What Is MCAS? Mast Cell Activation Syndrome Basics
Do you feel sick, but your bloodwork comes back “normal?”
Do you have “strange” symptoms that your provider doesn’t have an explanation for?
How many of these other questions do you answer yes to:
- Do you have many different kinds of symptoms?
- Do you only tolerate a limited number of foods?
- Do you suffer from insomnia?
- Do you have chronic pain?
- Do you have chronic gut issues?
Do you have sensitivities to smells that don’t bother anyone else?
Do you notice small improvements in your health if you address some of your symptoms? But then do you quickly revert to feeling terrible again?
When I was really sick, I answered yes to all those questions.
I went to doctor after doctor. I explained all the symptoms I had.
I let them know the severity of the pain I felt in my bones and muscles. I told them even my skin and hair hurt.
I told them I never got restful sleep. There was a period when I only slept about 2 hours a night.
I got to where I could only tolerate 10 foods, including herbs.
If I ate something outside of those 10 foods, I would have terrible itching, anxiety, and even worse sleep. And my joints would start to ache even more than normal.
Walking by the detergent aisle at the grocery store made me feel sick. I would have to hold my breath to walk through.
I’d get a headache, nausea, and brain fog anytime I’d drive through an area where they were paving the road, or anytime I got stuck behind a diesel vehicle.
These things didn’t affect anyone around me at all.
I told the doctors all of this.
Sometimes they wanted to help. But they didn’t know what to do because my bloodwork was normal.
Sometimes I was told that I couldn’t possibly be telling the truth about my symptoms.
Sometimes I was told it was all in my head.
Has this happened to you, too? If so, I’m sorry you had to experience that. I know how terrible it feels to hear that.
But I knew something was wrong with me. Most days, I couldn’t get out of bed. When I could get up, I had to use a cane.
I was only in my twenties.
I knew it wasn’t in my head. And I knew I wanted to get better. So, I kept looking for answers.
I eventually found out all my symptoms were related. And there was even a name for it. I had MCAS (Mast Cell Activation Syndrome.)
Population studies show Mast Cell Activation Syndrome affects between 9% to 17% of the general population.
That’s almost 1 in 10 at the low end!
Many of my colleagues and I think Mast Cell Activation Syndrome affects a large majority of people with chronic illness as well.
Hopefully there will be some population studies in this area soon.
Right now, Mast Cell Activation Syndrome is one of the most underrecognized and under addressed chronic conditions out there!
So, if you are feeling lost, it’s no wonder at all. But I want you to know you aren’t alone.
Now, if this is all new to you, you may be asking yourself, “What is MCAS?”
Keep reading to learn:
- How exactly mast cells get dysregulated
- Why is MCAS on the rise?
- Why are there so many different ways MCAS symptoms can show up?
- Testing options and challenges with testing
- What the most important steps are for recovering from MCAS
- Get the Mast Cell Activation Syndrome Symptoms Quiz
Let’s dive in!
What Is MCAS (Mast Cell Activation Syndrome)?
Mast Cell Activation Syndrome is a condition where important immune cells called mast cells have gotten out of control.
When you have Mast Cell Activation Syndrome, your mast cells get overly sensitive. They become overly responsive.
With overly responsive mast cells, you may be immediately sensitive to things that don’t seem to affect others.
You may also respond to things that should be safe (like food)!
So, what causes you to get these over-responsive or “haywire” mast cells?
Some rare forms of Mast Cell Activation Syndrome are genetic (which you’ll see called clonal MCAS).
But the vast majority of Mast Cell Activation Syndrome is what is called non-clonal. This means it’s not related to the mast cell genes.
However, any genetic factors that contribute to increased inflammation could play a part in affecting non-clonal MCAS.
Contributors to Mast Cell Activation Syndrome can include:
- toxic mold exposures
- exposure to toxic chemicals and heavy metals
- food triggers like histamine, lectins, and oxalates
- nutritional deficiencies
- infections (like Lyme and Epstein Barre)
- hormone imbalances
- chronic stress and traumas
- nervous system dysregulation
I call these root causes.
These are the big picture things that can lead to overly responsive or “haywire” mast cells.
When the mast cells go haywire, you can end up with all kinds of symptoms and conditions.
You’ll read more about MCAS symptoms in just a minute.
First, let’s continue by looking at what mast cells are and the role they play in your body…And how they go haywire.
What Are Mast Cells?
Mast cells are a type of white blood cell. They are an important part of the immune system.
You have mast cells in almost every tissue in your body. Mast cells are in your:
- eyes and ears
- entire GI tract (mouth, esophagus, stomach, intestines)
- lung lining
- lining of the bladder
- blood vessels
- muscles, tendons, ligaments
- the brain
I like to think of mast cells as your defenders of the castle (your body). They stand guard to protect you against threats.
They help with wound healing, immunity, and blood–brain barrier function.
It’s important to remember that your mast cells aren’t the bad guys.
They have dozens of important roles in your body. And they’re necessary for survival.
For example, when you get an infected cut, your mast cells are working hard to create some inflammation to keep bacteria from getting into your blood stream.
And when you get sick with a virus, your mast cells are some of the first immune cells on the scene to launch an attack for protection.
However, problems can occur when either:
- there are too many mast cells or
- your mast cells are out of control (what I call haywire)
Systemic mastocytosis is one kind of mast cell disorder.
Mastocytosis is fairly rare. It’s a genetic condition where someone’s body makes too many mast cells.
It’s much more common to have normal mast cell levels, but your mast cells are haywire. This is the much more common type of Mast Cell Activation Syndrome (MCAS).
Now you might be thinking, I just read that mast cells and mast cell responses are normal and even beneficial!
If they work extra hard, isn’t that a good thing? Unfortunately, it isn’t. Let’s look at why next.
Haywire Mast Cells
You now know that mast cells are part of your immune response. They are those defenders that sense what’s going on.
They do this through something called mast cell receptors. These receptors are a key part of cell signaling — cells responding to the molecules around them.
Your mast cells are responding to:
- every molecule of air you breathe
- everything you swallow
- everything that touches your skin
- everything that circulates in your blood stream
- all your hormones
- your neurotransmitters (and your stress)
- and much more!
Your mast cells have over 200 different types of receptors. This is how they can respond to everything that’s happening outside and inside you.
Things inside and outside your body trigger these receptors all the time.
As a response, mast cells release chemicals called mast cell mediators.
You may already be familiar with one of these mast cell mediators: Histamine.
Did you know there are over 1000 mast cell mediators?
Mast cells have little granules that store these mediators. When they are released, it’s called degranulation. This just means they’re released out of the little granule pockets in the mast cells.
Here are just a few of the other types of mediators released in degranulation and what they do:
- cytokines – assist in inflammation increase, inflammation reduction, cell signaling
- leukotrienes – play a role in blood vessel dilation or constriction
- prostaglandins – has a role in blood vessel dilation or constriction
- tryptase – play a role in allergic responses
- neurotransmitters and neuropeptides – has a role in nervous system signaling
- platelet-activating factor – play a role in immune defense, inflammation, anaphylaxis
All of these can work to keep you healthy.
But those root causes we talked about earlier can interfere with normal mast cell activity in your body.
How is this happening?
Mast cells normally launch a response and then stabilize again.
But nowadays, you’re bombarded with more chemicals than ever.
And don’t underestimate the impact – just in 2012 between 8.4 and 13 million people died prematurely from pollutants.
Additionally, you’re hit with the growing epidemic of toxic mold in homes and other buildings as well as the sheer amount of stress you experience day to day.
And when your mast cells are being constantly bombarded, they don’t get time to stabilize and recover. It’s as if the guards of your castle never got time off.
If you didn’t rest or sleep for weeks and months on end, you’d start to get out of sorts, too!
When this happens, we refer to this as dysregulated or “haywire” mast cells.
Over time, constant triggers can cause your mast cell receptors to become overly sensitive and hypervigilant. And because of this, your mast cell mediators can be released at the wrong times or at very high levels.
Then, your mast cells can continue to pump out these chemical mediators even when they shouldn’t. And this can cause a lot of inflammation and other symptoms in your body.
No wonder Mast Cell Activation Syndrome is so common now!
Here’s an example of how this happens using one of the mast cell mediators, histamine.
Histamine can cause inflammation. Initially, this inflammation can help in healing.
But what if your mast cell histamine receptors are overly sensitive?
This can trigger the surrounding mast cells to release more inflammatory mediators like histamine. And then that can trigger more mast cells until it snowballs out of control.
This is how your mast cells can continue to release histamine and other inflammatory mediators even after the initial threat is gone.
It’s like a forest fire that starts with a little spark and slowly burns out of control. You can see what a terrible cycle this is!
And that’s where MCAS symptoms show up.
Remember how you read that mast cells are in nearly all tissues in your body?
This is why chronic mast cell activation can show up in so many different ways. For example:
- skin conditions
- GI problems
- brain fog
- sleep issues
- joint and muscle pain
And that just names a few symptoms of MCAS!
Here’s another problem with these dysregulated mast cells. Mast cells start seeing everything as a threat.
Canaries and Mast Cells
For years, I couldn’t help but think I was a canary in a coal mine.
If you don’t know this saying, it comes from an old practice coal miners used. Mines could have toxic gases that were odorless. Miners could die in the mines from breathing in these fumes.
They didn’t have a way to test for these gases back then. But someone found out that canaries are more sensitive to those fumes. So, they’d take canaries into the mines with them.
If toxic gases were present, the canary would pass out or die. (Sad, I know.) The gases would affect the canary before the gases would be fatal to the miners. So, the miners knew to get out right away if the canary didn’t make it.
Do you feel like you are a canary in the coal mine, too?
Do you have multiple food sensitivities? Or maybe can only eat a handful of foods without having flares?
Do you have trouble taking supplements or medications?
What about trouble with chemicals?
If you have Mast Cell Activation Syndrome you may notice those kinds of reactions. You may also notice reactions from exposure to:
- gasoline fumes
- paint fumes
- perfumes and fragrances
- off gassing from new carpet or furniture
- chemicals in cleaning products
- preservatives in junk foods
- air pollution
- And more…
Once the mast cells are overly responsive, you become hyper-sensitive to those toxic triggers that might not be affecting those around you.
And you may start noticing responses to non-toxic triggers, like foods, too.
Your mast cells just don’t know when to shut off or what they should be attacking.
Everyone is different, but here are some things you can become sensitive to when you have Mast Cell Activation Syndrome:
- certain foods
- chemical smells
- infections (viruses, bacteria, mold colonization, parasites)
- hormone imbalances
- temperature extremes (hot or cold)
- lack of sleep
- deep tissue massage
- heavy metal toxicity
- high stress
- certain medications
- mast cell triggering supplements
You’ve been reading about overly sensitive mast cell receptors and over-releasing of mediators. But, how does this show up as symptoms?
Take a look at the symptoms and conditions that can be associated with Mast Cell Activation Syndrome next.
What Are Mast Cell Activation Syndrome Symptoms?
First, we have to remember that mast cells are nearly everywhere in the body. That means Mast Cell Activation Syndrome symptoms can occur in different systems in the body.
In Mast Cell Activation Syndrome, inflammation affects at least 2 systems of the body.
For example, you could have chronic gut issues like diarrhea or constipation (digestive system) along with muscle and bone pain (musculoskeletal system).
But I’ve found some people may have such serious symptoms in just 1 system that they don’t think about their other symptoms.
For example, you have serious levels of dizziness. But you may think your digestive issues are just due to “something you ate.” But these may be linked.
In fact, nothing in the body is really separate.
There are a huge number of possible symptoms and conditions that can be associated with Mast Cell Activation Syndrome (MCAS).
Why so many?
If you think about it, you have:
- mast cells in almost every location in your body
- over 200 types of mast cell receptors
- over 1000 mediators
Sometimes, all the mast cells in the body can be affected. But more commonly only a few mast cell locations (at least 2 or more) are affected.
On top of this, some of your 200 receptors may be hypersensitive. And some (but not necessarily all) of the 1000 mediators may be over released.
So, the symptoms someone will have depends on the location of mast cells, the receptors, and the mediators involved.
Some people have skin symptoms. Others don’t. Some have severe allergic reactions. Others don’t.
The possible combinations are nearly impossible to calculate!
This is what has made Mast Cell Activation Syndrome so mystifying for a long time. And it’s why people can have completely different presentations of symptoms.
The main key is symptoms in 2 or more areas.
Here is a list of the majority of possible symptoms the research tells us people with Mast Cell Activation Syndrome can experience.
How many do you have?
Symptoms and Conditions Associated with Mast Cell Activation Syndrome
- overall fatigue and feeling bad
- food, drug, environmental, and chemical sensitivities
- sense of being cold all the time
- swollen lymph nodes
- osteoporosis and osteopenia (even in young people)
- arthritis that moves around
- general muscular and bone pain
- hyperflexible joints
- degenerative disk issues
- easy bruising
- reddish or a pale complexion
- burning sensations
- dermatographia (persistent redness or white marks after scratching skin)
- angioedema (swelling under the skin)
- urticaria (red, itchy welts on the skin)
- slow healing of skin
- hair loss
- feeling faint or fainting
- chest pains
- fast heartbeat
- heart palpitations
- dizziness and lightheadedness when standing up
- low blood pressure
- mouth burning
- gum inflammation
- abdominal pain
- trouble swallowing
- throat tightness
- elevation of liver enzymes
- high cholesterol
- food sensitivities and food allergies
- irritable bowel syndrome
- obesity may occur due to fat metabolism and absorption issues
- other issues with the GI (gastrointestinal) tract like SIBO, SIFO, or leaky gut
Brain and Nervous System
- brain fog
- short term memory issues
- trouble recalling words
- loss of pleasure in life
- nerve pains
- trouble with attention
- temperature changes
- tingling and numbness in arms and legs
- other neurological symptoms like seizures
Lungs and Respiratory
- shortness of breath
- increased mucous production
- postnasal drip
- sinus congestion
- frequent throat clearing
- sinus and/or nasal swelling
- nasal polyps
- eye pain
- trouble focusing
- inflammation in the eyes
- blurry vision
- itchy, watery, or irritated eyes
- painful periods including cramping
- male and female infertility
- hormonal imbalances
Urinary Tract Symptoms
- inflammation of tissues
- pain with urination
- urinary tract infection type symptoms
Anaphylactoid or Anaphylaxis Reactions
(These can be life threatening and may require immediate action like an EpiPen, for example.)
- allergic reactions
- difficulty breathing
- itchy skin
- flushing or pale skin
- feeling of warmth
- weak and rapid pulse
- dizziness and fainting
Other conditions that may be related to MCAS
- chronic fatigue
- interstitial cystitis
- certain cancers
- Crohn’s disease
- type 2 diabetes
- Ehlers-Danlos Syndrome (EDS)
- Postural Orthostatic Tachycardia Syndrome (POTS)
- autism spectrum disorders (due to the mast cell/brain connection)
- autoimmune diseases
- rheumatoid arthritis
- Hashimoto’s thyroiditis
- Guillain- Barré syndrome
- multiple sclerosis
That’s quite a list! So, how do you know if you have Mast Cell Activation Syndrome? Let’s look at that next.
Should I Test for Mast Cell Activation Syndrome?
How many of those symptoms sounded familiar? And how do you know they are related to Mast Cell Activation Syndrome (MCAS)?
First, I always encourage you to go to your doctor with any new or worsening symptoms. You want to rule out serious conditions that may need immediate medical attention.
But if your doctor doesn’t see anything wrong, you may want to consider Mast Cell Activation Syndrome.
Like I told you earlier, doctors often said nothing was wrong with me.
Some doctors or healthcare providers may test for Mast Cell Activation Syndrome. Here are some of the most common tests:
- N-methylhistamine 24 hour urine test
- Blood histamine
- Blood tryptase
- Blood heparin
- Blood chromogranin A
- Blood prostaglandin D2
- Blood leukotrienes
But here’s what you should know.
Unfortunately, getting a diagnosis of MCAS can still be quite problematic. These types of markers can be up and down in the blood stream or urine very quickly.
And these samples must be kept chilled from the time of collection through the processing. Many labs are unable to keep samples cold for this long.
And there is still a lot of debate about testing.
Some researchers say that tryptase should always be elevated in MCAS. Some say that tryptase is almost never elevated.
With time and more research, testing options should improve. But for now, testing markers only seem to capture about 10% of cases.
In a nutshell: there are still a lot of missed cases with the testing.
But, if the following is true for you, considering Mast Cell Activation Syndrome may be very helpful:
- have had other conditions ruled out
- have inflammatory symptoms in 2 or more systems
- improve with removing triggers and supporting mast cells
Wondering if you have MCAS?
So, what can you do about Mast Cell Activation Syndrome? Let’s end with you knowing there is hope!
What Can I Do About Mast Cell Activation Syndrome?
Addressing Mast Cell Activation Syndrome isn’t a quick and easy fix. It takes time and work.
For some people it may take a year or more. But this dedication can pay off.
I’ve worked with hundreds of people who’ve gotten their health and their lives back!
This happened for me, too. I was once bedridden and could barely walk at all. I had severe insomnia and brain fog. I couldn’t even read a book!
I had sound sensitivity so badly that I couldn’t listen to classical music or watch a movie.
Today I can go for a hike for over an hour! I was able to go back to graduate school and build a busy practice. I even listen to music on the radio with no problems.
There are 3 major pieces to addressing mast cell activation syndrome:
- Calm your nervous system
- Calm your mast cells
- Identify and address your root causes
It’s important you know that this blog post is for informational and educational purposes. It’s not meant to treat any health condition or to be prescriptive for anyone. If you have any medical condition, it is critical you work under the care and guidance of a licensed medical provider.
Calm your nervous system
Why calm your nervous system? There are mast cells at every nerve ending. If you have mold toxicity, Lyme, or chronic stress your nervous system is likely haywire.
This tells your mast cells you’re in danger.
Related Article: Non Toxic Tick Prevention for those with Sensitivities
So, you have to calm the danger signals from the nervous system to the mast cells.
I’ve found that calming the nervous system is at least 50% of the healing process.
In my Mast Cell Nervous System Reboot course, I’ll help you outline your roadmap to calm your body down.
Calm your mast cells
Medications and/or supplements can help calm your mast cells.
If you go to your doctor for Mast Cell Activation Syndrome or Histamine Intolerance, your MD may suggest the following as antihistamines and mast cell stabilizers.
- Cetirizine (brand names are Benadryl, Claritin, Allegra, Zyrtec)
- cimetidine (brand names are Pepcid or Tagamet)
- Leukotriene blockers:
- montelukast (brand name is Singulair)
- omalizumab (brand name is Xolair)
These medications can be very helpful. For some people they’re necessary to get the mast cells under control again.
But what if this is the only thing someone does without addressing root causes?
If the root causes aren’t addressed, then Mast Cell Activation Syndrome can become degenerative.
This is because the mast cells are overactive for a reason. They’re working triple time to protect you from threats to your body!
There are also supplements you can take to help calm your mast cells. A few of my favorite starting points are:
- Baking soda (if blood pressure is low)
- DAO (diamine oxidase)
- Quercetin or isoquercetrin
- Baicalin (get 10% off with the coupon code mastcell10)
Most people with Mast Cell Activation Syndrome will need a synergy of nervous system supports and mast cell supports to calm things down.
And they need to do it in the right order. I’ll show you exactly how in my course:
Address root causes
If you want to fully recover, you need to figure out what your root causes are and address them.
The #1 most common root cause I see in my practice is Mold Toxicity. This is the order that the most common root causes are usually addressed in:
- Food triggers
- Mold Toxicity
- Lyme and related infections
- Heavy Metals
The good news is, there is a lot you can do to help manage your symptoms, support your body’s natural healing processes, and to feel better.
95% of the clients I’ve worked with through the Mast Cell 360 practice have seen improvements. They’ve gone on to feel much, much better.
I’m always very up front, though. I want you to know this isn’t a quick fix and there are no guarantees.
But you can decrease mast cell reactions. Many people can normalize their mast cells in time, too.
Here’s what that process may look like:
- supporting your nervous system
- addressing food choices
- drinking plenty of clean water
- cleaning up your environment (including dealing with mold, reducing toxins in beauty and skincare products, cleaning up the air you breathe)
- supporting your body with supplements (and medications when needed)
- gently detoxing
- addressing infections
If you are suspicious mold is one of your root causes, check out my MC360TM Precision Mold Master Class.
Managing Mast Cell Activation Syndrome (MCAS) means managing triggers and systemic inflammation as much as possible.
While it does take work to get better, you have the possibilities and opportunities to heal, regain your life, and live to your fullest potential.
More MCAS Resources
For more information on MCAS and tips to support your healing, read this next:
- Mast Cell Activation Syndrome 101: The Beginner’s Guide to Healing – Want to learn more about MCAS? This article is great for MCAS basics.
- What is Histamine Intolerance and How Can You Address It? – Histamine Intolerance can often be seen with MCAS, but not always! Sometimes you might have one or the other. This is a good post to get the basics on Histamine Intolerance.
- Are You Getting Zapped? Top Mast Cell Activation Syndrome Triggers in Your Home (Affects Histamine Intolerance, Too!) – Find out what’s in your home that might be making you sick. You’ll also get tips on easy ways to make changes so your mast cells aren’t getting zapped!
- Histamine Intolerance vs. Mast Cell Activation Syndrome – Despite having similar symptoms, you should know the difference between these two conditions.
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