Diagnosing and Treating Mast Cell Activation Syndrome

Mast cell activation syndrome (MCAS) is a medical condition that causes a person to have repeating bouts of severe allergy symptoms including hives, swelling, low blood pressure, shortness of breath, severe diarrhea, and in extreme cases, loss of consciousness or death.

Symptoms may be triggered by anything ranging from sudden temperature changes and exercise to physical or emotional stress, insect bites or stings, exposure to sunlight, certain foods and beverages, or something as mundane as clothing rubbing against the skin.

Because the triggers and symptoms can be so wide ranging, people with mast cell activation syndrome may suffer for many years — even decades — without receiving an accurate diagnosis or effective treatment.

This post explains what mast cells are, the common symptoms of mast cell activation syndrome, and how we diagnose and treat mast cell activation syndrome here at Restoration Healthcare.

What Are Mast Cells?

We all have mast cells in our bodies — they start their lives as white blood cells produced by bone marrow. They’re then released into the blood stream and travel to various tissues throughout the body where they fully mature. You have them in your skin, connective tissue, intestinal lining, cardiovascular and nervous systems, and even in your reproductive organs — mostly in tissues that come into contact with anything from the outside world.

When you’re injured or when a pathogen such as a potentially harmful bacteria, virus or parasite enters your body, the event triggers a chain reaction in your immune system that causes the mast cells to release chemical substances that promote healing or the eradication of the pathogen. For example, histamine increases blood vessel permeability to deliver healing agents to an injured site. What you experience are inflammation (due to increased permeability of blood vessels) or stomach cramps and heart palpitations (from muscle contractions) or congestion and sneezing (from increased mucous production). These symptoms are positive signs that your body is healing itself.

That’s what happens when mast cells behave as they should.

Mast cell activation syndrome is the result of mast cells behaving badly, and it’s worse if you have an excessive accumulation of functionally defective mast cells (a condition called mastocytosis). However, even if you have a normal number of mast cells, the mast cells you have may be overly sensitive and release excessive chemical mediators even when you have no injury or infection or other condition that activates a normal mast cell response.

Mast Cell Activation Syndrome (MCAS) Symptoms

The list of symptoms associated with MCAS is extensive and includes the following:

• Allergies and sensitivities: Food allergies; reactions to medicines, perfumes, or certain odors or scents; allergy-like symptoms; severe reactions to insect bites or stings.
• Cardiovascular: Chest pain, fainting or near fainting, heart palpitations, rapid heartbeat, swelling.
• Dermatologic: Flushing with or without sweating, hair loss, hives (red, itchy bumps), itching, poor healing (for example, a cut that takes forever to heal), rashes.
• Eyes, nose, head, throat, mouth, neck, ears: Eye irritation, dryness, gritty, or burning; ringing in the ears; significant dental enamel loss or cavities; sinusitis; swollen glands.
• Gastrointestinal: Abdominal pain, acid reflux, change of bowel habits, difficulty swallowing, heartburn, nausea, diarrhea.
• General: Exercise intolerance, fatigue, fevers.
• Hematological: Easy bruising or bleeding, frequent or odd infections, swollen lymph nodes.
• Metabolic: Suddenly feeling cold or hot, weight gain or problems losing weight, unexplained weight loss.
• Musculoskeletal: Joint or muscle pain.
• Neurologic: Anxiety, depression, dizziness, numbing or tingling, restless leg syndrome, trouble thinking (brain fog), panic attacks.
• Respiratory: Asthma, chronic cough, shortness of breath, wheezing.
• Urinary and pelvic: Frequent urination, the sudden need to urinate, pelvic pain.

Diagnosing Mast Cell Activation Syndrome: The Three Criteria

The diagnostic criteria and methodology for MCAS have yet to be settled, but the current criteria proposed by the American Academy of Allergy, Asthma, and Immunology are helpful. For a person to receive a diagnosis of MCAS, the following three criteria must be met:

1. Recurrent episodes of severe allergic reactions (anaphylaxis) present throughout the body and involving at least two of the following four systems:
   1. Integumentary, specifically the skin
   2. Cardiovascular
   3. Respiratory, specifically the lungs
   4. Gastrointestinal
2. Symptoms must be associated with an increase in specific mast cell mediator levels in the blood or urine, including histamine, tryptase, PDG2 and its metabolites, and LTC4 and its metabolites.
3. Anti-mast cell mediator therapy must result in a complete resolution of symptoms and a reduction in mast cell mediator levels.

Our Approach: Restoring Long-Term Whole-Body Health

Mast cell activation syndrome often goes undiagnosed because people who have it typically seek relief only for specific symptoms such as congestion or hives. The treatment suppresses the symptoms but fails to address the underlying cause(s).

When people come to see us for help with symptoms that may be attributed to MCAS, we don’t just assume MCAS, because so much else could be going on below the surface. These could include food or airborne allergies or sensitivities, emotional stress, physical stress, leaky gut, toxins, reactions to certain chemicals, and so on.

Ours is not a one-size-fits-all approach. We begin by interviewing our patient to find out what was going on prior to the onset of symptoms. In some cases, an entire chain of events over a long period of time is the mechanism by which health is disrupted. In other cases, it’s less of a chain reaction and more like a cluster bomb.

Based on what we discover during patient intake, we order targeted tests to gather more information about the underlying cause(s) of the body’s dysfunction. These may include tests for:

• Nutrient levels
• Food allergies, intolerances, or sensitivities
• Toxins (such as mold)
• Lyme disease
• Infections

After gathering the data we need, we analyze it to identify the underlying cause(s) and then prioritize treatments. For example, if the patient has nutritional deficiencies, we may provide intravenous (IV) nutrient therapy. If gut health and function are compromised, we focus our treatment on repairing the gut and restoring proper function. If our patient is subject to emotional or environmental stressors, we work on addressing those issues. If the patient is sensitive to certain foods, we remove those foods from the diet. We tailor our treatments to each patient.

As we gradually restore healthy function to the body, symptoms typically begin to subside, and our patient begins to feel much better overall. However, we continue to monitor through follow-up interviews and tests and adjust our treatments accordingly.

In many cases, restoring health resolves any issues related to mast cell integrity, but if symptoms persist, we can test for and treat the MCAS specifically.

Testing for MCAS

From observing a patient’s symptoms, we can usually tell whether they have elevated levels of immune system mediators. Our task is to find out which mediator levels are elevated and why. Ultimately, we want to identify the condition that’s causing the elevated levels and rule out other possibilities. To pin down the diagnosis, we order lab tests to check the blood and urine for elevated levels of immune system mediators and other markers of MCAS, such as Prostaglandin D2, Chromogranin A, N-Methylhistamine, and Leukotriene E4.

It is difficult to test for Mast Cell Activation Syndrome because the markers for elevated immune system mediators are so volatile and can degrade with heat. Several factors can negatively impact the accuracy of test results, including:

• Mishandling of samples, specifically failure to refrigerate samples
• Use of a proton pump inhibitor, such as Prilosec, within five days of chromogranin testing
• Use of a nonsteroidal anti-inflammatory drug (NSAID) within five days of plasma prostaglandin D2, histamine, and heparin testing; chilled random urinary prostaglandin D2, N-methylhistamine, and leukotriene testing; or chilled 24-hour urinary prostaglandin D2 and N-methylhistamine and leukotriene E4 and 2,3,-dinor 11-beta-prostaglandin-F2-alpha testing

Ideally, we test during a flare-up of symptoms. Sometimes, we need to do two to three rounds of testing before we catch one elevation.

If up to three rounds of properly handled non-invasive testing for MCAS, and properly assessed CD-117 staining of any available old biopsies, all fail to find sufficient laboratory evidence to permit a definitive diagnosis, we proceed with “Plan B” — a fresh set of upper and lower GI tract endoscopies for the express purpose of obtaining a systematic series of biopsies throughout the upper and lower GI tracts principally for staining with CD-117 to look for increased mast cells.

We closely examine patterns in test results that are characteristic of mast cell activation syndrome or of conditions other than MCAS, such as mastocytosis. For example, a tryptase concentration higher than 20 ng/ml is more indicative of mastocytosis than it is of MCAS.

Mast Cell Activation Syndrome Treatments

As explained earlier in this post, we do not generally treat an illness. Our objective is to restore health and hope. Health is not merely an absence of illness or symptoms. However, if symptoms persist after we address other underlying issues, and test results indicate MCAS, we can calm mast cell activity with the following treatments:

• Histamine-1 (H1) blockers including Claritin, Benadryl, and Zyrtec
• Histamine-2 (H2) blockers including Tagamet and Pepcid
• Mast cell stabilizers: Singulair (aka Montelukast) and Cromolyn. Natural mast cell stabilizers include: Bromelain, Curcumin, Epigallocatechin gallate (EGCG — a green tea extract), Luteolin, Magnesium, Palmitoylethanolamide, Quercetin, Rutin, Theanine, a green tea extract, and Zinc

Caution: Don’t use this list to self-medicate. Without testing, you can’t possibly know what’s going on deep inside your body, and you run a significant risk of taking supplements that create imbalances, which can cause other health issues.

If you or a loved one is experiencing any of the symptoms described in this post, we urge you to schedule a consultation with a doctor who practices functional and integrative medicine. You may have MCAS or something else entirely. A functional and integrative medicine practitioner can conduct a full workup and identify and treat any and all underlying medical conditions. That’s how we get you back to feeling your very best.

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Disclaimer: The information in this blog post about mast cell activation syndrome is provided for general informational purposes only and may not reflect current medical thinking or practices. No information contained in this post should be construed as medical advice from the medical staff at Restoration Healthcare, Inc., nor is this post intended to be a substitute for medical counsel on any subject matter. No reader of this post should act or refrain from acting on the basis of any information included in, or accessible through, this post without seeking the appropriate medical advice on the particular facts and circumstances at issue from a licensed medical professional in the recipient’s state, country or other appropriate licensing jurisdiction.