Although my consult with the local allergist for mast cell issues was disastrous from start to finish, I'm glad to report that a few good things have come from it.
First, thanks to my frustration with the allergist's total lack of knowledge on systemic mast cell issues I made the decision to contact a "mast cell specialist" who authored a recent article on mast cell activation disorder. (MCAD) The physician answered my email almost immediately and gave me a very thoughtful response that essentially said "yes, it is likely that you have MCAD." Amazing. Just that simple. He sent many resources for me to share with my physicians and most importantly agreed to see me if I was willing to travel to S. Carolina, which I intend to do. He will act as the mast cell "expert" who determines treatment options but will also work in conjunction with my local gastroenterologist. I'm optimistic about this pairing and their ability to get me back to better health.
Second, the allergist ordered some of the specialized mast cell tests that are used as markers for systemic mast cell issues. I found out today that one of the tests came back abnormal. Specifically the urine N-Methylhistamine came back high. The normal range is 30 - 200 mcg/g Cr. My result was 370. Finally, maybe an answer to why I feel so awful. It looks like a systemic mast cell issue as I have been saying for nearly two years. I feel vindicated, relieved, justified and most of all hopeful.
The test had to go through the Mayo lab. Here is what the lab states about the test:
So there you have it. I still haven't heard from the allergist with these results. (I requested they be faxed to my gastro which is how I found out the results.) Given that he doesn't believe I have a mast cell disorder, I guess he's trying to figure out how to tell me that the result is meaningless, or in error, or some other equally ridiculous explanation.Increased concentrations of urinary N-methylhistamine (NMH) are consistent with UP, systemic mastocytosis, or mast-cell activation. Because of its longer half-life, urinary NMH measurements have superior sensitivity and specificity than histamine, the parent compound. However, not all patients with systemic mastocytosis or anaphylaxis will exhibit concentrations outside the reference range and healthy individuals may occasionally exhibit values just above the upper limit of normalf
The extent of the observed increase in urinary NMH excretion is correlated with the magnitude of mast-cell proliferation and activation, UP patients, or patients with other localized mast-cell proliferation and activation, show usually only mild elevations, while systemic mastocytosis and anaphylaxis tend to be associated with more significant rises in NMH excretion (2-fold or more). There is, however, significant overlap in values between UP and systemic mastocytosis, and urinary NMH measurements should not be relied upon alone in distinguishing localized from systemic disease.
I truly appreciate the support from members of this board to "dump" the allergist and move forward with a new plan of action. Your words did not fall on deaf ears and I did heed your advice. Thank you one and all for your words of wisdom.
I don't know where this journey will take me but I'm hopeful for the first time in months and that feels good!
Julie
