My Food Allergy Story

(Originally posted in three installments (1, 2, 3) in October of 2014.)

When I was 11 months old, I had an anaphylactic reaction to egg.

It happened on the day my mother gave me egg for the first time. She fed me part of a scrambled egg, but then noticed that I wasn’t right. I was fussy. I was breaking out in hives. She called my pediatrician, who suggested a bath. She put me in the tub, even got in with me, but I wanted none of it. I was turning redder and screaming now. She called the doctor again, who could hear me in the background, and they suggested we go to the emergency room.

Shortly after my mom started driving, I went limp. My eyes were open, but I was unresponsive. Panicked, she grabbed at my feet, called my name, and tried to get some sort of reaction from me. I remained motionless, collapsed in my car seat in the back seat. My mom desperately tried to wake me up while still driving to the hospital. Through Boston rush hour.

Right before she arrived, I came out of it on my own. I wasn’t screaming anymore and was relatively alert, though still bright red. When she carried me into the emergency room, one of the nurses had the gall to say, “Baby looks okay, Mom looks like she needs a tranquilizer.” They did treat me, at least, with two shots of epinephrine and a prescription for Benadryl (it wasn’t over-the-counter yet.) I didn’t receive any oxygen or steroids. Nobody suggested I get tested for allergies or be seen by an allergist. Nobody prescribed me an Epi Pen or take-home epinephrine of any kind. Nobody even agreed with my mom that the egg was responsible. “It could have been anything she breathed in or ate in the past 24 hours.” Nevermind that it was the only new food I’d eaten in a week. Or that the reaction started right after my eating an egg. (My mom used to be a medical technologist, and worried that two parents with environmental allergies could produce a child with more severe allergies.) But no, it could have been anything.

I’d been walking for a few months and was steady on my feet, but the epinephrine made me wobble like a drunk while at the same time bouncing off the walls. At the drug store on the way home, when my mom stopped to get the Benadryl, another woman looked at my beet-red skin and advised, “Oh honey, you shouldn’t leave your baby out in the sun.” The perfect thing to tell a woman after a day of fearing she would lose her only child followed by not being taken seriously by emergency personnel.

This was 1982, and food allergies were not common, widely known, or widely understood.

Doubt lingered in my mom’s mind because of what the ER doctors had said, but she was still pretty certain the egg had caused the reaction and kept me away from it for the next few years.

My health complications didn’t stop there. Before I turned 2, I’d been diagnosed with asthma. (My dad has asthma too, as did his mother. And both of my sons.) I had issues with coughing, wheezing, and difficulty breathing, particularly when I was sick–which sometimes seemed to be all the time. There were no nebulizers back then–at least, none prescribed for at-home use. My medications were oral liquids, which tasted uniformly horrible. Treating my asthma became fraught with stress for everyone. I didn’t want to take the medicine, and sometimes I would throw up after taking it. My parents were worried that their child couldn’t breathe, and even more worried that they couldn’t effectively treat me. How much had I thrown up? Could they give me more, or would I overdose?

The sprinkles weren’t any better. They would mix the medicine into another food, but the only difference was that I would soon refuse to eat the food. “Applesauce medicine” is what we used to call one of my asthma medications, and taking it was just as challenging as the liquids. In fact, the medicine permanently ruined applesauce for me. Decades later, I will occasionally eat it, but it’s still not a food I will seek out on its own.

Around the time I was 3, my mom realized that I had been eating baked goods with no adverse reactions. She began to think that I’d outgrown the egg allergy, although I still never ate eggs on their own. Her relief at the disappearance of that allergy was short-lived, however, as she had new things to worry about. I’d started to show troubling symptoms every time I came into contact with nuts. I broke out in hives after helping chop pecans for zucchini bread. I didn’t “like” the “seeds,” as I called them, and after eating some cookies my grandparents had sent, I said that my tongue itched. Everything came to a head at a group playdate in May of 1985. The moms brought food, including walnut muffins. My mom was wary, but let me have one.

I started screaming. My mom was scared, and also disappointed at this seeming confirmation of her suspicions and fears. She packed me up to leave the playdate, but not before noticing the judgmental look on the face of one of the other moms. “Just tell her she doesn’t have to eat it if she doesn’t like it,” the look seemed to say. None of them had any experience with food allergy, and so nobody recognized it.

My mom bought me a popsicle to try to reduce the swelling, but otherwise didn’t know what to do. We didn’t have any Benadryl. It became over-the-counter sometime that year, but I don’t know if it was available at the time of this incident.

My four-year well child visit was soon after, and my mom mentioned the incident to my pediatrician. His jaw dropped, and so did my mom’s stomach. “That’s anaphylaxis,” he told her. “She could have died.” “Shit,” my mom thought. And finally, somebody prescribed me epinephrine.

EpiPens weren’t widely available yet, so what I first received was an AnaKit. It was a traditional syringe, preloaded with two doses of epinephrine. You’d push the plunger until it stopped for the first dose, then rotate it, and then you could administer the second dose.

The next few years of my life were a whirlwind learning adventure for my family. They trained me to ask whether food had nuts in it, and I notoriously even asked that question once when someone offered me a popsicle. But despite our care, I sometimes still had accidental reactions, and my parents still ran into trouble with doctors not believing them.

“Her throat does look a little raw,” an ER doctor once told them. “Maybe she has strep.”

“It’s not strep, she ate nuts at the church potluck and says her throat itches.”

“Well, let’s do a strep test anyway.”

Lo and behold, the strep test was negative. And why should we pay for a strep test when we’re in the emergency room for a very specific, known cause? ER doctors do have to be detectives, of course, because people don’t always tell the truth about what brings them in (when the reasons are illegal, irresponsible, or embarrassing, for example.) And I wasn’t visibly swelling up or losing consciousness. But by today’s standards, I should have been (and probably would have been) treated for anaphylaxis immediately.

Sending me out into the world was difficult, too. My mom did manage to get my epinephrine into the school nurse’s office, although there was no Food Allergy Action Plan to go with it, and who knew how many people would recognize the signs that it was time to use it? As frightening as it was for my mom to send me off, I scared my teachers as well. How were they supposed to deal with this child with a medical condition they’d never encountered before?

I left behind a few traumatized teachers, whenever something happened in class. My first grade teacher obviously thought she was being accommodating when she broke the class into two groups to make cranberry nut bread for Thanksgiving. One group would follow the recipe in its entirety, including nuts. The other group would leave the nuts out. My mom was against this accommodation, arguing that I needed to learn that I couldn’t always eat what everybody else ate, but the teacher and parent helpers said it was fine, they didn’t want to leave someone out.

The baking of the breads went according to plan, but then the teacher sliced up the nut bread to hand out to everyone else before she sliced my nut-free bread. Using the same knife and cutting surface. Cue the alarm bells. Cue also the teacher who got a crash course in food residue and contamination. (For decades, my mom would report running into this teacher in the grocery store, and the woman always recognized my mom. Some experiences burn faces into your memory for good.)

To be honest, I’m not sure we even understood the concept of allergen contamination before that. My parents might have known about it, but this is a milestone in my memory, when I realized that my food touching someone else’s food could cause a problem. The world didn’t respect the problem at the time, either. Certainly, packaged foods seldom bore “may contain” warnings when I was young. I’m not entirely sure when the transition occurred, because I wasn’t consistently reading the labels until my teen years, but I do remember being surprised at the new warnings that appeared on foods. Some of them declared that foods I’d been eating for years were dangerous to me, which caused no end of confusion.

Around the time of the first-grade incident, when I was 6 years old, I got a new pediatrician who also specialized in allergy. That meant I finally got skin testing for my allergies. They tested for a huge number of items, both food and environmental. In fact, there were so many items that they had to split the test into two days because my six-year-old back wasn’t big enough.

I hated the tests. I had to lay on my stomach for what seemed like eternity while my back itched like mad. My mom encouraged me to scratch my stuffed stegosaurus’s back where I itched. I was worried about what they would find, and especially worried that they would tell me I was allergic to chocolate.

My test results were surprising, and revealing of how many false positives skin testing can yield. I had positive results, 4s, in fact, (scale of 0 to 4 that is still used today) to all of the tree nuts, which was entirely expected. I also had a 4 for peanuts, which I had been happily–and safely–eating since the age of 2. And I had a bunch of 2s and 3s to all sorts of random foods including peas and beef, all of which I had been safely eating. I had no reaction to egg by that time. Or, to my relief, to chocolate.

I’m grateful to my parents for their level-headedness after those tests. Some parents might have cut all of those foods out of my diet, but mine didn’t. Why cut out a food I was having no reaction to? The doctor wanted to perform food challenges on all the foods I had positive results for (other than the nuts) to see if we could provoke a reaction at high doses. My parents declined those challenges. If I wasn’t reacting to the normal-sized portions I was getting at home, then what was there to worry about? The allergist asked, “What if she’s eating at someone else’s house, and they give her a huge portion and make her finish her peas? Don’t you want to know if there’s a threshold?” My mom said, “Who does that?”

This doctor also prescribed me with inhalers for my asthma, which made treatment sooo much easier. He also convinced my mom to start treating my asthma at the start of a cold, rather than waiting for asthma symptoms to occur. “By the time she starts coughing,” he said, “she’s down to 50% lung capacity.” And he gave me a daily inhaler, to keep my lungs more stable even when I wasn’t sick.

Time went on, and we muddled through. At some point, the responsibility of carrying of my inhaler and EpiPen (which I now had) was passed on to me. I remember wearing a fanny pack daily in 5th grade, so that might have been when we transitioned. I definitely remember keeping the EpiPen in my backpack by high school, and I particularly remember the flimsy plastic case it used to come in being crushed by the weight of all my books. I wondered whether it was sterile enough for use if it was unprotected in my bag, picking up all the lint and grit that backpacks gather.

The use of my daily asthma meds was relegated to me as well. I was diligent, until sometime during my teens, when my mother asked if I was still using my inhalers. “Sometimes” was my answer. She rebuked me for that, telling me that they have a cumulative effect and using them once in a while wouldn’t do me any good. If I wasn’t having problems despite not using the medications properly, then maybe we ought to stop using them altogether. My asthma did seem to have entered a “honeymoon period,” and so we stopped the daily medication.

In fact, I stopped seeing an allergist altogether for a while (and I’d never been tested yearly like my kids are.) I continued to get EpiPen, albuterol, and daily antihistamine prescriptions from my primary doctor, but I had food avoidance routines down by that point, my asthma only bothered me when I was sick or sometimes exercising, and I never had any questions. I saw no need for a specialist.

I continued to have the occasional slip-up in the food allergy department into adulthood. It took a couple emergency trips to the drug store to buy Benadryl before I finally remembered to always keep some with me. But still, by the time I was on my own I felt confident in my ability to navigate the grocery store, restaurants, parties, and life in general.

One thing I figured out, probably in my teen years (and something that will certainly make some people shudder), was that I could do a “taste test” for foods I was uncertain of. If there was a food I wanted to eat, but I couldn’t find a label or the person who made it, I would break off the tiniest crumb of the food and place it on the tip of my tongue. Then I would wait. If I felt nothing, I would repeat the process with a slightly larger crumb, and again a few times until I’d eaten a whole bite safely. If I made it that far, I would eat the food, confident that it did not contain any nuts. No foods that passed this taste test ever gave me trouble in larger doses.

If, on the other hand, I started to feel the telltale tingly itch of an allergic reaction, I would spit out the crumb, rinse out my mouth, wash my hands, and move on. Generally if this happened, it happened on the first crumb. And generally, that was as far as it would go. Although there was once, while I was babysitting, no less, that a taste-test reaction got a little more severe. The cookie probably had walnuts in it, which has always been my worst nemesis. But was that enough to stop a teenager from repeating the process? Of course not. (Warning to parents:  Allergic teenagers are scary. The time between taking responsibility for their own care and full maturity can be fraught with bad decisions. I’d never thought of it that way until recently, but when analyzing my own behavior, I had to admit that some of it was reckless. In fact, I’d forgotten about the babysitting incident until I sat down to write this post.)

As I did become an adult, there wasn’t much to report. Every now and then something would slip under my radar, but the incidents were few and far between. I took charge of buying my own food, but knew how to read labels and fortunately, tree nuts aren’t as common as some other allergens. In 2002 I introduced a new family to the complexities of food allergies when I met my husband. As we got engaged and then married, he and his family got to learn more and more about my corner of the world.

I’ve never asked my husband to completely remove nuts from his diet or our house. What I do expect is that he thoroughly clean up after himself. And to know when he can and can’t kiss me. I had to educate him on what all that meant at the beginning, and I give the occasional reminder even now. Even though he knows what I’m reminding him of, he manages not to sound impatient when he responds to my reminders. Most of the time. He knows that this makes me nervous.

Having children was an adventure, as it is for everyone, but especially in the food allergy department. I’ll give my children their own introductions, but I will say that having kids made me reevaluate how I handle my own allergies. I’d become lax in some areas, but I can’t teach my kids proper safety if I don’t model responsible behavior. I can’t check their restaurant choices for allergens while assuming a food is free of mine, even when it has been in the past. After all, you never know when someone is going to do something wacky, like put walnuts in an egg roll. And I have a responsibility to be there for my kids.

I started seeing an allergist again myself. I had new questions I’d never before considered, like whether it’s safe to breastfeed after an allergic reaction. I wasn’t wondering about the drugs so much as whether I might pass anti-walnut antibodies on to my children, thereby giving them my same allergies. It was a whole new world–a time that causes many people to reevaluate their priorities–and it galvanized me to be safer and to help make the world safer for my children.