or 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 aftersomeone at a party fed him
something that contained yogurt. Carl and Amy already knewEric 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 emer-gency room, they could tell from
his gaspingthat 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 comesa 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.
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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."
s
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.
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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."
o 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.)
Top
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?
Top
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.
hrlich
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.
iven 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.
Top
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."
or 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.
eople
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. Most people with
food allergies understand, and have managed to internalize, the
reassuring truth that if they're carrying an adrenaline shot on
their person, they should come to no lasting harm. They inform the
waiters that they could die on the spot and bravely take their
chances from there.
Top
But for some, the line between
anxiety and allergy blurs altogether. It is not uncommon, allergists
say, for children and adults who have already lived through
anaphylactic shock (around 30,000 people a year, hospitals estimate)
to experience severe anxiety or a flat-out panic disorder for months
or years following the incident. So many of the children whom
Sampson treated were experiencing anxiety and eating disorders after
undergoing a severe reaction that he recently initiated a study of
post-traumatic stress among them.
That mysteriously grim symptom of
anaphylactic shock -- the sense of impending doom -- suggests that
Palin's anxieties about food may not be exclusively emotional, but
physiological or neurochemical as well. In one Pavlovian study
Sampson described to me, two rats were repeatedly fed food that
triggered an anaphylactic shock reaction while lights flashed and a
loud noise went off simultaneously. Eventually, rats exposed to the
lights and noise would respond with symptoms of an allergic attack
even without ingesting the allergen. For someone who has experienced
anaphylaxis, a restaurant setting might be, in some less dramatic
way, the equivalent of those flashing lights and loud noise -- it's
as if the body has learned in certain contexts to generate
spontaneously the neurological component of the allergic reaction.
"With this kind of thing, you're
wasting your time with psychoanalysis," says Dr. Frederick Wamboldt,
head of the department of psychosocial medicine at National Jewish
Medical and Research Center in Denver. Panic, he explains, is not
misplaced or exaggerated fear; it is something qualitatively
different, distinguished by a shortness of breath. Psychiatrists
believe increasingly that panic is the result of a misfiring in a
suffocation alarm system at the base of the brain. In some cases,
people are born with an oversensitivity to carbon dioxide that
renders that alarm system hair-trigger sensitive, leading to
spontaneous panic; in others, once that system has experienced a
serious threat, it subsequently becomes hyperaware, with the same
results. In people with food allergies, of course, the panic mimics
the symptoms of the allergic reaction they fear -- shortness of
breath, pounding heart -- so that the panic feeds on itself
insidiously. "These anxieties aren't all in people's minds,"
Wamboldt says. "They're in their brains."
None of this, of course, would
appear to explain the elevated levels of anxiety of so many of the
parents. But if their children are experiencing post-traumatic
stress disorder, then perhaps some of their parents are experiencing
secondary traumatic stress disorder, a phenomenon found in the
family members of people who have suffered some life-threatening
blow. The term is sometimes associated with the children of Vietnam
veterans, some of whom mysteriously endure the same kinds of night
terrors and flashbacks as the parent who returned from the war, even
if that parent rarely discusses those dreams or has never
acknowledged having them. It is the result of a kind of psychiatric
contagion, with empathy serving as the vector for the disorder.
In the months after she
experienced the early stages of anaphylactic shock, Maia Pillot,
then 7, developed all the classic symptoms of post-traumatic stress.
She was terrified to eat, but she also became claustrophobic; her
parents spent hours trying to coax her into cars or elevators. Her
mother, Shawne Cooper, has no allergies herself; nonetheless, one
afternoon at the peak of Maia's anxiety, Cooper suddenly felt itchy
as she talked to a friend on the phone. She lifted her shirt and saw
that red welts had broken out across her abdomen. Instants later,
the hives were spreading all over her body and she was having
trouble breathing. "I thought, This is where she gets the allergy,"
says Cooper. "She must have inherited it from me." Panicked, she
called her doctor. He told her to take some Benadryl, but that her
symptoms were most definitely psychosomatic. "I swear," Cooper tells
me, "I used to be a laid-back mother."
n my way
to Dean Palin's home one early evening, I stopped in my tracks. A
few hours earlier, I remembered at that moment, I had eaten peanut
butter on toast. I hadn't even paused to consider whether that might
be a bad idea, but then, I'm not accustomed to questioning food --
I'm someone who eats steadily, unthinkingly, all day long, eating to
calm myself, eating to focus, eating to be social. Now I felt
alarmed by my carelessness. What if I were to play with Palin's
2-year-old daughter, Amanda, who shares his allergy? Could the
tiniest trace of nut protein pass from me to her and endanger her
health? I thought of the 2-year-old girl cited in one of Sampson's
studies. She had eaten a sandwich made with a wiped knife that still
had mere milligrams of peanut butter clinging to its blade. She went
into shock, and she died.
Like the parents I had been
interviewing, I suddenly wanted desperately to err on the safe side,
and I, at that moment, was not on it. I ducked into a nearby
restaurant's bathroom and washed my hands, rubbing suds into the
crevices around my nails, checking to see if I had any traces on my
sleeves. I decided ultimately to go ahead with the interview. When I
arrived, Amanda was wearing a white T-shirt with the words "Sweetie
Pie" on it in pink, swooping curlicues. "I don't like her," she
proclaimed, pointing at me as her mother introduced us. During the
45 minutes I was there, I felt like an infiltrator. I was relieved
when I left, as I suspect they would have been had they known.
uch of
the policy driven by food allergies -- the precautions that schools
are required to take, the scrutiny to which manufacturers are now
subjecting themselves -- has been based on the somewhat quixotic
goal of exerting total control over a given environment. The
objective is to break down the components found in a shipment of
grain or on a cafeteria tray and whisk away into the ether the stray
crumbs, or even the imperceptible molecules, of a food found where
they're not expected. A consortium of nine state attorneys general
has petitioned the F.D.A. to issue new regulations that would
require more precautions from manufacturers to prevent
cross-contamination; despite the industry's voluntary
accommodations, Congresswoman Nita Lowey intends to move forward
with legislation that would require specific listing of "natural
flavors" on packaging.
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There is no record of anyone ever
dying of a food allergy linked to "natural flavors," but more
specific labeling certainly would be a safe and inexpensive
precaution. Preventing with total certainty the possibility of
cross-contamination would be a trickier proposition. If every
manufacturer listed every ingredient that might ever have brushed
across a production line, ingredients lists would no longer serve as
a useful filter. Everything would be off limits. But pure solutions,
like constructing separate production facilities for products that
contain allergens, would break the bank for most manufacturers.
"There's no one way to legislate this or enforce it," says Susan
Hefle, the University of Nebraska researcher. "Every manufacturing
plant's concerns are different. And you can never guarantee
absolutely certainty. How do you account for human error?" If plants
devote massive resources to preventing the highly unusual prospect
of a cross-contamination fatality, might other food-safety concerns
fall by the wayside?
The effort to scour and scrub any
contaminants in the environment is particularly incongruous, given
that hypercleanliness may have caused the spike in allergies in the
first place. Human biology, it seems clear, will forever unleash
unforeseeable responses to whatever controls we try to exert. The
systems are too complex to imagine their innumerable pathways, the
intracellular conversations too subtle to overhear in their
entirety. Rook, the proponent of the hygiene theory, is nonetheless
confident of a remedy. "If we want to put these microbes back into
the environment, we can do it via oral vaccine," he says. In other
words, reintroduce the uncontrollable, the dirt, the bacteria we
exert so much energy expunging -- only do so in a highly controlled
fashion. Clinical trials for just such a vaccine are already
underway in England.
But Sampson is more interested in
cutting the allergic reaction off than in figuring out why it is
occurring in the first place, and he is close to succeeding. He is
currently in Phase 2 clinical trials for a drug called anti-IgE,
which essentially blocks the allergy-triggering molecules from
binding with the appropriate receptor. As for the various theories
about why allergies have increased, Sampson is familiar with them
all, but he doesn't subscribe to any one in particular. If he
doesn't embrace the chaos, he accepts it. "People jump on theories
left and right," he says, "but it's unlikely that the cause for a
systemic change like this will turn out to be only one thing. It's
got to be a variety of factors." He shrugs and throw his hands up,
as if reaching for an answer among the invisible, spinning particles
of space. "It's all up in the air."
t is
hard to imagine how children who grow up burdened by the constant
fear of poison -- fear that may only be compounded by their parents'
concern -- ever make their way in the world. Would Dean Palin's
daughter, Amanda, inherit her father's anxieties along with his
malady? Would Maia Pillot ever eat calmly, having thoroughly
outgrown her terror the way some kids do their allergies, as if by
magic? I get one answer when I finally meet Eric Nathan, now 17 and
an accomplished young musician, in the cafeteria of Juilliard School
in New York. Eric is tall, like his father, Carl, but looser-limbed,
more placid, with the slightly spacy look of a kid who is somewhere
else, in a book or a sonata. It's as if his parents have done enough
worrying for him over the years to free him up for other concerns.
Eric's allergies are now less
severe than they once were, allowing him to expand the boundaries of
his life, if only slightly. He can join his friends at dinner at a
restaurant or sit with them in a cafeteria like Juilliard's,
although he still can't eat there. Having lost his allergy to corn
(and therefore corn syrup), he can finally indulge in some kinds of
candy but never chocolate, which usually contains milk. He hasn't
forgotten about his allergies -- thinking about avoiding certain
foods "is like breathing," he says. But he doesn't seem anxious, and
he doesn't seem to consider himself particularly deprived. If
anything, an obsession with food safety has relieved him of a much
more common preoccupation: an obsession with food itself, its
reassurances, its reward. "I need food to get energy, so I eat it,"
he says. "I don't really care about food. If I can't eat a bag of
potato chips, I'm not going to lose sleep over it."
At this point in his life Eric
seems faintly bored by the subject of his allergies; he's much more
interested in talking about an upcoming all-state competition and
his favorite instrument, the trumpet. As he describes playing it, he
could as easily be mistaken for someone talking about eating a
craved food. "The way it feels on your lips, on your tongue -- it's
an emotion," he says. "Your whole body is involved. It feels happy.
It feels exhilarating." The key difference, of course, is that when
Eric is playing the trumpet, he's in control. When his lips are
buzzing the right way and his tongue is separating out the correct
notes, it's a thrill, he tells me, the resulting pure, clear tone
one of life's few sure things. That's what he loves about music: the
delivery it makes on a promise. Eric has internalized his parents'
desire for fail-safe certainty. Fortunately for him, where he looks
for certainty, he might actually find it.
Susan Dominus is the
editor of Nerve,
a magazine about sex and culture.
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