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What I Want Others to Know About Mast Cell Activation Disorder

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I absolutely love it when things work the way they were supposed to. I know what to expect. There are no surprises (I do not like surprises one bit!). I am prepared. Everyone gets what they are expecting to get. Life is lovely and the birds are chirping. However, when things don’t work like they are supposed to, there is confusion. There is disappointment, not to mention a fair amount of grumpiness.

This is the case with the immune system in our bodies. We can learn in school, we can read in text books and we can read on the internet what it is made up of and what is designed to do. Sometimes, though, it goes rogue. No one is sure why. I have read some that think it is because of faulty genetics passed down from parents or grandparents (i.e. if a parent had allergies, children are much more likely to have allergies). Some think our immune systems deciding to not play by the rules could be spurred on by a bacterial infection or a virus. Some researchers believe it is because of exposure to a toxin like mold or chemicals. Maybe they all are right.

What I do know is living in a body with a dysregulated immune system is like living inside a video game you can’t escape. Let’s talk about mast cells. They are the white blood cell master regulators of the immune system. The mafia bosses, if you will. They say “jump” and everyone says “how high?” Let’s talk about what happens in something called mast cell activation disorder.


In mast cell activation disorder (a.k.a. MCAD), these immune cells started off as good guys, as honorable, hardworking military sergeants, let’s say. They are thought to be in literally every part of the body, calling other parts of the immune system into action when the need arises by releasing chemicals called “mediators.” These chemicals signal the other parts of the immune system to get off their backsides and get to work. They help the body defend against diseases and they help with wound healing. They love to be anywhere you have mucous like the lungs, mouth, digestive tract, nose, etc. They are in blood vessels, nerves and skin tissue. And they are filled with specific chemicals designed to call specific immune system helpers. That sounds great, right? Fight disease. Aid in wound healing. But…

What if these disciplined, purposeful sergeants of the immune system went cuckoo? What if, instead of being able to actually recognize the enemy, they saw an enemy in benign things? What if everything they looked at looked like an enemy? In response to this delusion of the mast cell brain, this once helpful and reliable cell begins shooting its chemicals when it really shouldn’t. And when mast cells are mad, they are mad. They might start shooting at certain, random things, like when you eat chicken or oatmeal. They could draw their guns at bath water that is too warm or scented, clean laundry. It makes no sense as to why these things are bothersome to your body, but now, all of a sudden, they are.

Sometimes, mafia mast cells stick to an organ or two in the body, being ticked, shooting their guns and calling in troops to help fight something that was never there to cause harm in the first place. But sometimes mast cells go completely nutso. They are out-of-their-minds furious, and they send a memo to the mast cells all over the body to share in their fury. Now you have irrational white blood cells over-reacting all over the body!

The ones in the skin are ticked and they cause hives, a “fun” little trick called dermatographic urticaria (being able to write on the skin and have it rise up in welts), as well as swelling, flushing, random itching and burning sensations. The ones in the GI tract are grumpy and now, it won’t let any food be eaten without a reaction of nausea, vomiting, reflux, stomach pain and runny stools. And to add insult to injury, the mast cells in the stomach are mad if you don’t eat, either. You are darned if you do and darned if you don’t. The ones in the brain are mad, causing headaches and brain fog, anxiety, depression and fatigue. That’s not all! Mast cells can cause a drop in blood pressure, high blood pressure, fatigue, achiness, heart palpitations, wheezing and shortness of breath. And when it gets too bad, it can turn into anaphylaxis.

Triggers for causing mast cells to freak out (the technical term is degranulation) can be vast and random. They include medications, foods, supplements, hormones, stressors (physical and emotional), cold, heat, pressure, odors, chemicals, insect bites, pollen, pets and exercise. If the correct medications aren’t in place or if the mast cells are not responding to the meds, anaphylaxis is not uncommon.

There are other illnesses and disorders that may be found with MCAD. Those include:

– Allergies
– Asthma
– Autism spectrum disorder
– Autoimmune disorders
– Celiac disease
– Eosinophilic disorders
– Fibromyalgia
– Food allergies and intolerances
– Reflux
– Endometriosis
– Interstitial cystitis
– Irritable bowel syndrome (IBS)
– Inflammatory bowel disease (IBD)
– Migraine
– Mood disorders
– Multiple chemical sensitivity
– POTS (postural orthostatic tachycardia syndrome)
– EDS (Ehlers-Danlos syndrome)

What if there was virtually nothing you could eat without having to run to the bathroom? What if during puberty or your menstrual cycle, you could not even leave your house because the pollen, exhaust fumes and other people’s perfume cause your throat and your eyes to swell? Imagine having an anaphylactic reaction to dryer sheets or walking to the car on a winter’s day! Crazy, isn’t it?! The situations that can cause reactions for people with mast cell activation disorder are endless.

One can see how anxiety and depression are common with this immune dysregulation. There jillions of triggers for symptoms, a handful of medicines that might work and even fewer doctors who know anything about mast cell activation disorder. It truly is a rare disorder. With MCAD, Epi pens are my security blanket and leaving my house is my nemesis. Weather is an adversary, as well as seasons and sunshine. I have to eat to live, and yet eating many times makes me wish I were dead. There is no predicting what my body will do, but what I can count on is the fact that it will be unpredictable. It can strain relationships and cause isolation. Fear and anxiety are constant battles because of the radical way my body reacts, but the funny/not funny part of this is, it is best to avoid stress so as to not bring on a reaction. And chances are great that people will have one or more (usually many more) of the other disorders associated with this immune disorder.

But this is how life feels when mast cells are behaving badly – always walking on eggshells, hoping to avoid catastrophe. I guess the cool thing about it is, now you know what it feels like to have a video game being played in your body. Unfortunately, rarely are you the winner.

This post originally appeared on Better Together.

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Originally published: June 16, 2017
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