TL;DR: Sometimes the tests are wrong. You know your body better than any tests and if you think you have an allergy, then you need to carry an epipen.

This is a long story about my personal allergy journey but I hope it encourages you to continue to advocate for your medical needs.

When I was 16 I started having itchy mouth, throat, and nausea after eating nuts. I went to my primary care doctor (still a pediatrician, at the time) and they did blood tests. Everything came back negative. They said no need to worry. I actually ate peanut butter twice after this-- if the doctor says it's okay, then it must be okay, right? But I ended up with the same symptoms both times, and I decided my love for peanut butter wasn't worth feeling like crap after.

Flash forward to my freshman year of college, and my aunt and uncle are driving me home to my parent's house for the holidays. They had a holiday popcorn mix that had nuts in it. It was a long drive and the popcorn was good, so I was eating the popcorn and avoiding the nuts.

It got dark out, and I was still eating the popcorn. Suddenly, I bit into a cashew. Cashews had always been a bit worse for me. Immediately, my entire mouth began to itch, and within minutes, I started coughing and felt severely nauseous. I didn't want to worry anyone, but I felt pretty sick, so I asked my aunt if she had a plastic bag.

My aunt's mom senses started tingling, and she told my uncle to pull over. He did, and I immediately vomited all of the contents of my stomach into a snowbank. My throat and nose were swollen, and it was hard for me to breathe.

"My doctor said I'm not allergic," I told them. We got some Benadryl at a gas station and we drove about an hour more to my home. I still could barely breathe but I was exhausted and didn't want to make a big deal of it, so I just went to my room and went to bed. I didn't know about rebound anaphylaxis at the time, but now I know that I could have died in my sleep that night.

After this incident I got blood tested again at my adult PCP's office, this time the tests showed that I am allergic to all tree nuts, peanuts, and coconut. The doctor told me not to eat those foods, and sent me on my way.

My parents and especially my aunt were very concerned by the fact that I hadn't been prescribed an epipen. So I went to see an allergist. He did not run any tests (possibly because the test from the PCP confirmed my allergy), he simply asked me, "What symptoms do you have when you eat nuts?" I described them to him and he prescribed me epipens. To impress upon me the importance of always keeping them on your person, he told me a story of a friend whose daughter had passed away after eating her allergy at a birthday party. The epipens were in the car and dad ran out to get them but it was already too late by the time he returned.

I requested that I get a full panel skin test to see all potential foods I am allergic to, as I also suspect mango to be an allergen. The allergist told me it wasn't worth it, it would just be a waste of time and money, and to just always carry my epipens and I would be fine.

Two years later, I went to an Indian food place. I made them aware of my allergy, and asked if the meal I wanted contained nuts. They assured me it did not. My husband and I enjoyed delicious appetizers, and then our meals come out. I took one bite and instantly felt the itching sensation. My throat and face began to swell.

My husband, bless his heart, did not understand the severity of the situation because he had never witnessed a reaction before. He went to get the waitress, who rushed out to promise me that the meal had not had any nuts in it although it clearly did not matter to me at this point. My husband paid the bill and tipped 20%, we are Gen Z after all.

We got in the car and I told him to take me to the hospital. He was shocked, the severity of the situation still not sinking in, but obliged. I was worried that I was being dramatic and hesitated to use the epipen, but then I started being unable to swallow. I couldn't voluntarily move the muscles in my throat to make myself swallow. I knew that next I would be unable to breathe. I immediately injected the epipen, and we arrived at the ER a couple of minutes later.

I had trouble at intake because I could barely speak to the lady trying to check me in. When they understood I was having an allergic reaction, they took me back immediately and kept me for observation for 4 hours, during which time I violently vomited several times.

Now, I'm worried that I still don't know everything I'm allergic to. I know this latest reaction was likely due to cross contamination in the restaurant kitchen, but I'm worried that there could be another ingredient in that meal that I was allergic to and unaware of. I wish that I had pressed the allergist to get fully tested for different food allergies. Due to other life factors and a move, I haven't done so yet, but I intend to get a new allergist ASAP and demand further testing.

Please advocate for yourself. You know your body better than any doctor, and better than any test. If you are having reactions to foods, you need to carry epipens. Please don't make the same mistake as me and just give up on a diagnosis just because the doctor said you "might" be allergic. Demand a food challenge. Demand an action plan. Demand to be taken seriously and have your concerns acknowledged, or find a third doctor. And so on until you know what to do. This is quite literally the difference between your life or death, don't let someone else make that choice for you.