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The Allergy Prison

New York Times

June 10, 2001, Sunday

By Susan Dominus

For Carl and Amy Nathan, milk is the enemy. They have felt that way since their son was 2 1/2 years old, when they saw him physically disintegrate in a matter of minutes after someone at a party fed him something that contained yogurt. Carl and Amy already knew Eric was somewhat allergic, because they had previously seen him respond to milk with wheezing and itching. Still, they weren't prepared for this: in the driveway, on the way to the car, he staggered, retching violently, and his face grew swollen. By the time they were in the car and on their way to the emergency room, they could tell from his gasping that his throat was closing up. ''You'd know that sound if you heard it,'' says Carl, a soft-spoken, precise man who then demonstrates: out of his mouth comes a noise like a sob, rasping and strained. Although he is a doctor, a research immunologist, in fact, he says he felt an unprecedented panic as he reached into the glove compartment for the syringe of adrenaline that was there in case of such a reaction. ''There probably isn't a part of the anatomy that I haven't injected a needle into,'' he says. ''But that's very different from being a parent, in the back seat of a car, in the dark, with your son dying in your arms.''

The shot relieved Eric's symptoms, but over the next several months, his parents observed that his sensitivity had grown more severe. Once, after she'd had a sip of milk, his mother kissed him good night and saw a lip-shaped welt rise up on his cheek. ''Merely touching a table surface that had the taint of milk could provoke an itchy rash,'' his father explains. ''His eyes watered and itched if he walked by a pizzeria.'' Over the years, tests revealed a host of other, less severe allergies, to corn, soy, eggs and peanuts.

Amy and Carl began reconfiguring the contours of their lives to protect Eric from those allergens. They kept him away from any public place where milk might be served: cafeterias, restaurants, food festivals, fast-food joints. They stopped buying food with milk in it, even trace elements. Amy made arrangements for him to eat his specially prepared lunches in the school library or the band room, on a different floor from the cafeteria. On the days the cafeteria below his classroom served pizza for lunch, she picked him up and whisked him out of school for that hour, lest any milky particles drift upward through the vents.

As he got older, Eric's younger brother, Noah, who is allergy free, started to complain that he felt deprived of too many foods. To placate him, Carl would occasionally take him to a park where, as if engaging in something deviant, he would give him one small container of cottage cheese and a plastic spoon -- and anxiously watch as his son ate it, reminding him not to spill even a little bit on his clothes or shoes. Then they would both scrub their hands and face and return home, at which point Amy would be waiting, change of clothes in hand, to replace any contaminated item of clothing.

Carl Nathan worries about the isolation that Eric, now 17, suffered as a result of his parents' protective measures. Play dates at friends' homes were rare, because few parents seemed to grasp the severity of the problem. ''Everyone's well-meaning, but the question is, Who can you really trust?'' Carl says. ''And the answer turns out to be no one.''

As extreme as it would once have sounded, the Nathan family's story -- the early scare, followed by the deployment of elaborate defensive systems and obsessive attention to food -- is increasingly familiar to parents with school-age children. With mounting frequency, school-board meetings and class orientations cover the subject of children with hair-trigger allergies: the girl who could go into anaphylactic shock, a multi-organ allergic reaction, if she so much as touches a piece of cheese, or the boy who can't breathe if children around him are eating peanut butter. No one has been tracking the numbers until recently, but school principals, summer-camp owners and most pediatric allergists agree: potentially life-threatening allergies -- most often to peanuts, technically a legume, but also to nuts in general, milk, egg, soy, wheat, corn, fish and shellfish -- are on the rise in this country. It is estimated that 5 to 8 percent of children under 3, and up to 3 percent of school-age children, have true food allergies. Among adults, the number is smaller -- about 2 percent -- in part because many people outgrow their allergies and in part because whatever causes these allergies in the first place is growing steadily more common with each new generation.

The culture of food has shifted in response, in profound ways that might nevertheless go unnoticed by anyone who wasn't looking for them. In recent years, the ingredients lists on packaged foods have grown so meticulous that they can seem more like hazardous-material warnings. At the end of May, responding to Congressional pressure, America's two largest food-industry groups issued voluntary guidelines calling for the additional listing of trace ingredients -- previously lumped under the somewhat dubious term ''natural flavors.'' General Mills has installed doors in all its equipment so that it can more easily be inspected for stray ingredients; in Hershey's plants, some manufacturing lines are reserved for nut products and nut products alone, to avoid cross-contamination of other lines.

''There's been a revolution among major manufacturers in the past five years,'' says Susan Hefle, co-director of the food-allergy research and resource program at the University of Nebraska. ''You see more and more companies blowing the whistles on themselves because they're afraid of making someone sick. You never saw that before.''

But the most visible accommodations have been made where children encounter food -- schools, summer camps, child-care centers. Under the Americans with Disabilities Act, these institutions are required to make adequate provisions for children with allergies, although how they do so is variable. Some camps have banned nuts altogether. Schoolchildren are increasingly accustomed to being segregated by diet -- those who want to eat peanut butter and jelly sit at this table; those who absolutely cannot sit across the room. As a result, certain rituals of childhood that had long been taken for granted, like sandwich swapping at lunch, are now frequently off limits, with staff members enforcing barter bans. Table-wiping procedures are a matter for group committees. And learning about their classmates' food allergies is becoming a topic of general safety for children, along with looking both ways before crossing. As of this August, the Girl Scouts of America will introduce a special merit badge for girls who have learned how to help a food-allergic friend.

Nonetheless it remains, more often than not, the burden of the individual parent to find a solution and then persuade the school of its necessity. When her daughter Jaila was in kindergarten, Cathy DeRienzo found herself heading down to the school as often as once a week, responding to a call from the nurse's office that Jaila, who was allergic to milk and eggs, was ill again. DeRienzo knew what was triggering the hives, what was making her daughter's eyes swell shut: an entire class's worth of midday snacks, the Cheese Doodles with oily residue that ended up on the scissors, the cheese-and-cracker packages that contaminated the hands that played with hers. ''I always wore a beeper, and I never went more than a town or two away from home,'' says DeRienzo, whose daughter kicked and screamed as she was put on the school bus every morning, fearful of the discomfort she would find at the other end. This year, her daughter's school has limited the foods that students are allowed to bring into the classroom. Snacks that are deemed unacceptable are put back in the lunchbox and replaced with a safe snack on hand. As the students enter the room first thing in the morning and again after lunch, all of them clean their hands with Handi-Wipes.

To many parents of nonallergic children, such precautions can seem like ludicrous concessions to a few overprotective, overindulged neurotics. Even sympathetic people might reasonably get fed up when, say, they can't serve their daughter's birthday cake until three different people pore through the ingredients list and debate whether it poses a mortal threat. The incredulity ofthose frustrated parents is not surprising: there is something almost supernatural about the extremity of the phenomenon. ''After my son was rushed to the doctor because he touched an egg noodle -- just touched it -- my friends finally apologized to me for what they'd been saying about me behind my back,'' says Kathy Franklin, a mother in New York City.

Parents of highly allergic children tend to know how annoying they can be and that they can come across as the most overly anxious people ever to hector a school nurse. For the most part, they don't much care. To them, their obsessive precautions are the least they can do. When Amy Nathan goes grocery shopping, she checks every product's lists of ingredients, reading every one of the millimeter-high words no matter how many times she has bought it before. The recipe could change, if only slightly. Then she double-checks that list as she unpacks the groceries, then triple-checks it once again before actually serving the item. She frequently follows up with manufacturers to grill them about their production procedures. (The F.D.A. recently examined 85 independent cookie and ice-cream manufacturers and found nearly one-quarter of their products contained ingredients not listed.) Her routines are part talismanic ritual, part doctor's orders. ''I tell my patients, if people point at you when you walk down the street and say, 'Look at that neurotic parent,''' says Paul Ehrlich, a pediatric immunologist in New York City, ''then and only then are you being careful enough.''

No doubt, some of the rise in allergies can be attributed to greater awareness and the culture's diminishing tolerance for illness in any form. And as with most diseases, with increased awareness comes a degree of hypochondria. These kinds of allergies play upon two of our most persistent preoccupations -- health and food. ''It's always tempting to relate some physical event or symptom back to what you've put in your mouth,'' says Dr. Hugh Sampson, chief of the division of pediatric allergy and immunology at Mount Sinai Medical Center. ''Hypochondria is a big problem in this area.'' He doesn't sound so much frustrated as accepting of the fact that some of the parents or patients who come to see him will want to discuss allergies that do not exist. ''There's definitely a certain personality type,'' he says. ''It's usually the person who comes in and says they're allergic to 30 different things, as opposed to the person who comes in and says she thinks she has an allergy to Brazil nuts.'' Relatively simple blood tests can reveal whether the allergen-specific antibody known as IgE is produced in response to a given food. Nonetheless, Sampson occasionally hears reports of parents who seem so invested in their child's unproven food allergies that the child ends up dangerously malnourished.

But even accounting for food neurotics, Sampson, widely considered the country's foremost expert on pediatric allergies, is convinced that food allergies -- medically proven ones -- are increasingly prevalent. Sampson tested comparable groups of children in the 1980's and in the 1990's and found that the presence of antibodies to peanuts had increased by 55 percent. Actual allergic reactions had increased by 95 percent. ''The study is certainly not conclusive,'' Sampson says, ''but it does suggest that something has changed.'' For all Sampson knows, it's the nut itself; it could also be that children are now introduced to some of these foods at earlier ages, before their immune systems are fully developed. (If a child who is breast-feeding has the right genetic predisposition, he might react to the nuts in his mother's diet, thereby triggering an allergy that could otherwise have remained latent.)

Another theory, however, that is gaining currency among immunologists is that some change in the environment, something added or missing, has disrupted the workings of the immune system. Among the white blood cells that protect the body, there are two kinds of lymphocytes that interact in a kind of subtle feedback mechanism -- the kind that fights intracellular infections (like viruses) and the kind that fights extracellular infections (like parasitic worms) and, erroneously, allergens. In a healthy body, as the production of one kind of cell is triggered, a protein is released that suppresses the production of the other kind. And vice versa -- it is an efficient way of making sure that the body's resources are allocated to the most urgent task. As allergies of every kind have risen in developed nations, immunologists have started to question whether a third kind of lymphocyte, which controls the activities of the other two, has lost its capacity to keep both arms of the defense system in check. This regulatory failure would account for the recent rise in autoimmune diseases like multiple sclerosis, in which the infection-fighting system becomes so overactive that it turns against the body's own cells. When the allergen-fighting system speeds out of control, the result is hay fever / or children who develop life-threatening reactions to peanuts.

Just what environmental change might have tweaked this immunological balance is a subject of heated debate in research journals and at global medical conferences. It could be that children today are exposed to too few of the previously commonplace infections -- like malaria or tuberculosis -- around which our immune systems evolved.

''If some element has always been present in our environment, it must continue to be there if our systems are to be set up properly,'' explains Graham Rook, professor of medical microbiology at the Royal Free and University College Medical School in London. He paraphrases the Nobel Prize-winning biologist Jacob Monod: ''Evolution turns the inevitable into the essential.''

That essential factor missing from our lives could also be something as mundane as dirt. A proponent of the so-called hygiene theory, Rook believes that at an earlier, less sanitary period of human evolution, our immune systems developed in relationship with the microbes in dirt. Rook points to a study conducted in Bristol, England, that surveyed 14,000 children born in 1992. It found that children who washed their hands frequently had a much greater likelihood of developing asthma, a kind of allergic response, than those who washed less frequently. Studies in Germany show that children brought up on farms are less likely to develop allergies, as are those who have dogs. Of course, farm children are also less likely to be exposed to scourges like cockroaches, mold and diesel-heavy pollution, all of which are associated with high asthma rates. But researchers believe those factors trigger the symptoms of asthma rather than cause a predisposition to it.

As the world is increasingly encased in concrete, as antibacterial products proliferate, Rook expects allergies -- to food as well as to pollen -- to continue to rise in prevalence. ''Some people had eczema and asthma-type allergies even when we lived in the mud,'' Rook says. ''But another subset has developed allergies recently, and in fact, no one knows where it will stop. My guess is that the numbers of people afflicted will get a lot worse.''

Anaphylactic shock is itself an evolutionary response run amok, one with some origins in the body's attempt to expel relatively large organisms, like parasites. The bigger the organism, the more violent the body's attempts to expel it. At least that's the way the system is supposed to work. But somehow the response can also be triggered, in people with allergies, by a few stray molecules of an alien protein. And when that happens, histamines and other molecules are released into the bloodstream, rendering ordinarily watertight blood vessels leaky. Tissues throughout the body swell, tightening the airways (and sometimes collapsing the lungs) while dangerously lowering blood pressure. In addition to the symptoms Eric Nathan experienced -- the rashes, the retching, the shortness of breath, the swelling of the tongue and the throat -- he might also have experienced what the literature invariably refers to as a ''sense of impending doom.'' People in early stages of a reaction often feel profoundly that something is very, very wrong, just as they feel the first hints of an itch.

For all we know about nutrition, for all we understand about the immune system, there is still much about food allergies that baffles researchers. Why, for example, would the body develop such an overblown response to something as otherwise harmless as a glass of milk? Why do some foods have the potential to shut organs down, while others, even others with comparable proteins, never do? Why, for that matter, would one person react to eggs, another to shellfish?

The information doctors have is mostly based on statistics rather than on an organic understanding of the chemical processes behind them. We know, for example, that peanuts have proved the most lethal allergen. Sampson estimates that one-fifth of peanut-allergic patients could experience potentially life-threatening reactions. Never particularly reassuring, statistical breakdowns offer especially little comfort to the food-allergic, since it is impossible to pin down what risk group one is in. Someone might notice a faint rash and an itchy mouth the first time she eats a peanut but endure a full-blown anaphylactic reaction the next time she tries it, even in the same amount, even under similar circumstances. Sensitivities as extreme as Eric Nathan's -- for a while he was suffering reactions to food particles in the air -- are very rare but no doubt fuel the anxieties of parents with children who have any food allergy at all. The uncertainty is part of what is psychologically trying about the allergy, what can turn people whose children have exhibited only the mildest of symptoms into full-time watchguards fending off a menacing food.

Ehrlich holds a monthly support group in his office, where a sign emblazoned with bold red letters informs visitors: absolutely no food or drink allowed. The parents come to the office for safety and reassurance; instead, a current of anxiety seems to flow from one parent to the next as the conversation repeatedly circles its way back to worst-case scenarios, stray ingredients and lapses in their own vigilance or that of manufacturers. The circle of 12 people in attendance at one recent meeting listens to Eva Reiss, a schoolteacher from Brooklyn, recall the time she unwittingly fed her 9-year-old daughter, Sarah, a frozen vegetarian burger that had dairy ingredients in it. In addition to being allergic to milk, fish and nuts, Sarah has a history of bad asthma, a more dangerous combination of sensitivities than either represents alone. ''Sarah took a bite, and something went across her face,'' Reiss recalls. ''She got up and walked into the other room. And I realized I hadn't checked.'' A quick scan of the ingredients revealed the trace presence of milk. Sarah said her mouth was itching; she appeared to be hyperventilating, but her mother couldn't tell if Sarah was having trouble breathing or was simply afraid. Sarah wasn't sure either. ''She kept asking me: 'Are you scared? Are you scared?''' Reiss says.

''What did you tell her?'' someone asks.

''I told her, 'Yes, I am scared,''' she answers quietly. Reiss gave her daughter an oral antihistamine, and the symptoms subsided. Nevertheless, Reiss is clearly haunted by the possibility that she might slip up again and with more lasting effects. From the careful, sequential way she tells this story, it is evident that she has told it before, maybe many times, as if trying to retrace her steps and determine what went wrong. Reiss can't exactly explain why her ordinarily careful routine of checking and rechecking fell by the wayside; it's just that routines inevitably do.

The difficulty of travel emerges as a running theme in the group's discussion. Adrienne Menken, a tall woman in sweat pants, describes the profound sense of apprehension that she felt flying with her 6-year-old son, who is allergic to nuts. Shortly before takeoff, she saw that the man behind her was eating a granola bar, which she suspected contained nuts -- I could smell it,'' she says emphatically. She was particularly annoyed because the flight attendant had already generously made the announcement that someone with a severe food allergy to nuts was on board. ''At that point, some guy in the back says, 'I want my peanuts!' and the whole plane cracked up,'' she says. ''I thought I was going to have to physically restrain my husband. He wanted to lunge for the guy.''

Another parent speaks. ''I'm flying to Florida with Jacob,'' says Leslie Zabala, referring to her 3-year-old son. Zabala, a fashion executive, is sleek in black on black, but there are smudges of fatigue below her eyes. At the news that someone else's in-flight snack might pose yet another hidden threat, she looks tense. Was she really supposed to worry about that kind of thing?

''You'll be fine,'' says a parent, ''Just bring Handi-Wipes with you and wipe down his seat carefully before you sit him down.'' Everyone in the room nods. Leslie visibly sags. Handi-Wipes? She is not accustomed to thinking of herself as the kind of person who obsesses about crumbs, who avoids the gaze of fellow passengers as she wields a soggy white cloth. She sounds like she has already doubted her own sanity a few times along the way.

''I don't know why, but for some reason I thought to call Kellogg's the other day to ask about whether there might be soy in their cornflakes,'' she says. ''And they tell me that there's the possibility that the same trucks that carry the corn might also carry soy and that there might therefore be a risk from the cross-contamination. I say to them, 'Come on, what are the odds?'''

Someone across the room asks, ''So, did you give him the cornflakes?''

''You know, I thought, It's probably fine,'' Leslie answers. ''I felt the odds were low. So I gave him one flake.'' Everyone laughs. Leslie looks around, surprised but somehow relieved. She smiles warily. ''Then I stared at him for two hours to make sure he was O.K.''

For these parents, the rustling of plastic packaging is like the faint ringing of an alarm. Their concerns evoke sympathy but also strain credulity. Could even a mother's well-trained olfactory senses detect the nuts in a granola bar a row behind her? As Zabala herself asked, what are the odds that the flakes of cereal in her box picked up lethal amounts of soy during transit? These are people with complex lives -- families, careers, concerns of their own. Yet in this one arena, they seem to have lost the ability to make the kind of offhand risk-benefit analysis that enables each of us to walk out the door every morning. They happily let their children rocket down ski slopes, hurtle themselves at classmates in pursuit of a ball or, most perilously of all, drive a car. They can obviously tolerate risk. Just not when it comes to food.

Given the scale of the response of manufacturers, schools and parents, the number of people who die from a food-related allergy every year is surprisingly low: 150 to 200, according to the Food Allergy and Anaphylaxis Network, a national advocacy group and clearinghouse located in Fairfax, Va. Many more people are at risk, but they watch what they eat, and they carry an Epi-Pen, the preloaded syringe of adrenaline sold for just this purpose. By comparison, around 50 people a year die from allergies to insect stings (a number that has remained constant for years). And yet no one expects public parks to post warnings about bees. It's as if insects fall outside our realm of expertise, our sphere of direct influence; food, on the other hand, is something we're all accustomed to controlling, preparing and managing. It is a familiar locus of obsession. We think we understand it.

It goes without saying that even if death itself is a remote possibility, parents might rightly fear the full gamut of allergic responses. Even mild reactions are terrifying, given the possibility that they might progress, and the symptoms themselves are extremely unpleasant.

And parents have an added incentive to avoid even the slightest possibility of contact with the allergen: the less contact a child has with a given allergen, the more likely it is that the allergy itself will eventually fade away. (One recent study found that 20 percent of the respondents outgrew their peanut allergy; for people with other allergies, the numbers are even higher.) If a 5-year-old kid with a potentially fatal allergy to eggs is kept from ever encountering even trace bits of yolk, say, he might grow into a 17-year-old with a manageable allergy to eggs, and into a 30-year-old who can eat like everybody else.

The difference between a severe food allergy and any other possibly fatal disease is, essentially, one of responsibility. People with a food allergy can't fill a simple prescription or put their faith in a surgeon's hands; the only way they can safeguard themselves is through total avoidance. For parents of children with a food allergy, the responsibility is even greater. It is the kind of pressure that makes it hard for anyone to trust that at a certain point they have done enough. ''Sometimes I'd find myself scrubbing and re-scrubbing a knife that I was worried about for whatever reason,'' says Amy Nathan, Eric's mother. ''And you know, you start to think you're. . . . '' She searches for another word before landing on the unavoidable. ''Nuts.'' She doesn't sound defensive; it's more that she's trying to clarify. ''You never know if you're overreacting or not. But I wouldn't ever want to find out.''

For adults living with a food allergy, there are no cafeteria watchdogs on hand to look out for them. The burden falls heavily on them to construct a world in which they can trust themselves.

Dean Palin, 32, has tried to do just that: Palin owns Rive Gauche, a tasteful neighborhood restaurant in Manhattan that doesn't serve nuts -- not at the bar, not in the pesto, not in the pastries. Six years ago, as he was embarking on his present career, Palin was in Las Vegas. In the lobby of the hotel where he was staying, he ate a peanut-butter cookie he had mistaken for another kind and went into anaphylactic shock. He remembers going back to his room to grab his adrenaline shot; after that, the details blur. But his business partner, who was there at the time, can't forget what he saw: first Palin collapsed, then his lungs collapsed, and soon thereafter, so did the confidence of the doctor on call, who asked what sort of cleric Palin would want to have summoned. ''I try to block the whole thing out,'' says Palin, sitting at his favorite table. Palin is outgoing and cheerful, clearly at home in this space. He high-fives the manager hello, calls himself ''Deano,'' charms his guest. But at the mention of that near-fatal reaction, his knee starts bouncing up and down. Now he'd like another drink and looks around for the waiter. ''I don't like to talk about it,'' he says. ''I don't like to recall.''

Palin has been struggling to move past the reaction since he left Las Vegas. ''I lost 25 pounds right after it happened because I just . . . didn't eat,'' he says. ''I was afraid to eat. I suddenly realized there were nuts everywhere.'' He leans in and lowers his voice for dramatic effect. ''And they were out to get me.'' He winks. He knows how he sounds. He doesn't expect it to make sense.

Palin remembers grappling with a bottle of beer a month or two later, knowing full well it contained no nuts, unable to drink it anyway. ''You get paranoid,'' he says. His diet consisted largely of grilled cheese for months. Often, when he sat down to a meal, he would get anxious heartburn, which inevitably felt like the start of an allergic reaction -- he had difficulty breathing, his chest felt tight -- and sent him into a panic. And so he became a regular at the Lenox Hill emergency room, showing up there in a state of alarm, afraid for his life, as frequently as once a month. This went on for years. It still goes on. ''Sitting in that waiting room, I've watched the last game of the N.B.A. finals, the Oscars and 'The Good, the Bad and the Ugly' on TNT,'' he says. ''They don't make me feel bad about it; they just try to teach me how to differentiate between the two kinds of symptoms.''

Palin never buys baked goods, which might be contaminated with nuts; he almost never eats French fries outside his own venue. (''If you can't show me a can that doesn't say 'peanut oil,' I'm not eating your French fries.'') He never eats on a plane, not one thing, and as he boards he asks the flight attendant to please ''not shove almonds in my face.'' He rarely strays from a handful of packaged goods he knows are safe. Even at his own restaurant, where the kitchen has been nut-free for years, where every member of the wait staff is carefully trained on the subject of food allergies, he tends to order the same dish over and over rather than risk a bout of anxiety. And after he eats, he has been known to interrogate his own chef about the dish's contents, again.

Palin presents his situation with a certain amount of humor and self-mocking bravado, but it's clear that he experiences the anxiety profoundly and on a daily basis. ''I'm still nervous all the time,'' he says. ''I think about it every time I sit down to eat. I feel a lack of confidence. Food is essential to making you feel good. You know, it's a sense that . . . you like yourself when you eat. The things that people reach for to comfort themselves -- I don't have that.'' As a restaurateur, Palin spends his day in the company of chefs, talking about menus, talking about presentation, talking about taste. He surrounds himself with food. He misses it terribly.

People living with food allergies, even severe ones like Palin's, respond to the problem with a predictably wide range of levels of concern, including blithe disregard and adventurous dining.