Mast Cell Activation Syndrome is recently believed to affect close to 17% of the US population. In the conventional medical field it often goes misdiagnosed and poorly managed leaving many people with persistent, debilitating symptoms. It’s important to increase awareness of this condition and put an end to medical gaslighting many MCAS patients experience when presenting to their doctor.

Mast cells are located throughout almost every organ of the body, but occur in highest concentrations where the body is in direct contact to the external environment (nose, skin, gastrointestinal tract, lungs, etc).

For some, symptoms are mild and occur infrequently, while for others, symptoms can be quite severe, seriously effecting their quality of life. Many organ systems can lead to seemingly unrelated symptoms making it difficult to diagnose.

Some of the most common MCAS symptoms include (note five or more organ systems with symptoms is pretty indicative of MCAS):

• Fatigue, brain fog,
• Pain syndromes
• Digestive distress after eating
• Skin flushing, heat flushes, and sweating
• Feeling allergic to heat or sun (flushed, itchy, fatigued, edematous, brain fog)
• Urticaria (hives) or other unexplained skin rashes (especially post-exercise)
• Skin itching worse with heat and exercise
• Multiple food sensitivities or allergies (especially to food dyes)
• Chemical sensitivity – sensitive to scents or exposures
• Mild, moderate or severe seasonal allergies
• Sneezing, post-nasal drip, cough, itchy eyes
• Fainting, lightheadedness, dizziness, vertigo
• Burning pains, neuropathy, neuralgia
• Mood disorders
• Weight loss or gain
• Headaches and migraines
• Feeling allergic to alcohol (flushed, nausea, vomiting, mood changes)
• Pain or difficulty urinating, bladder fullness
• Anemia or abnormal bleeding
• Swelling of hands and/or feet
• Tachycardia
• Stuffy, drippy nose after eating
• History of cyst formation
• Sensitive to altitude and air travel

Note: All of these symptoms worsen with stress that is either physical or emotional and no other disease process better explains the symptoms.

Common comorbid conditions include POTS and Ehlers-Danlos Syndrome.

There are three types of MCAS: primary, secondary and idiopathic depending on the cause(s) of the condition. MCAS is most commonly secondary to an allergic or chronic inflammatory response or disorder. Systemic mastocytosis is rare and can be genetic or due to changes in bone marrow or mast cell progenitors.

Triggers of MCAS symptoms can vary greatly from person-to-person. Common triggers include alcohol, artificial dyes (FD&C), mold, infections, extreme heat/sun exposure, skin products (shampoo/conditioner/soap/face wash/all lotions/deodorant), certain foods, and malnutrition.

One of the biggest triggers is stress, either physical, mental, and/or emotional, and nervous system activation.

The diagnosis of MCAS be very difficult and requires a physician that has extensive experience with these conditions. There are a group of specialists that have put forth “diagnostic criteria” based on symptoms, blood testing, and response to treatment; however, this method misses many patients because accurate blood tests are often hard to get.

For our physicians at Aspen, we diagnosis MCAS based one or more of the following characteristics:

• Comprehensive patient intake including health history, symptoms, and physical exam.
• Positive response to mast cell medications and/or treatment. 
• Blood testing – CBC, CMP, nutrient markers, clotting markers, tryptase, chromogranin A, plasma prostaglandin D2, histamine, heparin, immunoglobulin levels, ANA w/ reflex, etc. While lab values can be very helpful, it’s important to understand that mast cell mediators such as heparin, histamine, tryptase, etc are VERY difficult to get accurate/reliable results. This is because they require very specific lab draw instructions (sensitive to heat), have short half-life (must be processed quickly), and will only be abnormal in a flare.
• Urine testing – N-methylhistamine, PGD2, leukotriene E4
• Ruling out other conditions and co-morbidities that can explain your symptoms such as mastocytosis, Eosinophilic Esophagitis (EOE), Burning Mouth Syndrome, etc.
• You may need to do an endoscopy and/or colonoscopy. May also need to do a biopsy of the skin, GI tract, and/or bone marrow.

Treatment of MCAS requires time, regular follow-up, and patience on the part of the providers and patients. It can take several months to years to identify the triggers and heal the immune system. The goal is always full reversal of MCAS symptoms, but initially treatment many include symptom management that allows for the least restrictive lifestyle possible and the best possible quality of life.

Our approach to alleviating symptoms of MCAS includes:

• Treating comorbid conditions, including POTS, mold toxicity, infections, toxicity, CIRS, other environmental exposure, food sensitivities and Ehlers-Danlos Syndrome.
• Trigger avoidance can be very important and most challenging to implement. Triggers can change from week to week, so are hard to identify at first. What is triggering when an individual is under increased stress may not result in a flare when the individual is well nourished, rested, and not exposed to physiologic, emotional, psychologic stressors.
• Nutritional supports including IV therapy
• Botanical medicine 
• Biotherapeutic drainage
• Homeopathy
• Nervous system desensitization and mind body medicine
• CST and visceral manipulation
• Tailoring of pharmaceuticals with most up-to-date management tools. Medications fall under two broad categories for outcomes: 1) mast cells stabilizers, and 2) histamine blockers.  Medications typically started in a stepwise manner and adjusted to minimize medication needed to provide relief.

MCAS is considered a type of dysautonomia, which means it involves dysfunction of the autonomic nervous system, the part of the nervous system that regulates involuntary bodily functions such as heart rate, blood pressure, digestion, and temperature control. While the exact cause of MCAS is not always clear, it is believed to involve a combination of genetic predisposition, environmental factors (such as mold toxicity), and physiological changes. It is also heavily associated with hypermobility spectrum disorders and POTS.