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 advocating for themselves, and also help spread the word about false-negatives in allergy scratch tests, and to never agree to skin allergy intradermal testing for a life-threatening allergy.
I made this blog header image an emergency room, because you’d think that is where I would’ve been taken after going into anaphylaxis, and that IS where you should go if you have signs of anaphylaxis or if you have epinephrine used, so your breathing can be monitored. However, in May of 2013, I was released to drive myself home after going into anaphylaxis where I was unconscious and had multiple epi-pens and other medications given to me. I am sharing my story here in hopes that it can help others with food allergies, because as you’ll learn here, unfortunately not all allergist offices are created equally and not all are operating based on the best interest of the patient.
Anaphylaxis on 05/23/2013
A few weeks before May 23rd, 2013 I was told by my primary care doctor (PCP) to see an allergist about getting allergy shots to lessen my overall allergic responses to environmental allergies and peanuts. The allergist was surprised I had never had official allergy testing done, I was 23 at the time, and they let me know I’d have to do a full prick test and intradermal test to identify all my allergens.
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. This makes sense… hindsight is 20/20. I knew my mom would have offered to come with me, but I felt brave, excited, and even empowered to find out my exact allergic triggers and be able to pinpoint my reactions better. At this point in time, I was unaware of cross-contact, and felt my allergic reactions were out of control and extremely unpredictable. This horrible anaphylaxis experience is what led me to finding out more about cross-contact, and realize that my allergic reactions were actually very predictable, and were all related to trace amounts of peanuts being undeclared in food I was eating. The day I went to the allergist, I didn’t want to make it a hassle for anyone else to have to take off work, and I never would’ve imagined the visit would take such a dangerous turn.
I am not a doctor so I have limited knowledge about how this works, but based on my paperwork I can see I was tested for about 76 different allergens via prick on my back and intradermal on my arms, and let me tell you, it hurt! I have a high pain tolerance, and I was bleeding from the testing, and I remember thinking that the needles went into my skin deeper than I’d imagined they would. I was worried the person doing it wasn’t doing it right, because of the amount of pain. I was looking down at myself marked up in permanent purple and black marker all over, making my upper body look unrecognizable to myself.
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. I told them I was 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 not only safe, but important that 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, saying it was routine and normal to be tested for your known allergen. They explained they wanted to do a prick test on the underside of my forearm for peanuts, so 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 to say no, 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. Meanwhile, other areas of my body were definitely showing reactions to other allergens. Around this time, they let me know I was highly allergic to cockroaches, dust mites, birch trees, oak trees, mold, ragweed, grass, 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 that I “wasn’t allergic to peanuts” because I knew this was incorrect. I explained that I am very allergic and also baffled, but that their test is not right. They assured me the test was correct, and said to be sure they wanted to test me a second time for peanuts. I was already feeling a strange sensation in my body, but chalked it up to being stuck by a ton of needles and being uncomfortable with the situation. I was in a state of shock at this time being told I wasn’t allergic to peanuts when I knew I was.
They tested my same arm a second time, this time closer to my wrist, and then they left me alone in the room. I still could see no visible signs of a reaction on my arm, and there never was any. Trying to distract myself from being scared, I got on my phone and posted a very confused Facebook status about not being allergic to peanuts, and started taking pictures of my arms and back with a weird puppy poster behind me, laughing and sending it to friends but also saying, “check out these reactions happening on my back!”. Suddenly I was overcome by a strange warm, tingling 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 to see where my purse was.
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, and then the backs of my eyes swelling. I remember feeling the staff help to lower me onto the table as my vision went fully out from pressure. Everything was silent. Everything was black. 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. I was looking at myself 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 occasionally as I blinked my eyes. 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, and I couldn’t move them or any part of my body. I was completely still. Everyone around me was celebrating, there must’ve been at least 5 people assisting me in the room. I was drenched in sweat, and immediately had to use the bathroom and let them know I felt like I was going to be sick. I realized my hearing was coming back and they had me sit up and take oral steroids out of a medicine cup. I am known in my family as being terrible at swallowing pills, but I threw them back without water. I remember one of the first things I heard the nurse say excitedly to me was that, “this was the absolutely best place to go into anaphylaxis” and that they had to give me 3 epi-pens (I’ll talk more on this comment made by the nurse in a moment).
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, since epi-pens are epinephrine– another word for adrenaline. I remember calmly accepting the news about that. They let me walk into the bathroom very slowly and I had to leave the door open as I went to the bathroom. Afterwards, I looked into the mirror started to feel my face with my hands, as if I’d never touched my own skin before, my senses weren’t fully regained. I looked pale, but I could tell my face was getting its coloring back. I looked awful with dark eyes and my throat was still tinted with purple and black coloring. I looked 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 in the first place. I’m sure they were trying to keep it away from my other allergens being marked, but it seems like such a risky location. After this, they let me know that I was not a candidate for allergy shots, and that receiving them wouldn’t have been able to lower my histamine levels for my peanut allergy or any food allergy in the first place, they said allergy shots never are given to help for food allergies. 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. I was there 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 did seem a bit odd. “They didn’t call an ambulance?” No. I was prescribed an oral steroid for 30 days, and instructed to take Benadryl regularly for at least the next 5 days. The following morning, I remember my roommate and his mom checking on me, and I was totally out of it and I could hear my own tone of voice sounding depressed. I didn’t know what had happened, if I should be happy, sad, or angry. Sleeping on 30 days of steroids virtually didn’t happen, so those 30 days were a real struggle.
I paid over 800.00 out-of-pocket for that visit, after what my insurance covered. I tried to dispute the 800.00 and questioned not being taken to a hospital, they wouldn’t negotiate with me, and told me I’d signed all my rights away while there in the initial paperwork. I have the paperwork and I see where I did say they weren’t liable for any reactions. I am not the type to sue, but it had crossed my mind for many years after. 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 told them I am a-okay with since I don’t plan on coming back. They’re the same place that does OIT testing here in Louisville now, but I am not interested in that (I will do a separate post on OIT one day!) or going back to them, anyway.
Primarily, I feel lucky to still be alive. 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, and you don’t either. I tend to base a lot of my peanut-related decisions on my gut-feeling and intuition, because I believe you know yourself and your body best, but I will admit it can be hard to differentiate between anxiety and fear versus intuition. 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 somewhat airborne allergic to peanuts and needed to watch out for some products that didn’t contain peanuts in the label but somehow made me react, but I didn’t know airborne or cross-contact were even terms at the time. I’d never heard of people experiencing airborne allergic reactions, or having to be careful of trace amounts, but I learned from many reactions that I had to be careful of those things. In my experience, the more serious reactions I had, the worse my allergy seemed to get in terms of sensitivity to cross-contact and being more reactive airborne.
In 2013 and before, I did always read labeling extremely carefully for ACTUAL peanuts, this was something I was taught to do at an early age, but I was not nearly as knowledgeably about the potential risks of ‘may contain’ and cross-contact as I am now. I also now understand that everyone is different in the amount of an allergen it can take to cause a reaction, I used to think food allergies were cookie cutter and everyone reacted the same, and that is not the case. After going into anaphylaxis at the allergist’s office, my reactions became stronger and I could feel my sensitivity growing. I began reacting to food items that I now know where likely contaminated at the facility level from shared equipment with peanut ingredients. Instead of having my normal hives or gastrointestinal symptoms I was used to dealing with, I began experiencing other symptoms like facial numbness, eye and cheek 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, Instagram, or the Spokin App to refer to like I do now. I also didn’t have a trusting allergist to ask, so I took it upon myself to create my own rules based on what I knew in my body to be true. There’s still a lot my body teaches me about my allergy!
Other Severe Allergic Reactions
Only after having 2 other severe reactions in 2014 & 2015, which included being rushed to a hospital for a steroid injection, oral medicines, and hours of monitoring, did I fully decide to fully cut out items that were made on shared equipment as peanuts. I cut out items that stated ‘may contain’ peanuts, and wouldn’t eat items that weren’t labeled with information about the allergens in the facility. It sounds simple, but since food manufacturing companies don’t have to label for allergens on shared equipment or in the facility, this means I am cold-calling or emailing companies to ask about their facilities, and getting a lot of non-answers or delayed answers in return. It also meant no eating out at restaurants or bars until I understood this food labeling space better. It was a daunting task, and I still struggle to not get discouraged about having to do this on everything processed that I eat, but it has gotten much easier with time. I love the store Trader Joe’s and am happy the city I live in, Louisville, KY has one, because their product line will tell you about allergens in the facilities of items. I do consider myself lucky, because my friends and family have started helping me with this task when I need them to (i.e. around Thanksgiving for example!). There are also Facebook peanut/tree nut resource groups, blogs, and loads of online forums that post this helpful information (I linked two of my favorites there for you!). Just having a lead on a company or brand that labels, or once was peanut-free in the past, is helpful vs starting from ground zero and cold-calling random brands.
It may sound careless now looking back that I was acting so risky before in my actions, but years ago the peanut-allergy community, and food 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 food and 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 by most companies, but there are more and more dedicated allergen-free and top 8 free companies popping up all the time, and there are many more resources out there now than there were when I was a kid, or in 2013, even! I hope my Invisibly Allergic blog can serve as an additional resource for anyone who needs one. Thank you for reading my story!
Peanut Allergy Resources
I do have a built out ‘Resource’ page which I update every so often with food brands I’ve enjoyed, companies doing great work to support the food allergy community, and other authoritative sites to follow for resources. I hope they can point you in a helpful direction!