Mast cell activation syndrome was first recognized as a serious medical condition only a decade ago. With its myriad, ever-changing symptoms, it can be one of the most difficult conditions to diagnose and manage. If you’re living with mystery symptoms, especially allergic-type reactions that seem to come out of nowhere, you could have mast cell activation syndrome (MCAS).
What Are Mast Cells?
Mast cells are the fastest, most reactionary part of the immune system, oftentimes activating in sub-second time to any number of triggers. The role of mast cells is to respond to foreign threats, pathogens, and allergens. For example, when you have a severe allergy attack due to hay fever or exposure to a heavy perfume, those are your mast cells causing temporary inflammation, swelling of nasal passages, sneezing, runny nose, and watery eyes.
With most allergy attacks, symptoms lessen in severity after you’ve removed yourself from the allergen and/or taken an antihistamine. However, in mast cell activation syndrome, mast cell mediators get released into various parts of the body regardless of whether or not a foreign substance, pathogen, or allergen is present.
Mast cells can affect any and all parts of your body, either one at a time, all at once, in response to an outside stimulus, or in the absence of one. This inappropriate, system-wide release of mediators is what is known as mast cell activation syndrome.
Because symptoms can be sudden and unpredictable at onset, it can be incredibly frightening not to mention frustrating as you and your doctors try to understand why these symptoms are present and what’s causing them.
Symptoms of Mast Cell Activation Syndrome
As mentioned above, each and every single system in your body can be affected by MCAS.
Here is a breakdown of symptoms most commonly associated with each system:
Learning and memory impairment
Shortness of breath (wheezing may be present)
Throat itching and swelling
Blood pressure instability (high blood pressure at start of reaction, low blood pressure at other times)
Malabsorption of nutrients (may present as nutrient deficiencies)
Bone and/or muscle pain
Flushing of the face, neck, and chest
Itching skin (with or without a rash)
Common Triggers of Mast Cell Activation Syndrome
Another frustrating aspect of mast cell activation syndrome is that just about anything in your external or internal environment can be a potential trigger, and these triggers can change over time as the disease progresses.
Below is a list of common triggers:
Alcohol (especially malt-based, fermented drinks)
Fermented soy products
High-histamine foods (grapes, cheese, tomatoes, unpasteurized milk, yogurt)
Pickled foods (pickles, sauerkraut, olives)
Pitted fruits (avocados, cherries, mangoes, peaches, plums)
Preservatives and additives (MSG, food dyes, nitrates, nitrites)
Shellfish (crabs, lobsters, shrimp)
Spices (especially hot spices)
Physical & Environmental Triggers
Animal coats (dog, cat, rabbit, etc.)
Bites from venomous species (insects, snakes, spiders, etc.)
Exposure to sun
Mold and mold spores
Shellfish and jellyfish (contact)
Smells from over-ripe foods
Detergent (dish, laundry)
Hair care products
Medications (prescription or over-the-counter)
Testing for Mast Cell Activation Syndrome
Unfortunately, individuals with mast cell activation syndrome can remain unaware of the cause of their symptoms for months, years, or even decades. There are not a lot of diagnostic options available when it comes to this condition, and, oftentimes, a doctor who is not familiar with MCAS will simply neglect to test for it.
However, there are a few options available.
A biopsy of the lining of the intestinal tract is one way to test for mast cell activation syndrome. Since most allergens come in through the digestive tract, mast cells will normally reside in this area of the body.
Chromogranin A Test
A serum chromogranin A test may also be done provided it is in the absence of cardiac and renal failure, cancer of the neuroendocrine system, and proton pump inhibitor use.
This test measures the amount of histamine in blood and urine and provides the most accurate results when histamine levels are drawn during an attack.
So, if from what you’ve read here, your body is responding as though you’re allergic to the planet and everything on it, talk with your doctor about getting a referral to an immunologist who can do a work-up for mast cell activation disorder.
Looking for more information on this condition? Check out the resources below.