February 27th2016, started out as any normal Saturday. I slept in. I woke up. I went and got my hair highlighted and cut. I got might eyebrows waxed. I went to lunch with my dad and his girlfriend. I went home and had a nap. But I woke up from the nap because I was really REALLY itchy. When I finally woke up enough to become coherent I realized that for the first time ever, I was breaking out in hives from head to toe.
We called my hair stylist to see if maybe we had used a product. She said we hadn’t. I hadn’t eaten anything I hadn’t eaten before. We hadn’t bought any new products at home. We couldn’t for the life of us figure out what could be causing these hives…
Little did we know that this outbreak would be the onset of an outbreak at least once a day, if not more…not quite this severe but just as annoying. After about a month of breaking out in hives daily, I finally scheduled an appointment with an allergist & immunologist, Dr. Prochnau. They asked me not to take any allergy medications (Zyrtec, Benadryl, etc.) 2 weeks prior to my appointment.
At our appointment, Dr. Prochnau performed a skin prick test of over 36 food allergens. After he pricked my skin with all 36 allergens, he left the room for 15 minutes to give them time to react. I will never forget his reaction upon re-entering the room…
(I am on the exam table in a gown which is open in the back so that they could perform the test and my leggings facing the rest of the room/door. My dad is sitting next to the exam table in one of the two chairs next to the computer to my left. The door is to my right):
Dr. Prochnau: *knocks at the door*
Tricket: come in
Dr. Prochnau: Alrighty, lets see how… WOAH, well… that’s probably not likely…
Dr. Prochnau: Well, this shows that you are pretty severely allergic to everything… You must be pretty miserable right now huh?
Trinket: Very… Thank you.
Dr. Prochnau: I am going to step out so you can get dressed and then I will be right back so we can discuss where we go from here..
(Dr. Prochnau steps out)
Dad: His eyes couldn’t have bugged further out of his head
I then turned around and let him see what Dr. Prochnau had seen and he understood why the doctor’s eyes had bugged out of his head… what once had looked like 36 individual pokes had turned into one giant welt and I was beginning to break out in hives from head to toe…
After I got dressed and Dr. Prochnau returned to the room he said that he didn’t think that it was likely that I was suddenly so severely allergic to everything (especially since I was still able to eat those things without going in to anaphylaxis). He was pretty confident that I wasn’t allergic to those things as all, but instead that my immune system was over reacting to little thing. To be sure, he asked me to continue to hold off on the allergy medication just a little while longer so that we could go down to the lab and get some blood tests drawn.
Those blood tests showed that the only food that I am allergic to is egg whites and that I do not have a condition called chronic urticaria (chronic hives). Instead, it showed I have a condition called Mast Cell Activation Syndrome (MCAS). In a “normal” body, these cells reside in every tissue cell and are activated whenever there is an allergic reaction or an injury. But in my case, they are overactive. They are attacking foreign bodies that I am not allergic to.
We are currently treating this condition with 2 tablets of Zyrtec at bed time and 2 tablets of Zyrtec at lunch time, 1 tablet of 150mgs at bedtime and 1 tablet of Zantac 150mgs at lunch time and 10mgs of Singular at bed time. Unfortunately I am still breaking out in hives every single day so I am caring Benadryl and Pepcid with me everywhere I go. I also had a pretty scary almost anaphylactic event while in the ER for an adrenal crisis a couple months ago so now I am also carrying Epic-Pens with me as well.
Last week (August 2018) I met with a Geneticist at Peyton Manning’s Children’s Hospital and he diagnosed me with two major conditions that are often linked to MCAS so he referred me to an incredible allergist and immunologist at RUSH Medical in Chicago and I will see her in October.