This will likely be the most difficult post to read on Invisibly Allergic, as well as personally the most difficult post for me to write– the story of the first and only time I went into anaphylactic shock and nearly died. I hope this story can help others stay strong when advocating for themselves regarding their food allergies, and also help spread the word about false negatives in allergy scratch tests, and to never agree to skin allergy intradermal testing to test a life-threatening allergy. I want to cover allergy testing and what to expect, how to prepare, and share my experience.
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 and if you have used an epinephrine injector. This is because your breathing, oxygen levels, and signs of another reaction need to remain monitored. However, in May of 2013, after going into full-blown anaphylaxis, I was released to drive myself home in a daze after I’d been unconscious and had multiple epi-pens used on me. I am sharing my traumatic, medical malpractice story here in hopes that it can help others with food allergies avoid the experience I had at the allergist for allergy testing. As you’ll learn here, unfortunately, not all allergist offices are created equally and not all are operating based on the best interest of their patients.
Anaphylaxis On 05/23/2013
In April 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 possibly help my reaction level to peanuts. I did this and went to the most reputable allerist in my town, and the office 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 allergy testing procedure to identify all my allergens, including food 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, and to only do blood work, because she didn’t think it was advisable I be injected with potential allergens, especially peanuts, directly. This makes sense and 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.
“Cross-Contact” Wasn’t A Well-Known Term In 2013
In 2013 I was unaware of cross-contact, I don’t even think it was a used term yet, and this was before any real online food allergy communities were around like the types we know of today in 2022-2023. Iif I had to describe my food allergy back then, I would’ve said that my allergic reactions were out of control and extremely unpredictable with no rhyme or reason. This horrible anaphylaxis experience is what led me to find 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 the food I was eating. This is due to what I am now very familiar with, the lack of FDA food labeling laws in the U.S. requiring transparency of potential undeclaired allergens. Right now in 2022, the requirements by the FDA are only that food manufacturers declare in bold on a product if it purposefully contains a top allergen. However, this doesn’t do anything regarding if your life-threatening allergen is on shared equipment lines and contaminates a product not purposefully containing it.
I discuss this more on this food allergy blog, as it’s a huge topic I’m passionate about changing in the U.S. so people can make educated and informed decisions around what they’re ingesting and putting on their skin. I discuss this a little in my post on the 10 Biggest Food Companies & my post on Non-Food Products That Contain Top 8 Allergens.
The day I went to the allergist in 2013, 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.
Looking Back With 20/20 Hindsight
I’m not a doctor or claiming to be, and I have limited knowledge about how food allergy and intradermal allergy testing works. Based on my paperwork I can see I was tested for about 76 different allergens via skin allergy prick test on my back and intradermal on my arms, and let me tell you, it hurt! If someone were to ask me “does intradermal allergy testing hurt?” I’d say YES IT DOES and urge them to instead consider doing a food allergy blood test panel instead of putting their body in contact with allergens. I consider myself to have a high pain tolerance, and I was bleeding from the testing, and I remember thinking that the needles went into my skin much 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 in. I was looking down at myself marked up in permanent purple and black marker all over, making my upper body look unrecognizable to myself.
Asking To Not Be Tested For Peanuts
I had let them know at the allergist that I did not need or want to be tested for peanuts, as I was definitely allergic and already carried epi-pens and benadryl for it. I told them I was so allergic that if they brought peanut butter into the room, I would begin showing symptoms of a reaction, such as a swollen lip. They wanted to test me for peanuts anyway, saying that I may not actually be allergic to the actual peanut, and that it could be the fungus that grows on it instead. 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 for peanuts 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. Multiple nurses and doctors came in and explained that 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.
They Told Me I Wasn’t Allergic To Peanuts
A few minutes after the test for peanuts on my arm, they let me know I was not allergic to peanuts in a very matter of fact way. They were laughing and saying “I know it’s wild but it’s true, you aren’t allergic to peanuts, so it must be something else.” It made no sense to me, 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 70+ allergens I was being tested for. 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 on my arm. 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 creeping 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 calling for a nurse for help me 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 couldn’t see my purse with my epinephrine in it, so even though I was adamant about always carrying my epi-pens, I didn’t even know what direction I was looking in. I was going into anaphylaxis from the peanut skin prick test.
My Body Going Into Anaphylaxis: A Delayed Reaction To Allergy Testing
The next thing I knew everything went pitch black and it felt like I was drowning underwater. I’d lost my hearing and could literally feel the insides of my ears swelling, and then the backs of my eyes swelling with pressure. 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 like I was looking at my body floating away from me in outer space.
Suddenly, and I don’t know how long I had been out, I’m estimating 15 minutes based on what they told me, I started gaining awareness. It turns out, after they had administered 3 epi-pens and given me a steroid shot, I could see the ceiling lights above me occasionally as I blinked my very heavy feeling eyelids. 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 a deep purple-grey color, and I couldn’t move them or any part of my body. I was completely still lying flat on the exam table in the same room I had the testing done in.
Everyone around me was celebrating, there must’ve been at least 5-6 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 absolute 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 epi-pen, which they told me verbally could 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. Afterward, I looked into the mirror and began to feel my face with my hands, very slowly, as if I’d never touched my own skin before. My senses weren’t fully regained and I didn’t have much feeling on my fingertips or my face. I looked pale and had dark raccoon eyes, but I could tell my face was getting its pink-olve coloring back and less grey undertones. I looked awful and my neck was still tinted with purple and black splotches. I honestly looked like a zombie.
Learning About False-Negatives
After returning to the room, the nurse told me that sometimes on the specific part of my forearm where they tested me for peanuts, “false-negatives” can occur on the skin. This made me immediately question why they ever would’ve given me the prick test there in the first place for my life-threatening peanut allergy. I’m sure they were trying to keep it away from my other allergens being marked, but it seems like such a risky location and oversight. 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 based on what my PCP said was not an option, and this all could’ve been avoided.
Driving Myself Home
I stayed in the office well past their closing hours. I later calculated that I was there over 7 hours. This appointment was all a blur that I wish I had documented more carefully. After I was able to walk around and looked more normal, they told me I could drive myself home. I immediately called my mom from my car, 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 told her that I was prescribed an oral steroid for 30 days, and instructed to take Benadryl regularly for at least the next 5 days. I wasn’t told about delayed allergic reactions and additional anaphylaxis potential, or any allergy testing side effects. When I got home to my apartment where I had roommates, they were totally shocked by how I looked, with the dye all over my arms and dark eyes, and couldn’t believe I drove myself home. 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 utterly depressed. I didn’t know what had happened, if I should be happy, sad, or angry. Sleeping during those 30 days of steroids virtually didn’t happen, so those 30 days were a real struggle.
I terms of the cost of the allergy testing procedure, I paid over 800.00 out-of-pocket for that visit, after what my insurance covered. Had I not had health insurance, I can’t imagine what the skin allergy test costs would’ve been. 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 actually 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 putting my body into reactions or going back to them, anyway.
The Importance Of Not Accepting Medical Treatment You Aren’t Comfortable With
Primarily, my takeaway from this experience is that 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!
My Food Allergy Becoing More Severe Post-Anaphylaxis
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 much more. 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 allergic 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 knowledgeable about the potential risks of cross-contact and ‘may contain’ statements 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, it is a food allergy spectrum. After going into anaphylaxis at the allergist’s office, my reactions became stronger and I could feel my peanut sensitivity growing. I began reacting to food items that I now know were 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 swelling, throat and cheek swelling. Within the following months, I began researching food 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’m talking years! At the time there weren’t peanut allergy Facebook groups, Instagram, or the Spokin App to refer to like I have 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 today that my body teaches me about living with a life-threatening peanut allergy.
Other Peanut Allergic Reactions
After having 2 other life-threatening peanut reactions in 2014 & 2015, which included being rushed to a hospital for a steroid injection, oral medicines, and hours of monitoring, did I decide to fully cut out items that were made on shared equipment as peanuts. It wasn’t easy, because this meaned I had to contact each product company before buying and eating the product/food item.
I began to 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. Since food manufacturing companies don’t have to label allergens on shared equipment or in the facility, I was doing what I still do now in 2022-2023 and was cold-calling and emailing companies to ask about their facilities ingredients. I was frustrated due to getting a lot of non-answers and delayed answers. 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 and I know brands to look for in stores that are often peanut-free facilities.
I love the store Trader Joe’s and am happy the city I live in, Louisville, KY has one, because their product phone line will tell you about allergens in the facilities of items- I list this as a resource in my Resources tab among other helpful documents and links. I 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!). Having a lead on a company or brand that labels can make the process of finding a facility without peanuts in use much more efficient and less time consuming versus contacting brands at random.
It may sound careless now looking back that I was acting so risky before in my food eating actions, but years ago, the peanut-allergy community and food allergy community weren’t large enough for me to find. I’m so grateful now for its existence, allowing me to connect with other individuals with life-threatening food and peanut allergies that fall all across the food allergy spectrum. I’ve learned so much from these interactions with others, and gained so much confidence from their validation of having the same experiences as me, and so it’s impossible for me to say that I made all my food allergy progress on my own.
While there is not transparent labeling at the facility level for allergens in facilities, and there’s often not an official peanut-free guarantee by most companies, just that they don’t currently use any, these measures still help me not have many reactions to peanuts at all anymore. In fact, I hardly ever have food allergy reactions now. One great thing I’m noticing more and more is that there are companies going the extra mile and becoming dedicated allergen-free and top 8 free facilities. I hope my Invisibly Allergic food allergy blog can serve you as an additional food allergy resource. Thank you for reading my story!
- Can you go into anaphylactic shock from allergy testing?
Yes. This is why I’m an advocate for getting food allergy and allergy bloodwork done instead of putting yourself in contact with potential life-threatening allergens via allergy skin tests (scratch tests, intradermal allergy testing on back, skin prick allergy test, etc.)
- What are the 3 most common substances that cause anaphylaxis?
Foods (such as the top 9 allergens), medications (such as some antibiotics and non-steroidal anti-inflammatory drugs), and insect stings and bites (most common are wasp and bee stings).
- What are the 3 criteria for anaphylaxis?
There are 3 defining criteria of anaphylaxis are low blood pressure (hypotension), constriction of the airways (a swollen tongue and/or throat), and a rapid and weak pulse.
- What percent of allergic reactions are anaphylactic?
An AAFA study printed in the Journal of Allergy and Clinical Immunology (JACI) found that anaphylaxis occurs in about one in 50 Americans. However, many believe the rate is higher than that and is actually closer to being one in 20.
Invisibly Allergic Food Allergy Blog: Food Allergy Resources
I do have a built-out ‘Resources’ tab 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 also offer free and paid food allergy consulting. A great book to check out regarding food allergy testing is Food Without Fear, which I recommend in my book recommendations blog post among many others.
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