I do have mast cell activation syndrome.

Hi everyone!

First of all, I’m sorry for some of the posts that have seemed to go back on forth on whether or not I actually have Mast Cell Activation Syndrome (or MCAS, for short).   First of all, I don’t want to have it.  Secondly, it’s been kind of hard to get a straight answer out of the first specialist I’ve seen about it.

However, since then, I’ve seen a few more specialists (including one world-famous one– I somehow got in after being on her waiting list for only a month, even though technically she’s booking a year out for new patients!).

So… what it comes down to is that, yes, I do have mast cell activation syndrome.

What is it?

Essentially, mast cells are a critical part of our immune system.  In the case of a “normal” allergy, when something we’re allergic to triggers the mast cells, they are what release all of the chemicals responsible for the subsequent allergic reaction.

This can be relatively mild, in the case of, say, a pollen allergy.  Or it can be life-threatening, in the case of a food allergy.

Mast cell activation syndrome, however, is much more complicated, because the mast cells are overactive.  So, they release their contents way too often, in response to seemingly-random triggers, including foods, medications, alcohol, and even exercise,and stress.

This diagnosis is really terrifying, at least at first, because basically, you learn that you’re at risk for anaphylaxis (a potentially life-threatening allergic reaction) and you might not even know what the cause was.

It’s different from a “regular” allergy because your mast cells can freak out even if it’s something you aren’t technically allergic to.

For example, I now get hives on my skin after eating certain foods… even if it’s foods that I’ve been tested and shown not being allergic to.

It sounds crazy, right?  I know.  That’s what I thought, too.  And that’s still how I feel, most of the time, when these symptoms are happening to me.

At first, after learning about this, I was in a very dark place.  I joined a bunch of Facebook groups with other patients to learn more about the disease, and although I learned a ton, I was also very, very scared by what I read.

Since meeting with two specialists who are way more familiar with mast cell than anyone I’ve seen previously, however, I’ve been feeling a bit better.  I’ve learned that there are people who find a way to make the condition manageable… or even to make it go into remission.

The other thing I really, really struggled with at first is “Why me?”.  Why, after everything else I’ve been through, would I develop another weird and debilitating health condition?

But, the more I learn about it, the more I think it actually makes sense.  People tend to develop MCAS after a very stressful or traumatic period in their lives.  Often, it can be what is known as “secondary MCAS”– triggered by another health condition that causes the body to freak out.

And the good news is that, according to Dr. Castells (one of the specialists I’ve seen), often when you can treat that initial trigger, you can actually make the MCAS go away.

I do not know what my initial trigger was, exactly, but I have a very strange feeling that my MCAS actually first started a few years ago, albeit on a much more minor scale.

It started when I was around 30, and still dealing with SI joint dysfunction.  My entire life was on hold, and I could barely walk.

Most of the time, I managed to keep my head up and not be too stressed out about the impact SIJD was having on my life.  But for some reason, around the age of 30, a bunch of things all went wrong at the same time.  Some of the people who’d been the most important to me– not just my family but also a few close friends– also seemed to lose patience with me, and the fact that I wasn’t getting any better.

I don’t want to go too much into detail about this at right now (maybe in a subsequent post) but something about losing the support of several people who I’d really cared about had a devastating effect on me.

Actually, it was traumatizing– I know that’s a strong word, but I think many of you with a chronic illness or disability will be able to relate.

Because I wasn’t a healthy, fit person who could take care of herself.  I was someone who could barely walk, and at the time, still didn’t understand what was happening to her.  It was very, very scary to try to move through life not knowing when my hips were going to do this mysterious locking thing, and I wouldn’t be able to move normally.  It was also really difficult, emotionally, to have this problem no one else seemed to understand (I hadn’t found any of my good PT’s and doctors yet) and so to lose the support of people who had been there for me was devastating.

And that is when my allergies started.  Or, at least, what I thought were allergies.

I’ve written about them before.  I even had started another blog about them, which I hadn’t had time to really get into yet.

But now that I’ve learned more, and look back, I don’t think what I had was just allergies.  I think that was actually the beginning of my mast cell activation syndrome.  Because, although I only tested positive for allergies to dust and mold, I was freakishly sensitive to everything.  

Every place I lived, something was wrong and I couldn’t breathe.  I even lived with roommates who were also allergic to dust and mold, yet I was the one who was always suffering.

I tested negative for being allergic to cats, yet often times, I’d try to pat someone’s cat and find my nose was itching and my eyes were watering.

Now it actually does all make sense.  Yes, I am allergic to dust and mold, but there is also another layer entirely going on, making everything more intense.

So… for now, I am doing my best to remain optimistic.

A big turning point for me, even before I met Dr. Castells, was when I read her interviews with Yasmina, the Low-Histamine Chef.   That was when I learned how much diet, exercise, and lifestyle could affect mast cell disease, and possibly even make it go into remission.   (Click here for the interviews: Part 1 and Part 2).

I’ve also been to an in-person support group (the Massachusetts chapter of The Mastocytosis Society— mastocytosis is another disease that’s very similar to MCAS).  At that meeting, I met people with MCAS and mastocytosis who had managed to make it go into remission.  It was really great to get support and to see that people had eventually found a way to make these diagnoses manageable.

One of the reasons mast cell disease is so difficult to get diagnosed, much less treat, right now is because so few doctors are familiar with it.  Mastocytosis has been known for a few decades, so more doctors are likely to have heard of it.

However, mast cell activation syndrome has only been much more recently recognized– in fact, a small working group of doctors only first came up with a name for it in 2007.  Here we are in 2018 and still, many in the medical field haven’t even heard of it.   Apparently, it’s even still controversial among some allergists (like so many of the medical conditions we now understand today).

So… I am still going.

It took me a while, to get up the resolve to pick my head up and even try to move forward.  But hearing the stories of others, as well as better understanding the roots of my own condition, have helped me to make a lot more sense of it.

I’m reminding myself that I’ve been through other health scenarios that once looked totally hopeless, and somehow, I found a way out of them.  So I’m going to do my best to make that be the case here.

I’ve converted my “allergy” blog into a blog about mast cell activation.  It’s actually still in “rough draft” form, where I’m taking notes just for me.  This is actually how My Sacroiliac Joint Saga began, at one point in time.

But starting my SI joint blog, even when it was just for me, taking notes, ended up being the very key to finding my path toward healing, as it put me in the mindset to keep learning and taking in information.

So I’m going to put all the lessons I’ve learned from managing past health conditions to work here, too, and we’ll see how far I get.

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