A spike in tryptase of  100 is anaphylaxis
Has anyone had such a spike how high did your tryptase go dose this only hapen with venom ige or dose the tryptase go up with food as well

The highest mine went with anaphylaxis was 40.

My last tryptase test was 500.  I've never had an anaphylatic episode.  This is one strange disease!!

Often it is the people who have normal or low tryptase levels (or who have MCAS or less severe daily symptoms) that seem to have anaphylactic attacks. Surpisingly, we hear that many who have high tryptase levels and more severe daily symptoms often don't go into anaphylaxis. I'm not sure of the reason for this, but one of my forum advisors might now and can chime in if they read this discussion.

We have to consider what are the mechanisms behind the anaphylaxis for there are many.   One is that of true allergies which means it's IgE mediated.  There there are other "immune" related mechanisms like IgG and high affinity IgE, and other anti-body related factors.  Then there is the direct MC degranulation which is the mechanism which masto patients go through, be they MCAS or SM or Cutaneous masto.  

Tryptase is how they measure mast cell activation.  A sustained, elevated tryptase at baseline proves chronic mast cell activation.  This is why they suspect mastocytosis when this is chronically elevated AT BASELINE.  

When in a crisis situation, when the tryptase is elevated then this indicates that the person was in anaphylaxis, no matter what the mechanism was which caused it to be elevated.  This included IgE mediated allergic anaphylaxis or non-IgE mediated anaphylaxis.  

However, after the crisis is over, then the tryptase should return to it's prior baseline.  

In mastocytosis, be it MCAS or any form of SM, our doctors ask that we do a measure of trytpase without being in a crisis to see what our baseline is.  They like for us to do more than one measurement.   This is what shows what our mast cell burden is within our bone marrow.  In some forms of masto, the baseline is within the "normal" levels, but this is no longer ruling out mastocytosis, because they are finding that some forms, which are non-aggressive, will not have highly elevated tryptase levels.  

But again, having a crisis level of tryptase does not necessarily indicate mastocytosis but is indicative of anaphylaxis whatever the motive of the anaphylaxis is.  This is relatively very common in comparison to a non-allergy related anaphylaxis.   This is why the doctors do so many tests on us for they need to rule out the more common things and testing for IgE mediated allergies is part of this.  


Now, to have your baseline tryptase levels slowly increasing going from normal levels up into the 20s and 30s and on up is concerning because this shows that the MC burden is increasing.   Anyone with a tryptase up into the hundreds is concerning for this can indicate that your MC burden is high and needs a good hematologist to evaluate your case.  This hematologist needs to be a specialist in mastocytosis and must evaluate the stage of your disease and whether you are at risk for going into a smouldering state of mastocytosis or into an aggressive state.   This is why the tryptase needs to be review every 2 years or so in order to keep an eye on your baseline and whether or not it is rising.

I hope this helps!

Lisa