Unraveling Mast Cell Activation Syndrome: Symptoms, Causes, and Diagnostic Challenges

In this complex and often misunderstood condition known as Mast Cell Activation Syndrome (MCAS), mast cells are inappropriately activated, giving rise to a broad spectrum of symptoms that affect multiple organ systems. This article aims to explore the common symptoms of MCAS, postulated causes, conditions sharing similar symptoms, and the pivotal tests employed for diagnosis.

Common MCAS Symptoms

Individuals grappling with MCAS frequently contend with persistent and incapacitating fatigue that often proves unresponsive to rest.  This leads many people to believe that MCAS is the underlying cause of Chronic Fatigue Syndrome (CFS).

While antihistamines may offer relief by lowering high histamine levels commonly seen in the disorder, conventional pain medications may fall short in effectively managing the widespread body pain associated with MCAS.  This symptom is often “diagnosed” as “fibromyalgia.”  Sadly, once that label is applied to a person’s personal health record, it never goes away.  When doctors hear this label, they switch off their brains and quit looking for the cause.  Once a fibro patient, always a fibro patient.

Bloating, abdominal pain, and other gastrointestinal issues manifest as common symptoms of MCAS.  These symptoms are generally dismissed after a patient gets an endoscopy and colonoscopy that appear normal.  By contrast, integrative health practitioners use a gut bacteriological and parasite test to look further than conventional doctors.)

Heightened sensitivities to various environmental factors, including chemicals, smells, dyes, and fragrances, are observed in individuals with MCAS.  Frequent skin manifestations of MCAS include migratory rashes and hives are also common.

Exercise-induced shortness of breath is a prevalent symptom, reflecting the impact of mast cell activation on respiratory function.  Episodes of low blood pressure, contributing to dizziness and fainting in some cases, are associated with MCAS.

Another confusing symptom is fluctuating vision problems.  These add to the complexity of symptoms experienced by individuals with MCAS.  Anxiety, often unrelated to external stressors, is a common neurological symptom associated with MCAS.  Both of these symptoms can be directly tied to high histamine levels in the brain.

Hypothesized Causes of Mast Cell Disease

Environmental and food mold exposure is considered a potential trigger for MCAS. Testing for mycotoxins, which can persist in the body for extended periods, may be conducted to identify and address mold-related issues.  It is also worth noting that for people with MCAS, detoxing from mold can be harder than it is for the average person.

Various infections, such as Epstein Barr Virus, COVID (leading to Long COVID), Lyme disease, and herpes, have been linked to the development or exacerbation of MCAS.

Conditions With Similar Symptoms:

Small Intestinal Bacterial Overgrowth (SIBO) may present with symptoms like gas and bloating, resembling those of MCAS. Distinguishing between the two is crucial for accurate diagnosis and appropriate treatment.

MCAS may be mistaken for histamine intolerance, where the body lacks sufficient diamine oxidase (DAO) to break down histamines. Understanding the differences is vital for effective management.

Common Tests for MCAS

Testing for elevated histamine levels can indicate mast cell activation.

N-Methyl-Histamine levels, another marker for mast cell activation, are often assessed in conjunction with histamine levels.

Elevated levels of tryptase, although more commonly associated with mastocytosis, can sometimes be observed in MCAS during flare-ups.

Measuring prostaglandin D2 levels helps assess the inflammatory response associated with MCAS.

Elevated chromogranin A levels may indicate mast cell activation and are included in the battery of tests for MCAS diagnosis.

Other Relevant Tests 

Functional medicine tests, such as the Organic Acids Test, can help reveal various other causes and complicating factors for MCAS.  Likewise, the Omega-3 test can show elevated levels of inflammation which are common in people with MCAS.  The Hair Mineral Tissue Analysis test can also help to identify which minerals may be lacking or exist in toxic levels as well as heavy metals that may be hiding out in the system.

Mast Cell Activation Syndrome poses a significant challenge, necessitating a comprehensive understanding of its diverse symptoms and potential triggers. Achieving accurate diagnosis involves differentiating MCAS from other conditions with similar presentations and conducting specific tests to identify mast cell activation. As research progresses, a multidisciplinary approach involving healthcare professionals from various specialties becomes crucial for managing and enhancing the quality of life for individuals with MCAS.