who's eaten a nut, no matter how cute he is.

Janet French has written for The Nelson Daily News, Books in Canada and Arts Atlantic Magazine. This summer she is an intern at The Edmonton Journal.  [Tyee]

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