This article was written by a 14 year old girl who calls herself “12 Paws” dealing with life threatening food allergies.
“Hey Hun,” my Mom tells my Dad, “Let’s stop at the market for groceries, perhaps we can we go to Whole Foods for dinner? We’re getting groceries, so it might be easier to eat there. And, we want to celebrate!” “Great idea!” he says.
“Crap.” I thought to myself.
And why not celebrate? We had just come from my younger brother’s summer concert for his youth symphony orchestra. He is eleven and the first chair in clarinet. We just come from a magical evening of listening to Symphony No 9 in E minor by Dvorak, (known as the New World Symphony), John Williams Harry Potter and the Prisoner of Azkaban among other great performances of great music. My “little” brother, (he is bigger than I am) played magnificently. Music is his great true love.
It is late, nearly 9:00 pm and we had not eaten dinner. We are hungry and want to celebrate. Why not stop off for something to eat? Why not pick up some extra groceries? Why not have a little fun?
Because every time we do this, I enter another war zone.
I have food allergies. When severe life threatening food allergies intersect with “wonderful” places like fancy supermarkets, terror ensues. It always has. I am anaphylactic to all nuts, peanuts, all fish, all shellfish and all flower seeds (i.e. poppy, sesame, sunflower seeds etc.) Those convenient open containers where you can chose which nuts you get cause my throat to itch and swell just walking by. If I walk too close to the open display case of fresh seafood my lips start to tingle. The allergy is airborne, which means that I can react even to the smell.
My parents know this. They knew I was in the car. They take the approach that I still need to live life, that I carry epi-pens with me all the time and that must I learn to stay away from these areas in the markets. I have to function; I get that. But it really is not that simple.
We pull into the Whole Foods parking lot. Food allergies are a constant war. Everywhere you go is a fight, and every particle of food is a land mine. You can’t touch people after they eat something you are allergic to. As a baby, I anaphylacted after my grandmother kissed me. She had eaten a tuna sandwich an hour before. Just last winter, my mom ate almonds. Two hours later she kissed my back as a gesture of affection for helping me with my bathing suit. A large hive immediately emerged at the point of contact of her kiss.
At Whole Foods or any other place, I have to sit and eat plain safe food, (if I am lucky enough to find some) while everyone else shoves sushi, pad Thai, pastries and other food that looks delicious into their mouths. On top of this, I am an athlete. I run middle to long distance and it is a real struggle to get enough to eat. Nearly every single power bar has nuts or seeds or coconut or something that makes it impossible for me to eat. Of the nearly 100 types of nutrition bars beautifully displayed at Whole Foods, none are safe. I can eat chicken or red meat if it is prepared at home, but in a restaurant we cannot be sure it has not been contaminated by inadvertent contact. Besides, red meat and chicken are really not green or sustainable and I have real qualms about the nature of their production and marketing. Last year, my iron levels fell extremely low, exhausting me and causing severe anemia. I felt like a fish out of water, (which I cannot eat either).
I live in a community with a very large pan-Asian population. Most social events revolve around these foods. I try not to be rude but I really cannot touch anything. I rely on special protein drinks, which are bland and taste like someone watered down pseudo- chocolate liquid. This is supplemented with some fruit, vegetables, some meat, beans and rice.
We go inside Whole Foods. There is the hot buffet. It looks great! Then I realize the food theme is Indian. I know the options are going to be slim, but I try to peruse the aisle. Whole Foods has the ingredients listed on a little card in front of each dish. Indian food can be cooked with a variety of oils, but the most common are vegetable, sesame, coconut, and peanut oils.
I see some plain chicken and start to walk toward it, but then I see it’s contaminated. Someone decided to reach over the chicken to the almond couscous and spill the couscous into the chicken. It’s always like this. People are just worrying about themselves, and do not even stop to consider that you be minimizing the already slim options people with food allergies can eat. I wonder if the people who blithely spill food from one food tray into another would park in a disabled parking space so easily, too. Probably not. The parking space would be respected and the fine too high.
Food allergies have always had a serious impact on my life. When I was little, I was forced to eat at a separate table by myself in school. The other moms did not want to be burdened with a ban on peanut butter. The school really did not want to assume the risk. Many schools for young kids are now peanut- free, which is great, but when I was in elementary school peanuts were as “rare” as rocks. Also, many feel these bans in schools create a false sense of security in that signs and symptoms of anaphylaxis would remain unrecognized. Basically, people may believe if there are no peanuts, there will be no problems. Again, peanuts are not the only allergen to which people react and since more kids are becoming allergic to more things, banning peanuts covers only the tip of the iceberg.
Furthermore, people without food allergies do not want to be burdened by those who do. If you are out at a social event, people just roll their eyes when you have to be so careful. They think if you carry an epi-pen you are safe. An epi-pen is the first line of treatment of an anaphylactic event but it does not cure or stop it. Epi-pen buys time, about 10 minutes, until the paramedics arrive. When that happens, you will be placed on an epi-drip along with pressers to keep your heart pumping and brain perfused while doctors wait to see if you respond.
They are not a cure.
Food allergies impact my early social skills. I never really had any friends to talk to during lunch until second grade when the other moms agreed to a peanut ban. Food allergies impact my ability to be affectionate. I am afraid of hugs. Yes, you read that right. Afraid of hugs. People could have eaten something to which I am allergic, and if I hug them, I may react. I am not autistic. I was not born with the inability to get close to people. I was taught it. There was a girl in Canada a few years ago who died after kissing her boyfriend. He had eaten a peanut-butter sandwich an hour before they kissed during a movie. He administered an epi-pen and the girl still died. Killed by a kiss. I have to be on watch every moment of my life.
Food allergies also impact my future. I am fascinated by the U.S. Navy, ever since I was nine. I have this book that describes in detail the inner and outer workings of English Royal Navy vessels. When I was four, I learned that sailors salute with the hand facing back because there might be dirt or grease or rope burns on their palms. Not the typical the way you see in the movies. I toured the United States Naval Academy and fell in love. I always wanted to work with the armed forces, whether it was military intelligence, serving overseas, or anything in between. I have a talent for drawing, I want to design and engineer things for the military. Graduates from the Naval Academy have a STEM degree, which is I need to achieve my goals. I went online and looked at the requirements to apply for the Academy. I was so excited. Then, there it was: the link to the list of medical restrictions for application consideration. I scroll down and see it. Candidates with severe food allergies would likely not be considered. All my dreams went down the drain because of a few simple words. I understand the concerns. Annapolis cannot take people with food allergies. I get it. I understand but I feel defective. I still feel defective.
You might be thinking, ‘Well, at least you don’t have cancer.’ I know that, and I am grateful. But it is still hard. No matter how strong I try to be I have this vulnerability. Everyone needs to eat and yet, this very act can kill me. It is hard to eat and so, not surprisingly, I am thin. I cannot express my exasperation when people approach me with “You are so skinny I wish I had food allergies too!” ‘Are you insane?’ I think. Trust me; you do not want what I’ve got.
Food Allergy and Research Education (FARE) states that currently 1 in 13 kids have food allergies. Everyone wants to know why. One theory I have heard is that clean homes do not expose young kids to allergens so their bodies over react to food antigens. I love my mom, but she is not a great housekeeper; we have always had multiple large dirty dogs and I was in a daycare since the age of 12 weeks so at least for me, the hygiene theory does not apply.
The best theory I have heard came from my Grandmother. She said that when my mom was young, she would buy nuts shelled, spread them out over a page of newspaper, get the nut cracker, and communally the family would eat the nuts right away after shelling. She thinks the pre-shelled nuts in containers at the supermarket exposed to air oxidize with the oils in the foods making them more antigenic. FARE states that in the past decade there has been a 50% increase in the incidence of food allergies. Look at these supermarkets with the multiple open bins of shelled seeds and nuts. People eat these quickly and alone. It is hard not to think she is correct.
My grandmother also said as a young person she would go to the fish seller and he would cut open and fillet the fish just at the time of purchase or more commonly, she would buy the fish whole and fillet it herself at home. Now all the fish is conveniently sliced into fillets ahead of time, all exposed to air and the oils in them are likely acting as adjuvants in the chemical reaction of antigenicity. My grandmother believes convenience is ruining food in general as we see a rise in other food related illness such as obesity, GMOs and food-borne pathogens. I think she is correct but I am more cynical. It is not just convenience. It is greed I think, convenience, marketing and greed.
There is some hope. Our pediatrician spoke to me about new research in England sensitizing patients with food allergies to very tiny amounts of antigen. Their data suggest a person can be exposed to one and a half peanuts without dying. While I applaud Dr. Clark’s work, and am very interested in it, I feel this is only the beginning to making a real impact on my day to day life. I also have heard of a new Biologic medicine approved to treat patients with chronic urticarial (hives) and I cannot help but think the manufacturers of this drug would not also be thinking about applying its use to the food allergy population. Having these indications and approval though will take decades, I worry. In the meantime, the grocery store remains a battlefield.
I believe food allergies are another outcome of a food industry gone awry. I believe we need to stop now and think very hard about how we are going to meet to food needs of this planet in the decades to come. In the end, then, food allergies do not affect only 1 in 13 individuals. I believe they are an outcome of an agricultural, manufacturing and marketing process that affects all of us. So the next time you go to the supermarket, remember this, and perhaps be a little more careful at the buffet.