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Lisa
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Davina, your question about having masto "back when" is spot on!! Mast cell disorders are genetic. You inherited it. This is something you were born with but being that this is a very slow growing defect on the mast cell it can take YEARS before this will show up and that will also depend upon the defect the patient has. The researchers are also thinking that because there is more than one defect, depending upon that defect or how many you have this also influences when and how and to what degree the disease shows itself. There is still way too much we don't understand, unfortunately.
So, to answer your question I would not have any doubts that yes, you had masto back when...! My question is, however, have you ever had any IgE testing for allergies to these creatures? So often, out of our ignorance, we and even doctors will call something an allergy when in truth it may not be. You see, masto patients have been studied to find out how "allergic" they are. When I'm saying allergy I'm speaking IgE mediated allergies. Research found that masto patients are no more IgE allergic than any other patient group. This means that most of our reactions are coming from a different pathway.
Let me put it into easier terms. I grew up outside of Washington DC. I'm from inside the Beltway. Those of us who lived inside knew the back roads to take us into the city and we could avoid the beltway and the transit on the major roadways getting into town. Granted, the time it took was about the same regardless of going back roads or main highways! But the goal was to reach the city - pathways.
When you are talking about the immune system, and JillyBean is our resident immunologist here and she could give you much better understanding than I, but from what I've learned there are different immunological pathways which work inside of us. IgE is just one of them. When you have a true IgE mediated allergy you have antibodies which will float along and attach themselves to the receptors in the mast cell and when they are thus triggered, the mast cell releases it's contents spilling many different mediators (chemicals) which then create the reactions for these mediators have specific and different functions and they will cause specific reactions throughout the body. Some cause the itching and redness, others constrict breathing, others change the blood pressure, others create nausea and diarrhea. This is when you have way too many of these mediators being released. You see, many of these mediators are not meant to be released in massive amounts for they are toxins and their purpose is to be released in small quantities in order to kill off and protect the body from invaders and other things. There are also good mediators which our bodies need in order to maintain good function like in the case of blood vessel health.
So, with an IgE mediated allergy you have an antibody which comes along and attaches to the mast cell receptor and the mast cell opens up and releases its contents. Every time you have this done, the body creates more antibodies and thus the allergy gets stronger because then you have more mast cells being triggered and more mediators being released at once. This is why patients who are allergic to something like peanuts can get to be deathly allergic to even just the smell of peanut butter! Their are just so many antibodies that the body is overwhelmed immediately. This is why a true bee sting allergy can be lethal as well!
But when we are talking about a mast cell disorder, the problem with us is that our mast cell itself is defective. It misbehaves. This is because it is defective. This defect makes our mast cells trigger happy and they will trigger with things that normally nobody triggers over - heat, cold, exercise, food, chemicals, smells, sun, invasive medical procedures, medications, friction, and oh so very many more things! Bee stings are known to be lethal for some of us, and after the kinds of reactions other things have given to me, I've no doubt it could be lethal for me if I were to be stung!!
When I was a kid, I had some funny, odd reactions, even though I'd get a bee sting once in a blue moon and had no issues from them. However, once my masto became activated, I have become so very "pseudo-allergic" to so many things now that I live in fear of bees, something I never had reason to fear ever!
As to your recent anaphylaxis being so bad, I'm sorry that you had such a bad reaction. Davina, what triggered it? Can you tell me what happened, what the circumstances were surrounding it please? I may be able to help you find the pieces to the puzzle and explain what happened to you to help you avoid another such reaction.
You see, Davina, often, when we are new to this world of MC disorders, we do things that we would normally do that end up causing reactions that if we change our behavior we end up avoiding a repeat of that situation. The problem isn't allergies, it's a mast cell which is dysfunctional and triggers to things that normally would not trigger it. This means that what triggered you before might not trigger you under different circumstances, and what didn't trigger you before, could. You see, prior to my hysterectomy in 2007 nobody ever suspected I was sick. The year prior to that surgery things were going on which were hinting at underlying disease and in retrospect I can see incidents which for 10 years had been hinting at masto, but the surgery itself was the last straw and activated my illness. From this point on my body changed aggressively and I went from someone who never had an allergic reaction to anything but slight rashes to being so horrendously allergic that every medical procedure I do must be done in the operating room in order to keep me safe. I went from never having a single concern to now having to be overly cautious with everything, making sure that I'm never too hot, nor too cold, near bees, or in situations which create too much noise or aggitation! On a good day, I can eat almost anything I want, but on a bad day when I'm already reacting, if I do too much physically, stand in lines, eat tomatoes or chocolate, or whatever, I'll find myself getting into trouble and racing for the antihistamines. This is what a dysfunctional mast cell can do.
This is why you may not have bad reactions to certain insects, but then could find yourself at death's door if some chick came around with heavy perfume that showed up hours before she did!!!! It's not you having allergies that's the issue for then this would really not be a tricky disease at all. When you are IgE allergic, you can do some testing, find out what is triggering the reactions and totally avoid them and be a totally normal and functional person. But because in our cases the MCs are dysfunctional, depending upon your genetic makeup, you can be deathly ill one moment to one thing and then find that the next moment that thing won't cause you any trouble at all! This is what drives our doctors totally NUTS and us right along with them for there seems to be no rhyme, reason, pattern or excuse for what triggers us.
So, please, tell me what was happening around that situation which got you so sick and lets see if we can figure out what might be the cause of it. By doing this with me, I can help you see what motivated the reacting and this might help you learn what to avoid, if there's anything to avoid.
I hope this helps!
Lisa
ps - the article below are complex articles with tons of Greek, however, they explain the more than one mutation on the mast cells.
Comparative analysis of mutation of tyrosine kinase kit in mast cells from patients with systemic mast cell activation syndrome and healthy subjects. Molderings, G.J., Meis, K., Kolck, U.W., Homann, J., Frieling, T. Immunogenetics (2010) [Pubmed]
Multiple novel alterations in Kit tyrosine kinase in patients with gastrointestinally pronounced systemic mast cell activation disorder. Molderings, G.J., Kolck, U.W., Scheurlen, C., Brüss, M., Homann, J., Von Kügelgen, I. Scand. J. Gastroenterol. (2007) [Pubmed]
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When to use epi or go to ER? (Read 4453 times)
