Posted 8/2/2008 12:48 PM (GMT -7)
Me too. . .
Hi, sorry that you are having the negative tests with the anaphylaxis experiences! I am in the same boat, and have been for about 14 years. I started having anaphyl. reactions to specific food groups (seafood) about 14 years ago, and since then I have added in a few other foods, but I stay away from similar foods just to be sure (IE: reactions to mango, but I stay away from tropical fruits as well.)
I went to the allergist and did a complete skin work up -but did not have a typical reaction! They pricked my skin with approx 3/4 of the allergens, NOT including known problems for me (I can just touch something that has had a seafood product on it, and I'll have an immediate and severe anaphylactic reaction!). . . but when the nurse put the "control" prick into my arm, I started to swell up in that arm and then quickly moved into anaphylaxis! They wiped my arms down to get any other allergens off me and then gave me an epi shot! The reaction slowed, and then rolled back and came on again, so I got another epi pen within about 10 minutes of the first one (wheeee- that was not fun!). They gave me 2 steriod shots in my lower back area to block the histamine reaction from going through my body. . .all the while stating "that has never happened in 20 years of practice" as my heart is beating out of my chest! Then comes rolling reaction #3, and that is when they called 911 (that's right, the allergy doctor had to call for the EMS!!) and they gave me yet a 3rd epi shot. Talk about freaking out! As the EMS wheeled me out, I caught a glimpse of the other patients waiting in the office, and I remember thinking - "wow, I'll bet they are scared to go in and get their testing/shots done now!!" :) When I got to the hospital I was given good old benadryl, and something else, I can't remember, via IV. I settled down later that night and they finally released me once they were sure that I wouldn't react again. Funnily enough, none of the spots on my arm that were pricked were swollen or indicated any allergy, except of course the histamine "control" sample - my arm was huge and swollen from that point.
So the Dr. called me back to come in after 1.5 months (steriod treatment between, plus waiting for my system to normalize between reactions.) She was sure that the blood test would clarify the problem, with the obviously severe allergic reaction. And the answer? Nothing. It ALL came back clear. NOTHING! It was the weirdest thing.
She gave me 4 epi pens to carry with me, plus an inhaler (the anaphylactic reactions cause immediate breathing issues for me) - and basically said that I should self-monitor my foods and any exposures, and to NEVER be skin or "challenge" tested again, due to the severity of the reaction! Yikes! She also prescribed, if you could say that, a medical alert bracelet. I will never take it off - I am allergic to iodine (anaphyl reactions when I was swabbed by tech!!) and if I am unconscious I know that EMS and hospitals routinely use iodine to swab/clean for invasive procedures. . . It will kill me, so I keep the bracelet on at all times!!
Since then I have had a few new "additions" to my reaction, and I don't ever expect them to go away. My doctor was a very respected allergist in my area, with a long successful practice that also participates in research, etc, so I felt very secure in the experience (ok as much as you can when they almost kill you. . . )
If I were you, I would say that you "know your body best" - and if your body says you are allergic, then you ARE, regardless of any test neg/pos. Call it an allergy, insist that those around you help you to stay away from anything that has caused a reaction for you in the past, and be hypervigilant about what you allow yourself to be exposed to when you are not the one preparing your own food! :))
Good luck and know that this IS manageable, but after having an anaphylactic reaction, you know how little you want to do that again. . . hang in there!