Understanding Mast Cell Disorders

This post was updated for accuracy on 6/22/2020.

I haven’t done a post highlighting mast cell activation disorders (MCAD) yet, because I wasn’t entirely convinced I had it and frankly because every time I began to research it, I would get my hands on some highly technical piece on a brain-foggy day and gave up on even trying to understand it. I reasoned that with fasciablasting and my protocol, I was doing so much better that maybe I didn’t need to explore Mastocytosis or mast cell activation syndrome (MCAS) as a possible culprit.

Mast Cell Activation Syndrome is one of the newest discoveries of modern medicine and massively underdiagnosed. It's primary feature? Weird allergies that only get worse as we age!
Understanding Mast Cell Disorders Pin

The Symptoms of MCAS

I tried living out in the world (okay, in my own car) driving for Uber last fall and though I only drove a few hours a week, I ended up rapidly destroying my health and spending several months trying to recuperate. This seemed entirely like a mystery to me at first. I began to wonder if maybe the doctor who refused to remove my ME/CFS dx might have been right to do so.

Then spring happened and a few minutes in a car with a tiny bleach spill nearly put me in anaphylactic shock. After that, I began reacting to everything, the dry shampoo I’ve been using for two years, my hair dye and deodorant. Suddenly, foods I’ve eaten my whole life without incident started setting my esophagus ablaze and causing nausea, bloating and diarrhea, such as green beans, bananas, vinegar, yeast, and pepper, all in spite of taking benadryl and zantac 30 minutes prior to each meal. I realized then it was time to admit that if I hope to have any sort of a life at all, I better figure this whole thing out.

It’s not the first time it’s happened, but it’s the first time it’s been this severe, a flashing neon sign in big bold letters: M.C.A.S. On came the head pain. It’s a nebulous sort of all over head pain that sometimes starts toward the front like a sinus headache, but often just blankets the whole skull and seems particularly acute at the joints. Then there’s the inevitable sinus issues, the sore throat, the coated vocal cords, the endless pressure that often brings on tinnitus. There are migraines and ocular migraines. The eyes that are somehow simultaneously goopy and dry and feel coated in sand and don’t quite focus right. Then there’s the itching that seems to arise out of nothing at all until you’re desperate to escape your own skin. There’s the joint and bone pain, the rise in dizziness, tachycardia, overwhelming fatigue, the shortness of breath, the asthma sans wheezing and the constant subluxation of joints. There’s gaining 8 lbs in one day due to inflammation.

Then there are the visible symptoms and I’m not talking about runny noses, red eyes and that deep sexy tone your voice has acquired. There are hives, rashes, welts, cyst like acne, boils and skin so hypersensitive you can write a message in it and it will show up raised and red for hours.

A classic example of dermatographism
Dertmatographia (skin reaction caused by touch)
Cyst like acne break out from soy protein
Welts from reaction to R&F eye cream
how I react to adhesives
My reation to adhesive after a 48 hour holter monitor
Hives or “heat rash” caused by sunshine/heat intolerance
My eyes after an afternoon at the pool

As if the physical symptoms aren’t enough to bear, there is the onslaught of depression, anxiety, insomnia and brain fog that accompanies them. Your personality and outlook on life are transformed overnight. You begin to hate everything about the world, your world, but there’s no way out.

These are just some of the symptoms I’ve experienced during a flare. Here’s a full list of reported symptoms:

Information provided by Mastocytosis Society of Canada

Based on my own experiences, I feel like there are a few things missing, but of course I have to first supply the caveat that I have the zebra trifecta (EDS, POTS &MCAS), so I may experience MCAS in a slightly different way. That being said, rather than just unexplained weight loss, my experience has been more along the lines of fluctuations in weight. I put on a lot of weight from inflammation, probably because of the uptick in both cytokines and histamine, which are both big drivers of inflammation.

If you have too many cytokines, this makes it nearly impossible to lose weight, so even though I have a great deal of difficulty eating enough calories because of poor emptying and a severely limited diet, I won’t lose any weight except for those brief and blessed moments that everything calms down. While the reduction of cytokines during weight loss has been well documented, the problem of high cytokine levels preventing weight loss rarely gets explored and since most of us with chronic illnesses that cause increased cytokines are on a plethora of drugs that can also contribute to weight gain, I’d imagine it would be a tough thing to study.

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It’s incredible to think that allergies can do this to a person, but once you understand the mechanisms which drive MCAD, it really makes a lot of sense. It’s not that you’ve suddenly become allergic to the world, it’s that the cells that mediate histamines in the body have actually gone haywire. Those cells are called mast cells.

What Are Mast Cells?

Mast cells can be found in every part of the body. They are white blood cells involved in immune function which are filled with chemical mediators such as histamine, cytokines, heparin, prostaglandins, tumor necrosis factor and more. The process of degranulation causes the release of these mediators. In healthy people, this is done properly.

In the case of mastocytosis, an overabundance of mast cells are present. In MCAS, patients have a normal amount of mast cells. In both situations, the mast cells become unstable and can release an excess of these mediators when triggered, causing the types of symptoms I’ve described above. For some, they can cause deadly anaphylactic reactions, and that’s only one reason it’s so important to get a diagnosis and treatment plan as soon as possible.

Triggers can be wide ranging and various. It can be difficult to pinpoint the cause, as it’s not at all unusual for MCAD patients to develop new triggers frequently and even sometimes stop reacting to things that triggered them before. It’s paramount to pay close attention to your symptoms and many people with a mast cell disorder keep journals of what they ate and were exposed to in order to keep track and reveal patterns in order to optimize their prevention.

Things to consider include foods, medicines and supplements, cleaning supplies and laundry detergents, body and skin care products, makeup, perfumes, dyes, outdoor allergens, molds, pet dander, essential oils, and botanicals. You might even be surprised to find you react to simple wood smoke and barbeques.

If you’re already in a flare, it’s likely you’ll react to a lot of things you might not normally, and this is where things like wearing a respirator mask and utilizing the low histamine diet helps, so you aren’t adding fuel to the fire.

There are a number of meds and supplements that can be taken to help with the symptoms of MCAD, and even a few mast cell stabilizers, some of which don’t require a prescription, such as quercetin.

As I go through figuring out what works for me, I’ll definitely be blogging more on the subject, along with providing further resources. For now, I will say it’s pretty much essential to take H1 & H2 antihistamines, which I’ve been on since age 20 and to always keep benadryl on hand. Liquid is best for emergencies, as it acts fastest. If you’re going to eat something you’re pretty sure you shouldn’t, take your H1,H2 and benadryl beforehand. Most of us benefit most from mast cell stabilizers, but there are a wide variety of issues in MCAS, and an allergist well versed in the condition will know what’s best. UPDATE: Here are just a few of the posts I’ve written on MCAS since this one:

Mast cell activation syndrome can accompany many conditions, from ME/CFS and EDS to Lupus and Cancer.  Find out the symptoms of this massively undiagnosed condition and how to get treated.
Understanding Mast Cell Disorders Pin

Understanding Long Term Effects

Finally, it’s important to know about some of the long term ramifications of the disorder. First, producing excess histamine is tough on the liver, so it’s important to take special care of this organ and try to avoid drugs like acetaminophen that are also hard on the liver. There’s also a greater risk of cancer, so it’s a good idea to know your genetic cancer risks and get recommended cancer screenings done regularly.

Excess histamine gets released in our urine and can cause bladder irritation known as interstitial cystitis (IC). IC feels much like having a bladder infection, but you don’t actually have one. The burning is constant and the need to go frequent. It can also be accompanied by pelvic pain. There is no cure for IC. The vest solution is managing your MCAD, but there are meds that can be prescribed to help.

I hope I’ve helped shed a little light on this complex disorder and made it easier to understand for patients and those who care for us. May you be blessed with patience as you work to unravel this complex issue; with yourself, the unpredictability of the illness and its endless frustrations. It takes an incredible amount of strength to endure, but with a little persistence and a lot of pharmaceutical help, there is hope!

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