What does Anaphylaxis feel like?

I’ve had two major anaphylactic reactions in my life (not including close calls)–once, when I was a baby, when we all found out I had a life threatening peanut allergy. The other experience occurred about two years ago. I remember how I felt during this reaction very, very clearly.

 

Parents often ask me, “what does anaphylaxis feel like?” Well, for starters, I can answer, “not good.” My body has an immediate, visceral, negative reaction to all things peanut, starting when I walk by a bowl of peanuts sitting out at a party or if someone starts to eat a peanut butter and jelly sandwich next to me. I immediately sense the allergen and a knowing that this thing is bad for me.

 

I like to travel. I’ve been all over the world and have visited many countries, for the most part unscathed. I’ve been to India many times and have grown up eating and cooking various North Indian dishes. In December of 2005, I attended a family wedding near New Delhi. Indian weddings are great–huge, multi-day family affairs, fancy events, singing, dancing, elephants, horses, and delicious food.

 

Dressed to the nines, my family and I arrived at the main event—a beautiful, outdoor, evening party with waiters carrying around trays of fresh drinks and appetizers—small tented, fire pits scattered throughout the venue, a large, lighted stage set up for the bride and groom. I left my purse in the car—I didn’t want to have to carry it around all night and the driver went ahead and parked it near the other vehicles.

 

The appetizers looked good, and I was hungry. I’d been eating this food my whole life. I was sure it was safe. I picked one from the tray. I asked my sister, “No peanuts, right?” after she ate one. She said, “No, it’s just a pakora.” I said, “cool,” gave it a sniff test and popped it in my mouth. Didn’t taste like anything peanut, just really spicy. At once, I knew that was not the case.

 

My mouth started reacting immediately, as it always does even when a particle of peanut touches it—I started salivating to the point where I needed to spit every couple minutes. My ears starting feeling itchy. Overall, I felt “not good.”

 

I didn’t know how much peanut I had ingested. At that point, I learned that in India, in wedding food, sometimes catering companies will use peanut flour in dishes instead of regular flour because it’s cheaper.

 

In the past, if I had eaten a tiny bit of peanut, like some dust, I was usually okay, albeit a lot of salivation and feeling uncomfortable, sometimes with a stomach ache for a few hours. I tried to ride this one out too. I kept spitting saliva into a glass, dumping it out once it got too full.

 

I kept feeling worse and worse. And, I clearly wasn’t making good decisions for myself. My mother said I should give myself an Epi-pen. Well, I had one Epi-pen with me and it was in the car in my purse. The car was parked in a sea of vehicles that all looked the same. My father and sister set off on finding the driver, car, and Epi-pen. They found it after about 20 minutes. At this point, about 45 minutes had past, since I had eaten the appetizer.

 

We decided to go back to the hotel where we were staying. I had one more Epi-pen there. There was also a hospital across the street from the hotel. As soon as we got into the car, I gave myself the first Epi-pen. In the past, that’s all I needed. We arrived at the hotel in ten minutes and I changed my clothes. I took some Benadryl and some Prednisone we had. [please note: the family members with me are doctors]. About a minute later, my head started to get really, really itchy—my scalp had broken out in huge hives—this had never happened to me before in all the times I had had exposure to peanut.

 

We decided to quickly go to the hospital—thank goodness there was one so close. We arrived to a completely empty emergency room, without a soul in sight. Hardly any lights were on, save a large, bright lit-up sign that said EMERGENCY. A nurse emerged. About 30 seconds later, my entire face swelled up in minutes to a point where I couldn’t see. This was about one hour after initial ingestion, one Epi-pen, and after small dosages of antihistamines and steroids (which likely had not yet been absorbed into my blood stream as I had taken them orally fifteen minutes prior).

 

A couple minutes later, my throat started to feel like it was closing. At that point, I gave myself the second Epi-pen. Then, CHAOS. I couldn’t see– I was in a hospital bed with doctors, nurses, and family responding to my very severe case of anaphylaxis all around– running to get the right drugs, mixing them quickly at the pharmacy because they weren’t directly on hand, quickly finding a vein for an IV. The team had also called an anesthesiologist in case they needed to intubate [put a tube down my throat to help me breathe in case mine swelled up to the point where I couldn’t on my own].

 

I made it through the critical moments. Eventually, they put me on a saline drip via I.V., which makes you have to go to the bathroom. The swelling in my face was starting to subside slightly, and I got a glimpse of myself in the mirror—I looked like a grotesque circus figure–my entire face was distorted and I still had on all of the make-up from the wedding.

 

Some more hours passed. I left the emergency room, with prescriptions for loads of drugs in case of a bi-phasic response—the hospital pharmacy we were at did not have a supply.

 

My family put me to bed as the last of the wedding ceremonies were finishing at our relatives’ house. When I woke up the next morning, I felt incredibly tired. Literally, I felt like I had been hit by a train. My arms were tired, and I wondered why, and then I realized I felt the weight of my bones. I was so weak—the peanuts and all of the drugs had worked my system to an incredible point.

 

It took me 2-3 weeks to recover physically. And after such an intense reaction, I had become MUCH more sensitive to peanuts. I became slightly allergic to a number of other foods as well, which I could eat comfortably before the reaction—avocados, bananas, carrots, and others. Slowly, almost two years later, I’m introducing some of these foods back into my diet.

 

So, that’s what happened to me. I decided to start Allergy Haven after that experience. Thankfully, I survived. I hope my story gives some insight into the anaphylactic experience. If you, your friends, or loved ones live with life-threatening food allergies, I hope this recount remains a second-hand tale.

 

Neelu

Lost in Translation

So I went to the store the other day and decided to buy some Chocolate Mousse Pocky, the Japanese wheat sticks dipped in chocolate. They have this delectable packaging which makes everything look so tasty and inviting. Now of course with my peanut and tree nut allergies, I read the label of almost everything before I buy it.

Here’s what the ingredients list read as:

INGREDIENTS: WHEAT, SUGAR, COCOA, PALM OIL, COCOA BUTTER, SHORTENING, WHOLE MILK POWDER, CREAM POWDER, COCOA POWDER, SWEETENED CONDENSED MILK, LACTOSE, SALT, NONFAT DRY MILK, BUTTER, FRESH CREAM, COFFEE POWDER, CHEESE POWDER, SOYA LECITHIN, ARTIFICIAL FLAVOR, BAKING SODA, TRISODIUM PHOSPHATE

ALLERGY INFORMATION: CONTAINS MILK, WHEAT, SOY BEAN, EGG AND PEANUTS.

Clearly there were no peanuts in the ingredients but the foreign manufacturing company labeled it as such. I bought the Pocky anyway and then spent about an hour debating whether or not I should eat one because I wasn’t sure if the product contained peanuts because of the goofy labeling. Well, in the end I decided to test it out and not too long later there were no more Pocky left.

So, I am very thankful for the 2006 FDA regulation which made disclosure of allergen information mandatory on consumer packaged goods but some things just get lost in translation… — Neelu

Tales of Anaphylaxsis-Part 3

The sniff test:

As I look back into my memory at these peanut episodes, I remember more and more my behavior as a child with this severe allergy. This memory just came back to me. I remember being at sleep-away summer camp, probably around the age of 10 or 11. This was a 4 week program in the San Juan islands off of Seattle. I remember one afternoon where there was an entertainment activity and the counselors passed around freshly baked cookies–peanut butter cookies and no other options. There was nothing marked, no warning–again, this was well over twenty years ago and people were simply a lot less aware. I was also a really shy kid. I wasn’t sure at first, but I innately knew not to trust the food or any adult handing it to me. I remember giving it the sniff test–a practice which has served me well over the years. I put a tiny bit in my mouth but then spit it out immediately because my mouth starting reacting. I rinsed my mouth out with water vigorously and seemed to be okay (at that time, I could touch a peanut butter cookie and even have a little bit touch my tongue and not go into severe reaction). Afterwards, I remember sitting nervously behind all the other girls waiting to see if anything else would happen to me. Thankfully, nothing did and I gradually relaxed.

The sniff test has certainly worked for me since then, but now I do better simply avoiding the food altogether if there is remotely any possibility of peanuts. Even as a little girl I felt I had to take care of myself and expect that no one else was going to look out for me with respect to avoiding peanuts—and this is the same mentality I use today. — Neelu

Tales of Anaphylaxis–Part 2

After that first grade episode, I made it through most of my suburban elementary school, junior high, and high school experience with few memorable incidents. The one episode I did have occured while passing through Bangkok, Thailand about the age of 13. We were there for just a couple of nights and I was determined to not get sick and only eat safe foods, especially because Thai food is notoriously rife with peanuts. We had dinner one night at an upscale hotel restaurant and repeatedly told all staff multiple times, including the chef, to not put peanuts in one dish. Well, peanuts somehow ended up in the dish. An Epi-pen and some throwing up saved the day on this one. What’s the moral to this story? Perhaps, only eat fruit and at McDonald’s while in Thailand with a peanut allergy. Seriously though, it is highly likely that people in other countries (and also in North America) simply may not understand what you’re telling them even if they speak English. — Neelu

Tales of Anaphylaxis — Part 1

So, I’ve had some pretty severe food allergies ever since I was a baby. Peanuts was the big one. When I was about one years old, someone gave me a lick of peanut butter and I ended up at the hospital with an anaphylactic reaction. My mother remembers holding me over the sink with mucus literally dripping out of my face.  We found out I was allergic to all other nuts as well, although not as severe. I also had some other fun allergies which I’ve since grown out of, like egg whites and legumes.

The next reaction I had was when I was about three years old when my family and I were staying at a friend’s home before an overseas flight. This one came when the family friend gave me a Reese’s peanut butter cup. Although we ended up at the hospital that night, we were still able to make the flight the next day.

The third reaction I had was when I was about six years old. This was my first day at a new public school. (Remember, this was well over twenty years ago when schools had much less food allergy awareness and regulation!) My family and I had just moved to a new city about a month into the school year. The moving truck was still unloading boxes and I ended up eating a school lunch at the cafeteria that had a peanut butter cookie in it. Good thing the school nurse knew what to do.

After this series of episodes, I had quite a long break, until my junior year of college, without any serious attacks.  Vigilance and luck prevailed! Stay tuned for more….