Understanding MCAS: The Hidden Immune System Disorder

Imagine living with your body constantly sounding false alarms. Your heart races, your skin breaks out in hives, you experience severe digestive issues. But then it goes away. The diarrhea causes severe atypical depression, tremors, and panic attacks, from very light to a severe attack. Then goes away. You might not associate this with anything you’ve ever known. Most likely don't even associate the symptoms. You feel like you're having an allergic reaction—but to what? For months, even years, doctors tell you they can't find anything wrong. This is the reality for millions of people living with Mast Cell Activation Syndrome, or MCAS.

What is MCAS?

Mast cell activation syndrome (MCAS) is a condition that causes intense episodes of swelling, shortness of breath, hives, diarrhea, vomiting and other symptoms. In severe cases, it may lead to life-threatening anaphylaxis.

To understand MCAS, we need to understand mast cells. These are immune system cells that normally protect us from harmful invaders like parasites and viruses. They sit in your tissues and when they recognize something they think is harmful, they release histamine and other chemicals to activate your immune system and try to flush out the intruder. There are many mast cells in connective tissue and Lipedema adipose tissue, therefore it is more common in Lipedema Ladies

But in MCAS, something goes wrong. Sometimes, they react to things they shouldn't, which is why you get allergies. But allergies usually only make your eyes itch or your nose run, or give you other mild symptoms. MCAS causes more serious symptoms without specific triggers.

The Diagnostic Challenge

MCAS is often difficult to identify due to the heterogeneity of symptoms and the "lack of flagrant acute presentation."

Many of the numerous symptoms are non-specific in nature. The symptoms can affect virtually every body system:

• Cardiovascular: rapid heart rate, blood pressure changes

• Skin: hives, flushing, itching

• Gastrointestinal: severe diarrhea, cramping, nausea

• Respiratory: difficulty breathing, wheezing

• Neurological: brain fog, headaches, anxiety, atypical depression

A workshop in 2022 proposed three diagnostic criteria:

1. Severe, recurring symptoms involving at least two organ systems linked to mast cell chemicals

2. Elevation of mast cell chemicals (e.g., tryptase, histamine, etc.) during symptomatic periods

3. Improvement of symptoms through medications that either block the effects of mast cell chemicals, such as antihistamines, or suppress mast cell activation directly

Laboratory Markers and Diagnostic Testing

Understanding MCAS requires sophisticated laboratory testing, as no single test can definitively diagnose the condition. Some labs are only positive if in an immediate flare. Others require 24-hour urine samples. A negative results, does not mean you don't have MCAS

The Hidden Prevalence

MCAS affects approximately 17% of the population. Despite this, it is rarely recognized, and patients can suffer for years or even decades.

Understanding the Causes

Causes of mast cell activation include:

• Foods (especially high-histamine foods)

• Environmental chemicals

• Physical factors (heat, cold, exercise)

• Emotional stress

• Infections

• Medications

• SIBO, mycotoxin exposure, heavy metal toxicity

Genetics may also play a role. Mutations in the KIT gene, especially at codon 816, have been linked to MCAS.

Treatment: A Multi-Pronged Approach

There’s no cure, but treatment can improve quality of life dramatically.

Emergency Treatment

• Always carry two doses of epinephrine (nasal spray or auto-injector)

Daily Management

1. Antihistamines (H1 and H2 blockers)

2. Mast Cell Stabilizers

3. Leukotriene Modifiers

4. Lifestyle Modifications

   • Gluten-free, dairy-free, and low-histamine diet

   • Identify and avoid triggers

The Neuropsychiatric Connection

MCAS is associated with neurologic and psychiatric conditions:

• Headache

• Dysautonomia

• Depression

• Generalized anxiety disorder

• Panic attacks

• Tremors

Treatment can improve psychiatric symptoms, suggesting many cases of treatment-resistant mental illness may stem from underlying MCAS.

MCAS represents a shift in how we view chronic illness. If you experience unexplained, recurring multi-system symptoms—especially if they involve flushing, GI distress, or mimic allergic reactions without known triggers—MCAS may be the root cause.

I assess for MCAS in my Lipedema Evaluation and/or Primary Health Evaluation

OPTIMIZE!!! with me,

Carla Whorton, NP
Scottsdale, AZ