I was very lucky to receive a diagnosis of mast cell activation syndrome from my first doctor, Dr. R., because technically, I do not fit all of the criteria for an official diagnosis.

The official criteria to receive a diagnosis actually include the following, as discussed in this article:

1. Symptoms of mast cell activation: “patients with a presumptive diagnosis of “MCAS” must have two or more of the organ manifestations of mast cell activation such as flushing, urticaria, diarrhea, wheezing.”

I did have this.  I had skin symptoms such as dermatographism as well as flushing and overall itching.  I also had diharrea at times. It was hard to say if I had more symptoms since mast cell activation can also, for example, increase stomach acid and cause acid reflux– which was a problem I already had previously.

2. Lab results that show elevated levels of what are called “mast cell mediators”– these are the chemicals released by mast cells, and when those levels are elevated, it means mast cells are overactive.  Technically, in order to receive a diagnosis, the patient needs to have these high levels documented on two occasions.

As you’ll see in my last post about how I got diagnosed, I was fortunate to be able to capture a high test result for n-methylhistamine in one test.  That one test is what allowed me to be seen as a patient by some of the more sought-after doctors in this area.

However, so far I haven’t been able to capture an abnormal result again, even though I have repeated the tests.

Fortunately, my first doctor, as well as Dr. Castells and Dr. Bayuk, still recognized that something was very clearly going on with me and took me seriously, anyway.

And lastly,

3. The patient experiences an improvement when she takes drugs that inhibit mast cells, or block the chemicals they release.

There are a few different classes of drugs that can be used to treat overactive mast cells, which I’ll discuss in more detail in a later post.   The article explains, “mast cell mediators (such as H1 and H2 antihistamines, cromolyn, leukotriene antagonists) are considered as further supporting evidence of mast cell involvement in the disease process.”

But again– just because you haven’t met all of the diagnosis criteria yet doesn’t mean that you can’t have mast cell activation syndrome.

Dr. R. was willing to give me a diagnosis based on the criteria that I did meet, combined with her clinical judgement.  I think this is one thing I did appreciate about her, even though some of her treatment recommendations did not turn out to be the best.  (More on that later).

As for Dr. Castells, my official notes at Brigham and Women’s say that I am being treated for “symptoms of mast cell activation” and am still working on capturing a second high lab reading to really confirm what my doctors and I already know.  Dr. Bayuk was able to start seeing me and treating me as well.

I think I am very lucky this way, because I have heard stories of doctors who don’t believe MCAS exists, or don’t believe that a patient could possibly have it, if he or she doesn’t fit all of the diagnostic criteria.

I am very grateful that I found doctors who don’t think this way.

Source:

Akin, C., Valent, P., & Metcalfe, D. D. (2010). Mast cell activation syndrome: Proposed diagnostic criteria. The Journal of allergy and clinical immunology, 126(6), 1099–104.e4. https://doi.org/10.1016/j.jaci.2010.08.035