The Basics of MCAS

This post covers the basics of MCAS, pronounced em-cass–what it is, what the triggers are, diet, symptoms, and typical treatments.

What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis. MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments involve using antihistamines, mast cell stabilizers, and avoiding triggers. Check out this post on how to manage MCAS.

What are mast cells?

Mast cells are part of our bodies that cause immediate allergic reactions, and by releasing parts of their cells called “mediators” they cause allergic symptoms. This process works in concert with antibodies; the triggering is known as “activation.” When too many mediators are released the body begins to act as though it is under significant threat, though what is causing the release may be benign. For many people with Mast Cell Activation Syndrome, or MCAS (pronounced em-cass), normal healthy foods, environmental stimuli like scents, temperature variation, and even stress become triggers. When too many mediators are released allergic symptoms escalate leading to major allergic events and even anaphylaxis.

Diagnosis of MCAS

There are several issues that stand in the way of being easily diagnosed and treated for Mast Cell diseases. Part of the problem with having a Mast Cell disease (there are several) is that knowledge about them is not yet widely available. Where I live in Minnesota there are only two or possibly three knowledgeable providers who specialize in MCAS. Many functional providers know about it and can help with diagnosis and treatment. But there needs to be much more research and advocacy so that upcoming medical doctors know about (and don’t dismiss) Mast Cell diseases.

Mast Cell diseases can look like other diseases, and patients are often misdiagnosed for years before they finally figure out what is going on. The iagnostic tests for Mast Cell diseases are extraordinarily finicky, and many people are misdiagnosed due to faulty testing. Many uninformed providers suggest that patients stop taking the drugs controlling their symptoms before testing, which can cause catastrophic symptom flares.

Symptoms of MCAS

The range of symptoms that can occur in Mast Cell diseases covers practice areas from hematology to dermatology to oncology to rheumatology, with many possible other areas. Because there is not one area of the body affected by Mast Cell diseases there is a tendency of medical providers to pass patients off to another provider who presumably knows more about it. But in reality, there are only a handful of providers who specialize in Mast Cell diseases in the US. To be properly diagnosed you need to travel to Alberta Canada, New York, and a number of other places. Here is another list of providers.

What are the triggers for MCAS?

The common triggers for MCAS are infections, toxic exposures including mold exposure and EMFs, trauma, concussions, and stress.

Infections – Infections become a root cause of MCAS because they damage the nervous system, specifically the vagus nerve. Mast cells line the entire nervous system and they have over 200 types of receptors that are sensitive to all sorts of stimuli. An infectious trigger will alert the nervous system that the body is under attack. This in turn triggers a mast cell cascade to bring resources to the site of the perceived attack, including increased inflammation. MCAS is really a protective function in the body at the cellular level to bring healing where the body is under attack. But the problem with chronic infections is that they perpetually notify the nervous system via biochemical mediators that the body is constantly under attack. So, even after a course of antibiotics or an herbal protocol to address the infection, unless you address the injury to the nervous system, the limbic and nervous systems will continue to think the body is under attack.

Toxins – Toxic exposure can cause vagus nerve damage, which signals to the brain that the body is not safe. When there is a continuous message that the body is unsafe mast cells overreact and congregate at the perceived site of toxic injury, creating more inflammation, and perpetuating the cycle of over-reactivity.

Stress – Stress significantly contributes to mast cell activation syndrome by dysregulating the immune and nervous systems, leading to the overactivation of mast cells. Mast cells are immune cells that release histamine and other inflammatory mediators in response to perceived threats.

Trauma – Trauma contributes to mast cell activation syndrome by disrupting the nervous system and immune response, creating an environment where mast cells become hyperactive and overreact to triggers. Trauma induces chronic stress, which alters mast cell sensitivity. Stress-related hormones like corticotropin-releasing hormone (CRH) directly stimulate mast cells, increasing the release of histamine, cytokines, and other inflammatory mediators. Over time, mast cells become more reactive, amplifying symptoms such as flushing, pain, and gastrointestinal issues.

Concussions – Concussions can trigger mast cell activation syndrome by causing inflammation, nervous system dysregulation, and immune system activation. A concussion induces neuroinflammation, releasing cytokines and other inflammatory mediators in the brain. Mast cells, present in the brain and throughout the body, are activated by this inflammation, releasing histamine, prostaglandins, and other substances that further amplify the inflammatory response.

The bucket theory

The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.

Know your typical symptom progression

Knowing your symptom progression in a symptom flare is the key to developing your rescue plan. This post discusses how to recognize your symptom progression so you can be prepared to address those symptoms.

Ways to manage MCAS

This post covers many strategies for managing MCAS including:

• Diet – Many people with MCAS benefit from a low histamine diet.
• Beneficial frequency
• Homeopathy
• Having a routine
• Nervous system retraining – Nervous system retraining is a process that uses neuroplasticity techniques to retrain the brain and nervous system to respond differently. MCAS symptoms are often worsened by dysregulation of the Autonomic Nervous System (ANS), especially an overactive sympathetic (fight-or-flight) branch. I have used many techniques that promote parasympathetic (rest-and-digest) activation, such as deep breathing, meditation, sound healing, and vagus nerve stimulation, to calm mast cell activity and reduce symptom flares. However, the Safe and Sound Protocol (SSP) is the most effective technique I have found to calm my ANS and promote a parasympathetic state, and I am excited to share this with my clients.

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Treatments for MCAS

Common treatments for MCAS include:

from https://www.mastcellaction.org/management

The Safe and Sound Protocol (SSP)

My MCAS was caused by concussions, caregiving trauma, infections, mold and exacerbated by SIBO

I began using the SSP in November 2023. Before starting the SSP I tried many different trauma healing programs, limbic system and vagus nerve healing therapies, and nervous system retraining programs including Eye Movement Desensitization and Reprocessing (EMDR), Quantum Neuro Reset Therapy (QNRT), Somatic Experiencing, Frequency Specific Microcurrent (FSM), Emotional Freedom Technique (EFT), Dynamic Neural Retraining System (DNRS), Cranio Sacral Therapy, Osteopathic Therapy, and others. The SSP was by far the most straightforward, easy to use, and effective of these therapies.

My worst symptoms were chemical sensitivities, food sensitivities, neuropathy, temperature dysregulation, migraines, inflammation, and pain. I also had trauma loops that were interfering with my everyday happiness. 

While using the SSP my nervous system healing took place in stages, with a physical symptom healing, and then I would notice more mental and emotional resiliency. When I started the SSP I was taking dozens of medications and supplements to manage my symptoms, I couldn’t eat more than 12 foods, and I couldn’t exercise due to pain and inflammation.

Over time I regained the ability to eat almost all foods (I still avoid gluten and sugar), I was able to cut back the number of medications and supplements I was taking to 12, and I could have a regular exercise routine for the first time in decades. I even solo backpacked over 300 miles last summer! As my vagus nerve healed I had less and less sensitivity to environmental triggers such as EMFs, my mast cell symptom flares greatly reduced, and my pain and inflammation disappeared.

The SSP is Helpful for

• Trauma history
• Depression and anxiety
• Autism, hyperactivity, and attention
  Chronic pain
• Chronic health conditions
• Sensory and auditory processing

Background on the nervous system

The Autonomic Nervous System (ANS) – The primary role of the autonomic nervous system (ANS) is to keep us alive, especially in response to stress. The ANS regulates essential bodily processes, including heart rate, breathing, and digestion. The ANS operates below our conscious awareness, meaning it works without us having to think about it. The ANS helps regulate important systems in the body, including our heart rate, blood pressure, breathing, and digestion.

Vagus nerve health – The vagus nerve is the longest nerve in the human body, running from the cranium, around the digestive system and lungs. It passes through the neck via the vocal cords and passes around the major organs of the liver, spleen, pancreas, heart, and lungs. The vagus nerve is an integral part of the parasympathetic nervous system, which is key to our capacity to rest, digest, calm, and soothe. Having a healthy vagus nerve enables you to adapt to stressful situations, helps regulate cortisol and blood sugar levels, and is associated with feeling more relaxed. Having a healthy vagus nerve equates to a higher vagal tone, whereas a low vagal tone is related to many maladies, including heart disease, diabetes, mood disorders, inflammatory conditions, and autoimmune dysfunction.

Polyvagal Theory – Polyvagal theory, developed by Stephen Porges, describes how the autonomic nervous system regulates feelings of safety and how these feelings can support social interactions.

Polyvagal theory can help explain social, emotional, and communication behaviors and disorders. 

It can also help explain how trauma can cause physical symptoms and can help people build resilience and regulation.

• Neuroception – The nervous system evaluates risk through an involuntary neural process called neuroception.

• Nervous system dysregulation – Nervous system dysregulation refers to an imbalance within the body’s nervous system, disrupting its ability to appropriately respond to stimuli, often manifesting as physical and emotional symptoms due to an overactive “fight or flight” response and an inability to properly transition to a “rest and digest” state. Essentially, it’s when the body’s internal alarm system becomes overly sensitive and can’t regulate itself effectively, leading to symptoms like anxiety, mood swings, fatigue, and difficulty concentrating. Nervous system dysregulation is often at the root of MCAS.

How the SSP works

• The SSP’s music has been specially filtered to highlight frequencies of sound that typically make us feel safe
• The filtered music exercises the muscles of the middle ear and tones the eardrum, so you hear the world differently
• This stimulation indirectly activates the ventral vagal complex (a component of the parasympathetic nervous system). Activation of the ventral vagal complex promotes feelings of safety and calm, reducing the fight-or-flight response associated with anxiety and depression.
• Beyond listening, you do not have to “do” anything to experience the benefits of the SSP

How the SSP helps the nervous system regulate

• Music is filtered for safety – The SSP’s music has been specially filtered to highlight frequencies of sound that typically make us feel safe. Higher and lower frequencies are associated with trauma, and people in a chronic state of activation are unable to hear the middle frequencies of sound. The SSP exercises the muscles of the inner ear and tones the eardrum so that you can hear middle frequencies so that “cues of safety” can be received by the nervous system.
• The SSP improves regulation of the ANS – Anxiety and depression often stem from chronic dysregulation of the ANS, leaving individuals stuck in states of sympathetic overactivation (fight-or-flight) or dorsal vagal shutdown (freeze or collapse). The SSP helps shift the nervous system into a more balanced state, enabling better emotional regulation and resilience.
• The SSP enhances social engagement and connection – According to Polyvagal Theory, feeling socially connected and safe is critical for emotional well-being. The SSP targets the neural pathways involved in the social engagement system, enhancing the ability to connect with others, which is often impaired in individuals with anxiety and depression.
• The SSP reduces hypervigilance and sensory sensitivities – Many individuals with anxiety or depression experience heightened sensory sensitivities and hypervigilance. The SSP’s auditory stimulation reduces auditory hypersensitivity and helps recalibrate sensory processing, creating a greater sense of ease and relaxation.
• The SSP supports neuroplasticity and emotional processing – By calming the nervous system, the SSP facilitates the brain’s ability to reorganize itself (neuroplasticity). This enhances emotional processing and receptivity to other therapeutic interventions, such as counseling or mindfulness practices.

Sign up for the SSP!

The SSP is a listening therapy based on Polyvagal Theory created by Stephen Porges to unlock your ability to think, feel, and connect better through nervous system regulation. You use the SSP via an app on your phone and listen with over-the-ear headphones to specially filtered music that heals the nervous system, specifically the vagus nerve. You subscribe to the app with a provider like me and listen to the specially curated music for 30 minutes each day for a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions

You can sign up for the SSP here!

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Rocks and Roots chronicles my journey solo backpacking the Superior Hiking Trail and overcoming nervous system dysregulation, gut dysbiosis, and Mast Cell Activation Syndrome symptoms to hike 328 miles successfully.

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Disclaimer

The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure or treatment. Always seek advice from your medical doctor.