What Is MCAS? Understanding Mast Cell Activation Syndrome Symptoms and Causes

What is MCAS? As you’ll read in this post, Mast Cell Activation Syndrome (MCAS) is an often misunderstood and underrecognized condition with a wide variety of possible symptoms.

Many people living with MCAS don’t even realize all their symptoms may be connected.

See if any of this sounds familiar….

Do you feel sick, but your bloodwork comes back “normal?”

Do you have “strange” symptoms that your healthcare practitioner doesn’t have an explanation for?

Are you “more sensitive” to things that don’t seem to bother other people?

How many of these other questions do you answer yes to? Do you:

Have many different kinds of symptoms?
React to many foods or only tolerate a limited number of foods?
Suffer from insomnia?
Experience a lot of anxiety?
Have chronic pain?
Have chronic gut issues?
Have sensitivities to smells that don’t bother anyone else?
Notice small improvements in your health if you address some of your symptoms? But then you quickly revert to feeling terrible again?

Many people in our sensitive community can answer yes to all of those questions… and more. But you don’t need all of these to have MCAS.

If you’re nodding along to these questions, you’re not alone. And many people struggle to find explanations or help.

So, keep reading to learn:

What MCAS is
How exactly mast cells get dysregulated
Why MCAS is 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

But first, if you or a loved one has been through the frustration of unexplained symptoms and looking for answers, Beth’s story is going to feel very familiar.

It’s important you know that this blog post is for educational and informational 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 healthcare provider.

Beth’s Story: Finding Answers

See if you resonate with this story:

“I went to doctor after doctor. I explained all the symptoms I had.

I let them know the severity of the pain in my bones and muscles. I told them even my skin and hair hurt.

I told them I never got restful sleep.

At the time I could only tolerate 10 foods, including herbs. Anything outside of those triggered terrible itching, anxiety, worse sleep, and worse joint pain.

Walking by the detergent aisle at the grocery store made me feel sick. Road and gas fumes gave me terrible headaches

But 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. Or that it was all in my head.

But I knew something was wrong with me.

I knew it wasn’t in my head. And I knew I wanted to get better. So, I kept looking for answers.”

Beth eventually found out all those symptoms were related. And there was even a name for it — 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! And it appears to be even more common in those with chronic illnesses. Hopefully, they will do studies 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 we want you to know you aren’t alone. And there are things you can do to heal and feel better.

Let’s dive in!

Understanding MCAS: When Your Immune System Goes Haywire

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.

Clonal MCAS is also different than genetic factors that don’t cause MCAS but may contribute to symptoms, like genes that affect inflammation.

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 that may be acute or ongoing like Lyme, Epstein Barre, Covid, or the flu
Hormone imbalances
Chronic stress and traumas
Nervous system dysregulation
Some genetic factors

We call these root causes. And most people have a combination of at least a few.

These are some of the big picture things that can lead to overly responsive or “haywire” mast cells.

And when 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 and Why Do They Matter?

Mast cells are a type of white blood cell. They are an important part of your immune system.

You have mast cells in almost every tissue in your body. Mast cells are in your:

Skin
Eyes and ears
Entire GI tract (mouth, esophagus, stomach, intestines)
Lung lining
Lining of the bladder
Blood vessels
Nerves
Muscles, tendons, ligaments
Bones
Brain

You can think of mast cells as 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 (clonal types of MCAS)
Your mast cells are out of control (what we call haywire)

Systemic Mastocytosis is one kind of mast cell disorder. It’s a genetic condition where someone’s body makes too many mast cells. And it is relatively rare.

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.

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.

How Mast Cells Become Dysregulated

You now know that mast cells are part of your immune response. They are the 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 (chemical messengers)?

Let’s take a closer look at this important part of understanding mast cells and MCAS.

Mast Cell Mediators

Mast cells have little granules inside that store these chemical messengers (mediators). When those mediators are released, it’s called degranulation.

Here are just a few of the types of mediators and what they do:

Histamine – help regulate immune response, role in blood vessel dilation, various roles in other body functions
Cytokines – inflammation increase, inflammation reduction, cell signaling
Leukotrienes – plays a role in blood vessel dilation or constriction
Prostaglandins – has a role in blood vessel dilation or constriction
Tryptase – plays a role in allergic responses
Neurotransmitters and neuropeptides – have roles in nervous system signaling
Platelet-activating factor – plays 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?

How MCAS Starts: When Mast Cells Never Get a Break

Mast cells normally launch a response and then stabilize again.

They’re supposed to be your body’s protectors, the guards of your castle.

But today, your mast cells are facing more triggers than ever:

Increasing levels of toxic chemicals in the environment
The growing epidemic of toxic mold in buildings
Unprecedented levels of chronic stress

And these constant triggers add up.

In 2012 alone, pollutants were linked to over 8.4 to 13 million premature deaths worldwide. That doesn’t even include mold exposure or stress, both of which heavily activate mast cells.

And it doesn’t include stressors like acute or chronic infections (Lyme, EBV, Covid), injury, or traumatic events that can be the “final straw.”

When mast cells are constantly on alert, they don’t get time to stabilize or recover.

Over time, this chronic triggering can make mast cells hypersensitive and hypervigilant. If you had to go weeks or months without sleep, you’d feel out of sorts too.

Then, the chemical messengers mast cells release may be:

Released too often
Released in excessive amounts
Released at the wrong times

This ongoing chemical release can create widespread inflammation and symptoms throughout the body.

And this reactive state can turn into a feedback loop where your body releases mediators that trigger further mast cell degranulation. You can see why it’s important to interrupt this cycle.

Haywire Mast Cells: A Histamine Example

Here’s an example of how this happens using one of the mast cell mediators many people have at least heard about — 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 surrounding mast cells to release more inflammatory mediators, like histamine. And then that can trigger more mast cells, which release more mediators… 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
Endometriosis
Asthma

And that just names a few possible symptoms of MCAS!

Here’s another problem with these dysregulated mast cells. They can start seeing everything as a threat.

Then you start reacting to things most people don’t.

Why You’re So Sensitive: Common MCAS Triggers and Reactions

You’ve probably heard the expression, “like 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 but someone found out 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, we 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 got sick.

Do you feel like you are a canary in the coal mine, too?

Do you have multiple food sensitivities?

Maybe you 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
Pesticides
Chemicals in cleaning products
Preservatives in junk foods
Air pollution
And more

Once the mast cells are overly responsive, you become hyper-sensitive to 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
Vibration
Deep tissue massage
Alcohol
Surgery
Injuries
Heavy metal toxicity
High stress
Certain medications
Mast cell triggering supplements
Trauma

Now that you understand how mast cells become hypersensitive, let’s look at how this shows up in your body as a wide variety of potential symptoms.

Why You Can Have Many Different MCAS 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 we’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 may have serious levels of food intolerances and gut issues. But you may think your dizziness is just dehydration, or something you’ve “always had.” 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 (chemical messengers) they can release

Sometimes, all the mast cells in the body can be affected. But more commonly a few mast cell locations (at least 2 or more) are heavily 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.

MCAS Symptoms: A List by Body System

How many do you have?

General

Overall fatigue and feeling bad
Food, drug, environmental, and chemical sensitivities
Chills
Sweats
Sense of being cold all the time
Inflammation
Swollen lymph nodes
Swelling

Muscles/Skeleton

Osteoporosis and osteopenia (even in young people)
Arthritis that moves around
General muscular and bone pain
Hyperflexible joints
Degenerative disk issues

Skin

Flushing
Hives
Rashes
Easy bruising
Reddish or a pale complexion
Itching
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
Rosacea
Psoriasis
Eczema

Heart

Feeling faint or fainting
Chest pains
Fast heart rate
Heart palpitations
Dizziness and lightheadedness when standing up
Low blood pressure

Digestion

Mouth burning
Gum inflammation
Diarrhea
Constipation
Cramping
Abdominal pain
Nausea
Vomiting
Reflux
Trouble swallowing
Throat tightness
Malabsorption
Bloating
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
Headaches
Migraines
Depression
Loss of pleasure in life
Nerve pains
Trouble with attention
Anxiety
Insomnia
Dizziness
Tinnitus
Numbness
Sweating
Temperature changes
Tingling and numbness in arms and legs
Other neurological symptoms like seizures

Lungs and Respiratory

Congestion
Coughing
Shortness of breath
Wheezing
Asthma
Increased mucous production
Postnasal drip
Sinus congestion
Frequent throat clearing
Sinus and/or nasal swelling
Nasal polyps

Eyes

Eye pain
Redness
Trouble focusing
Inflammation in the eyes
Blurry vision
Itchy, watery, or irritated eyes

Reproductive System

Endometriosis
Painful periods including cramping
Male and female infertility
Hormonal imbalances

Urinary Tract Symptoms

Inflammation of tissues
Burning
Pain with urination
Urinary tract infection type symptoms
Frequent urge to urinate

Anaphylactoid or Anaphylaxis Reactions

(These can be life threatening and may require immediate action like an EpiPen or epinephrine, for example.)

Allergic reactions
Feeling of impending doom
Difficulty breathing
Itchy skin
Hives
Flushing or pale skin
Feeling of warmth
Weak and rapid pulse
Nausea
Vomiting
Diarrhea
Dizziness and fainting

Other Conditions that May Be Related to MCAS

Fibromyalgia
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
Lupus
Hashimoto’s Thyroiditis
Guillain- Barré Syndrome
Graves
Sjogren’s 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.

MCAS Testing: Options, Challenges, and What You Need to Know

How many of those symptoms sounded familiar? And how do you know they are related to Mast Cell Activation Syndrome (MCAS)?

First, we 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 or can’t explain all your symptoms, you may want to consider Mast Cell Activation Syndrome.

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 debate about testing — particularly around whether tryptase should always be elevated in MCAS.

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
Improvement with removing triggers and supporting mast cells

So, what can you do about Mast Cell Activation Syndrome? Let’s end with you knowing there is hope!

Wondering if you have Mast Cell Activation Syndrome?

>>> Take the Mast Cell Activation Syndrome Symptoms Survey Here

Healing Mast Cell Activation Syndrome: A 3-Step Approach

Addressing Mast Cell Activation Syndrome isn’t a quick and easy fix. It takes time and work.

For the average client we work with, it takes 1 to 3 years to heal. But that doesn’t mean they don’t feel better along the way.

And we’ve worked with hundreds of people who’ve gotten their health and their lives back!

Many people with MCAS can get back to living full lives that don’t involve daily illness and symptom management. We know that can be difficult to imagine sometimes, so we want to make sure you see that there is reason for hope.

There are 3 major pieces to addressing Mast Cell Activation Syndrome and regaining your health:

Calm your nervous system

Calm your mast cells

Identify and address your root causes

Calm Your Nervous System

Why calm your nervous system? There are mast cells at every nerve ending. They talk back and forth constantly to each other. And if you have things like MCAS, Mold Toxicity, Lyme, or chronic stress your nervous system is likely also a little (or a lot!) haywire.

This tells your mast cells you’re in constant danger. So, you have to calm the danger signals from the nervous system to the mast cells.

We’ve found that calming the nervous system is at least 50% of the healing process.

In our Mast Cell Nervous System Reboot course, we’ll help you outline your roadmap to calm your body down. And build a framework you can plug tools into that best suit you.

After all, the best nervous system work is the work that you will enjoy and do. And that’s different for everybody!

Mast Cell Nervous System Reboot

Calm Your Mast Cells

Medications and/or supplements can help calm your mast cells and help with Histamine Intolerance.

Common medications your provider may suggest include:

H1 blockers:

Diphenhydramine
Loratadine
Fexofenadine
Cetirizine (brand names are Benadryl, Claritin, Allegra, Zyrtec)

H2 blockers:

Famotidine
Cimetidine (brand names are Pepcid or Tagamet)

Leukotriene blockers:

Montelukast (brand name is Singulair)
Zafirlukast (brand name Accolate)

Corticosteroids:

Prednisone

IgE blockers:

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 our favorite starting points are:

Baking soda (if blood pressure is low)
DAO (diamine oxidase)
Isoquercetrin
Baicalin
Perilla

Most people with Mast Cell Activation Syndrome will need a combination of nervous system supports and mast cell supports to calm things down. And they need to do it in the right order.

And many people have tried supplements or medications only to feel worse! But there are reasons for this.

It’s more than we can fit in 1 post. Which is why we’ve created courses. We’ll explain supplements, onboarding things when you’re sensitive, and troubleshooting reactions in the Top 8 Mast Cell Supporting Supplements Master Class.

Top 8 Mast Cell Supporting Supplements

Address Your Root Causes of MCAS

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 we see 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 along the way.

95% of the clients we’ve worked with through the Mast Cell 360 practice have seen improvements. They’ve gone on to feel much, much better.

We are always very up front, though. We 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 the Precision Mold Master Class.

MC360 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 Resources for Understanding MCAS

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.
Histamine Intolerance vs. Mast Cell Activation Syndrome — Despite having similar symptoms, you should know the difference between these two conditions.
Mold Toxicity — Not sure how to find out if mold is triggering your symptoms? This post will help you narrow down the root cause.

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