I am not diagnosed with Masto yet, but am still doing testing in the next few months. I just started taking meds for MCAS last week and wonder if the meds will effect the results of my biospy in December?  Should I wait until after my tests to take all these meds so I can get an accurate diagnosis? Or does the mast cell burden stay the same no matter what you do?  What about Tryptase levels, will they come down?  (Mine is a 23 right now.)

Thanks the Mast Cells were my main concern as I don't want to waste money and time looking for them and get a false negative. Do you know if the Tryptase will go down. Mine has gone up from 20 to 23 in the last 11 months. I just started meds on an every day basis.  Will the meds make the tryptase go down or will it continue to rise no matter what I do?

I am one of the few with MCAS with an elevated Tryptase. My Tryptase is was at 20 and now it's at 23 less than a year latter. I am starting to wonder if I am misdiagnosed and really have Mastocytosis?  I was diagnosed by my allergist and although he has been great, he doesn't specialize in such a rare disease.

Let´s take a look at Tryptase and what it means.  

According to some very recent research, tryptase reflects IgE reacting, anaphylaxis and MC burden as well a a few very serious conditions like Renal Failure and Myelodyplastic disorders.   Because of the fact that researchers are now looking at the mast cell  as part of other pathologies, they are finding that tryptase is part of those conditions like aortic aneurysms.    I read a recent article, which is called:  

Transient receptor potentials (TRPs) and anaphylaxis.
Smith PK, Nilius B.
Department of Clinical Medicine, Griffith University, Postal Address 5/123 Nerang St, Southport, Queensland 4215, Australia


I spoke with the author and he informed me that when the TRP "receptors are "primed" --- via excessive mast cell products - leukotrienes, prostanoids, proteases and histamine for example, then external chemical (or physical triggers such as heat / exercise) can cause sensory nerve activation and autonomic phenomena such as hypotension & tachycardia. Syncope can occur -- and you may not find a spike in tryptase like we would expect in IgE anaphylaxis."

This discovery may explain why some of us will NOT show elevated tryptase levels.  This is why the masto researchers continue to insist that there is a difference between a baseline and an acute measurement of the mediators.   An acute measurement means that there was a specific pathway which triggered the release of trytpase and it´s a short lived situation.  It doesn´t mean that it wasn´t anaphylaxis nor does it mean that you don´t have masto, it only means that there is a whole heck of a lot more going on with this disease than the researchers thought they knew!  This is because for the longest time you had the camp of researcher who absolutely REFUSED to consider anything as a MC disorder which did not fit into the extremely tight restrictions of the WHO Criteria - why they themselves had established.  

You all need to understand the POLITICS behind this.  Those doctors who are "invited" to these conferences are those who are a part of the same vision as the leading authorities.  If you have a doctor/researcher who does not see things the same way, they won´t be invited and therefore their "voice and opinion" will go unheard even if they are considered an authority in the disease!   This will explain to you why Dr. Castells had to FIGHT tooth and nail in order to get MCAS recognized.  The "powers that be" had made their star reputations on the neoplasm and didn´t want to lose that clout.  They weren´t thinking about the patients, they were thinking about their careers.  It´s politics!   So, in establishing the WHO criteria for SM, they put up very restrictive criteria and refused to budge as far as anybody who did not fit into them.  Yet, thankfully there is the other group of researchers who have kept their minds open in considering the contradictions they´ve seen,  in not understanding why there are those of us who don´t show elevated tryptase and yet have all the signs and behavior of masto.    

As it turns out, research is now beginning to open up and prove that there´s more to this disease than meets the eye.    The tryptase may be low for more than just one reason.  They suspect that it can be a case of pre-SM, which may be indeed your case Lynda as well as my own case.  In these cases when the patient doesn´t show high elevations of tryptase and the measurement is that of a baseline measurement, then they keep an eye because it may slowly creep up as the masto matures into SM.  In these patients the lack of availability of the very sophisticated flow cytometry testing is what will prevent a final diagnosis.  There are only 3 or 4 labs in the world which do this testing and it´s very expensive and they won´t do it in a case like mine, however, in your case Lynda, they would.  

The other reason for the elevated levels is due to the IgE pathway.  If you have an MC disorder AND true allergies you are going to be triggering from both things.  All of this activity will raise your tryptase on a chronic basis even though it may not be high enough to be diagnostic for SM.  This would explain why this patient may show the quicker ups and downs like you are showing, femaillady.  If you had true SM, your MC burden would not reduce unless you were on cytoreductive medications like Gleevac, etc.  Remember, the chronic elevation of tryptase reflects the MC burden within the tissues and unless you are doing chemo or some other treatment it´s just not going to reduce even if you do gain some stability.    So, in your case, femaillady, I would think that you are showing IgE mediated allergies AS WELL AS MCAS and doing immune therapy would be very helpful to reduce the allergic activity and help calm your system down even more.  

Now about going off the meds, there are really VERY FEW reasons for going off the meds and no, they will not really affect your tryptase.  It might affect your histamine levels, etc, but not the trytpase, at least not if you are an allergy-free person.   This is why it´s important to do an IgE blood panel in order to see what you are allergic to.  If you rule them out and you have a tryptase above 1.0ng then you do indeed have something going on with you which is causing the tryptase to go above true normal.  


Confusing?  YOU BET!!!


Lisa

I think that makes sense Lisa. I have had extensive allergy testing and I am allergic to NOTHING. So if I understand what you are are saying, most likely my Tryptase will not go down even if I am on meds (except for Gleevac). This is because my Typtase level is based on my MC burden and not my Histamine.

Having been lurking here for a while, I'd just like to add occasionnaly BMB is absolutely necessary to provide the diagnosis by exclusion.  Also the some conditions that are intially diagnosed as SM/MCAS can, through diagnosis, be proven to be something else.  I'm a case in point. My initial diagnosis was SM-EOS; Trypaste level 145, subsequent further blood tests and BMB revealed FIP1L1-PDGFRa + HES/CEL - but presentationally, the dx diagnosis (and many of the symptoms) were indicative of SM/MCAS.  

By tryptase has taken a year to reduce from 145 to 11 now on Gleevec.  I still have 'allergy' problems, although I'm a lot better now that I was a year ago.  But, it is clear that there is a cross over between SM/MCAS and other hemopoetic disorders.  I spoke to somebody the other week in the waiting room at hospital who had a provisional diagnosis of MCAS (her tryptase was ~35) - but had not even been offered additional testing for other hemopoetic disorders in order to rule these out.

I think my post could be confusing... I'm saying MCAD is not a diagnosis of exclusion. MCAS is not so black and white.

Just to expound a bit on this statement.... the reason why doctors will say that a certain diagnosis is a "diagnosis of exclusion" is because they have to rule everything out in order to finally come down to the conclusion that this is what it is.  Deb's correct when she says that there isn't any one test we can take in order to "diagnose"  MCAS.   Yet the reason why everything else must be considered and first ruled out is because there are several very serious diseases, some life threatening which must first be considered prior to thinking that MCAS is the problem.

You see, doctors are up against a wall with diseases.  Most diseases have some kind of overlapping symptoms which make you think that it's one part of the elephant or the other and considering that the doctors are all blind and in a very large room where they have tons of groping about in the dark to do, it takes sometimes downright miracles of thinking to finally come upon a rare disease to first consider and then investigate and diagnose.    If you were to look through a microscope, the wrong end up into a dark room you might get an idea of just how difficult it is to diagnose a disease, especially a rare one.   Doctors just dont think of it cause they are thinking of the million and one other much more common things you could have!  This is why it can take so long for a patient to get answers for the doctor has to really force his brain outside of the box to even consider what you might have.   Then once he's done that, he's got to hunt it down.   And when you consider all of the more likely, commoner things you'd probably have, and easier to find, he's going to hunt in that direction!   And again, you MUST look first at those diseases which are most life threatening!  This is just good medicine because you've got to attack that which is deadly first since you have usually little time to do so!

So, MCAS, then, comes at the bottom of the list after ruling out regular allergies and simple endocrine problems, then moving on to hormonal imbalances and medication induced symptoms.  Then if those very common issues rule out it's on to Carcinoid tumors and NETs and then perhaps onto masto.  Once SM is ruled out not much is left excepting MCAS, which is why it's last of the lot to be confirmed and even then, the only reason why is because the patient didn't fulfill the SM criteria and was given MCAS as the "booby prize" shall we say.   I know, not very flattering, but then you are looking at it all wrong!  For those who have an MCAS diagnosis you should be saying, "WHOOSH, THAT WAS A CLOSE CALL!" and then pulling out the ginger ale to celebrate! (no champagne gang, it's a trigger!)  

Perhaps, someday, there will be a specific diagnostic marker which will diagnose MCAS, but this will only come after research can differentiate between it and SM and only then.  Until then, it's the backwards process - rule out SM and then consider MCAS.

I hope this helps clarify it a bit better.


Lisa