05/23/2013

Capture peanut allergy

This will likely be the most difficult post to read, as well personally most difficult post for me to write– the story of the first and only time I went into anaphylactic shock. I hope this story can help others stay strong when speaking up for themselves, and also help spread the word about false-negatives in allergy prick tests.

05/23/2013

I had contacted an allergist to see if I could be a candidate for allergy shots, to lower my overall histamine levels, so that when I had a reaction to peanuts, it may lessen my response. They let me know I’d have to do a full prick test and intradermal test to identify all my allergies, which I had never done before.

I could’ve sworn I had told my mom about my appointment plans, but after the fact, I remember her saying she would never have advised me to do a prick test, only blood work, because then I wasn’t being injected with potential allergens directly. I knew she would have offered to come with me, but I felt brave, excited, and even empowered to find out my exact allergies and be able to pinpoint my reactions. I didn’t want to make it a hassle for anyone to take off work, and I never would’ve imagined the visit would take a dangerous turn.

I was tested for about 76 different allergens, via prick on my back and intradermal on my arms, and let me tell you, I don’t know if all intradermal tests are this way, but this one hurt! I was bleeding, and I remember thinking that the needles went into my skin deeper than I’d assumed. I was marked up in permanent purple and black marker all over, making my upper body looked like one of a drug addict.

I had let them know I did not need to be tested for peanuts, as I was severely allergic and already carried epi-pens for it. So extremely allergic, that if they brought peanut butter into the room, I would begin showing symptoms of a reaction. They wanted to test me for peanuts anyway, saying that I may not actually be allergic to the actual peanut, it could be the fungus that grows on it instead, or something like that. I let them know I was not comfortable with it, and they assured me it was alright and important I be tested since I had never had allergy testing before. I eventually was talked into being tested for peanuts by a few doctors or nurses there. They explained they wanted to do a prick test on the underside of my forearm where they would be able to differentiate it from the rest of my testing. To this day, I don’t know why I didn’t leave the allergist right then. I felt like I didn’t have the choice, when I absolutely did.

A few minutes later, they let me know I was not allergic to peanuts. It seemed crazy, but I saw it with my own eyes as well- my arm had no reaction whatsoever. Around this time, they let me know I was highly allergic to cockroaches, dust mites, birch trees, oak trees, mold, and some other environmental allergens, based on the large welts on my back and arms. I wasn’t going to let them breeze past this new information though, I knew this peanut diagnosis was incorrect. I explained that I am very allergic and also baffled, but that it’s not right. They wanted to test me a second time for peanuts. I was feeling a little strange, but chalked it up to stuck by a ton of needles and uncomfortable with the situation.

They tested my same arm a second time, this time closer to my wrist, and left the room. I still could see no visible signs of a reaction on my arm, and there never was one. I regrettably posted a very confused facebook status about not being allergic to peanuts, and was on my phone taking pictures of my arms and back with a weird puppy poster behind me, when suddenly I was overcome by a strange sensation moving up my spine into my head. The last thing I remember is walking out of the room into the hall and asking a nurse for help because my vision was going out and I was getting very faint and hot. I knew what was happening, she knew what was happening, but there was no way for me to stop it. I was adamant about always carrying my epi-pens, but I didn’t even know what direction I was looking in after going to call for her. I know I had a near death experience.

Next thing I knew, it felt like I was underwater, and everything went pitch black. I’d lost my hearing and could literally feel the insides of my ears swelling. I recall the staff helping me lower myself onto the table as my vision went fully out from pressure. Everything was silent. I couldn’t hear or feel myself breathing. I couldn’t feel the usual weight of my body or my extremities. I felt very calm and honestly, I felt like I was dying and making peace with everything in my life up to that point. I had some type of experience where I saw myself floating away from my own body into darkness, it almost looked like someone floating in outer space.

Suddenly, and I don’t know how long I had been out, I’m estimating 15 minutes after they had administered 3 epi-pens and a steroid shot, I could see the ceiling lights above me. I still couldn’t hear anything, but I knew I was regaining my vision. I was thrilled but also concerned, since I could see my extremities were an unnatural purple-grey color. Everyone around me was celebrating, there must’ve been at least 5 people assisting me in the room. I was drenched, and immediately had to use the bathroom and let them know. I realized my hearing began to come back and they had me sit up and take oral steroids out of a medicine cup. I am awful at swallowing pills, but I threw them back without water. I remember one of the first things I heard the nurse say to me was that, “this was the absolutely best place to go into anaphylaxis” and that they had to give me 3 epi-pens. They wanted to monitor me there to make sure I didn’t need a 4th, which they warned me would likely put me into a heart attack. I remember calmly accepting the news about that. They let me walk into the bathroom very slowly and I had to leave the door cracked. I looked into the mirror and felt my face, which was getting coloring back, but I looked awful, like a zombie.

They told me that sometimes on the specific part of my forearm where they tested, “false-negatives” can occur on the skin, which made me immediately question why they ever would’ve given me the prick test there. I’m sure they were trying to keep it away from my other allergens being marked, but it seems like such a risky location. I also learned that I was not a candidate for allergy shots in the first place, and that receiving them wouldn’t have been able to lower my histamine levels for my peanut allergy in the first place. So basically, the whole reason I went was not even an option, and could’ve been avoided.

I stayed in the office well past their closing hours, somewhere around 7 hours total, I later calculated. It is all a blur that I wish I had documented more carefully. They let me drive myself home. I immediately called my mom, and she was horrified. She asked if they took me to a hospital, and I said no, realizing this seemed a bit odd. “They didn’t call an ambulance?” No. I was prescribed a steroid for 30 days, and instructed to take Benadryl regularly for at least the next 5. The following day I remember my roommate and his mom checking on me, and I was depressed. I didn’t know what had happened, if I should be happy, sad, or angry. Sleeping on steroids virtually didn’t happen, and the next 30 days were a real struggle.

I paid over 700.00 for that visit. I tried to dispute it and they wouldn’t negotiate with me, and told me I’d signed all my rights away while there in the initial paperwork. I am not the type to sue, but it has crossed my mind for many years now. I still have an outstanding balance with them for 80.00 that I don’t plan on paying, they told me that I can’t come back unless it’s paid, which I am a-okay with.

I honestly feel lucky to still be alive, and from this and many other experiences, I have learned how to better stand up for myself. I never have to accept medical treatment or testing that I don’t want. I tend to base a lot of my peanut-related actions on my intuition, because you know yourself and your body best. I also will never hesitate to run things by my mom now, she has been advocating for me since day 1, after all.

This story I wanted to share with others, not only because of the potential allergist experience others may be able to avoid, but it also marks a turning point in my allergy. Before this visit in 2013, I knew I was airborne allergic to peanuts and needed to watch out for cross-contamination, but didn’t really know either were a real thing. I’d never heard of people experiencing airborne allergic reactions, or having to be careful of trace amounts, but I did.

I did read labeling extremely carefully for ACTUAL peanuts, but was not nearly as knowledgeably about the potential risks of ‘may contain’ as I am now. After going into anaphylaxis at the allergist’s office, my reactions were stronger and I could feel my sensitivity growing. I was reacting often to what I now know were cross-contaminated products, and airborne/peanut-dust exposure. Instead of having my normal hives or gastrointestinal symptoms, I would experience other symptoms like facial numbness and swelling. Within the following months, I began researching labeling laws in the U.S. and slowly began cutting out items that weren’t labeled for peanut products. I will admit, this process took me a long time to fully commit to. I didn’t have peanut allergy Facebook groups to refer to like I do now, or a trusting allergist to ask, so I took it upon myself to create my own rules based on allergic reactions.

Only after having 2 other severe reactions around 2014-2015, which included being rushed to a hospital for a steroid injection, did I fully decide to cut out items that were made on shared equipment as peanuts, that ‘may contain’ peanuts, or weren’t labeled. It sounds simple, but since food manufacturing companies don’t have to label, this means I am often contacting companies to ask about their facilities, and getting a lot of non-answers. It is a daunting task, and I still struggle to not get discouraged about having to do this. I’m really lucky, because my friends and family have started helping me with this task as well, and there are Facebook resource groups, blogs, and forums online that also post this helpful information. Even if I just have a lead on a company that labels, that is better than having nowhere to start.

It sounds silly now that I was acting so risky before in my actions, but 5 years ago the peanut-allergy community wasn’t large enough for me to find. I’m so grateful now for its existence, allowing me to connect with other individuals with severe peanut allergies or with family members with peanut allergies. I’ve learned so much, and it’s impossible for me to say that I did it all on my own. There may not be official peanut-free guarantees, but there are many more resources out there now than there were when I was a kid, or in 2013, and I hope my blog can serve as an additional resource for anyone who needs one. Thank you for reading, and I’ve now added a ‘resources’ page to my site that includes my own personal ‘may contain’ food item list for peanut products that I hope can be of assistance!

-Zoë

One thought on “05/23/2013

  1. Edited on 8/16/17: I edited the above to differentiate the two types of testing done- intradermal testing and prick “scratch” or “puncture” testing. I was tested for peanuts with a prick “scratch” test only, the testing in my above photo shows intradermal.

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