Hey ya'll!
My name is Amber, I'm 28 and very very very FRUSTRATED
! I have been battling with what I thought was an unknown food allergy since college 2003. I seen an allergist in Michigan who skin tested me for food allergies and did a scratch skin test. Both tests came back positive. He didn't think it was a food allergy so he had recommened me seeing and autoimmune specialist/hematologist to be worked up for mastocytosis. I didn't flow up with either because shortly after that appointment I had to move south for my husbands job.
Once I was settled here I found another allergy specialist who did some bloodwork for food allergies and gave me a script for a tryptase level to be drawn 2-4 hours post reaction. My bloodwork for food allergies was negative and on april 27 i landed in the ER with an allergic reaction. They drew my dang tryptase level as soon as I got there instead of the 2-4hr post reaction window. Sooo needless to say that came back negative (low). My doctor then basically said he gave up he didn't know and referred me to a GI doctor.
I have a friend back home that is a GI doctor and he insists I get worked up for masto based upon my symptoms. I mentioned this to my current allergist and he asked me, "do you break out in hives if you scratch your skin?" I said no? I told him that I dont break out in hives, but it stays red and raised for a long time and is itchy at the site. He said then I don't have Masto.
Here is what causes these reactions:
Food mainly when I go out to eat, stress, anxiety, mixing hot and cold food or drinks, hot weather, and exercise.
Symptoms:
Starts out with TERRIBLE and I mean TERRIBLE belly cramps hurts so bad. When I get the cramps its like a warning I know I have 5-15 minutes maybe 20mins if i'm lucky to find a bathroom. I then get diarrhea with the cramping. It then moves into my resp track my chest gets tight, I get congested and wheezy. I break out in a rash usually starts on my chest and neck goes to my thighs, butt, arms , belly ,and back. My heart races out of control, I get flushed and dizzy. This all lasts for hmm anywhere 35-45mins and the wheezying for hour or so.
Ever since these reactions i've had to start taking 100mg of toprol to control my heart rate, i take OTC meds for what feels like consistant headaches, and I've tried xyzal which was a waste of time didnt stop my reactions or make them less frequent. I carry an epi-pen just in case.
I noticed that if I take 25mg of benadryl about 30mins before i eat, 25 with my first bite and 25 after dinner along with 3 tabs of immodium i can at least make my reaction not as terrible...however doesn't always work. If i know i'm going to the gym i load up on benadryl also. This is getting old fast. not only am I getting a tolerance to the benadryl but it makes going out with friends and date night with my husband a total drag. I am sick of worrying over whether or not im going to have a reaction and if there will be a bathroom avaliable. Sick of worrying if im going to spend the evening miserable in the bathroom embaressed.
So my question to ya'll is. Do you think seeing GI doctor will be a total waste of time? Should I pursue a hematologist? Should I get a second opinion from another allergist? Are these even symptoms of masto? Were you as frustrated as I am with finding out what in the H is wrong? I am over it!!!
ugh!