MCAS is a condition in which chemicals called mast cell mediators are released too frequently or in excess, and/or in response to triggers that are not usually considered harmful (such as foods and chemicals).
This can lead to a wide range of symptoms, mainly allergic, that affect multiple parts of the body.
Mast cells are cells that are involved in the body's immune system and help fight infections.
In the case of MCAS, these cells are activated too quickly and, among other things, release too much histamine.
In short, instead of preventing you from getting sick, they are the ones making you sick.
MCAS
Mast Cell Activation Syndrome
Symptoms
Symptoms vary from person to person and range from rash, irritation, headache, muscle pain, fatigue, runny or stuffy nose to diarrhea, nausea, vomiting, bloating, abdominal pain, cognitive dysfunction and blood pressure instability.
Shortness of breath and chest pain may also occur, as well as muscle pain, faintness, uterine cramps or bleeding.
In early MCAS, spots of rash appear on the body that disappear almost spontaneously and can be extremely itchy. With an anti-histamine the itching disappears but the rash continues to come and go.
MCAS can strongly affect the following body categories:
Nervous system (brain and nerves).
Respiratory system (lungs and airways).
Cardiovascular system (heart and blood vessels).
Digestive system (gastrointestinal tract).
Triggers
Triggers and symptoms of MCAS vary widely from person to person.
Examples of these triggers can include smells, exercise, stress and temperature changes.
MCAS symptoms can come and go and can often change over time in the same person.
This can make it difficult to identify specific triggers, and the number of triggers and severity of symptoms may continue to increase as the condition progresses.
More research is needed to understand MCAS.
Sometimes the condition runs in family groups, suggesting there may be genetic causes of MCAS.
Possible triggers may include:
Heat, cold or sudden changes in temperature
Stress: emotional, physical, including pain, or environmental factors (i.e. weather changes, pollution, pollen, pet dander,..)
Activities and sports
Fatigue
Food or drink, including alcohol
Drugs (opioids, NSAIDs, antibiotics and some local anesthetics) and contrast dyes
Natural fragrances, chemical fragrances, perfumes and fragrances
Poison (bee, wasp, mixed wasps, spiders, fire ants, jellyfish, snakes, biting insects such as flies, mosquitoes and fleas,..)
Infections (viral, bacterial or fungal)
Mechanical irritation, friction, vibration
Sun/sunlight
Anaphylactic shock
People with MCAS are at increased risk for an anaphylactic reaction after experiencing a trigger.
Anaphylaxis is a potentially life-threatening allergic reaction, with symptoms developing rapidly and it is important to be aware of the following symptoms:
Respiratory tract: look for a persistent cough, swollen tongue or lips and difficulty swallowing.
Breathing: Watch for difficulty breathing and wheezing.
Blood circulation/consciousness: look for reduced blood pressure, confusion and sudden collapse.
Pre-loaded epinephrine auto-injectors, better known as EpiPens, are prescribed for immediate treatment of anaphylaxis.
If you are at risk for anaphylaxis, you should carry the auto-injector with you at all times and use the EpiPen as soon as symptoms of anaphylaxis occur.
Always call an ambulance immediately after the injection, even if there is a drastic improvement to go to the ER for a check.
(For patients with Addison's disease, this may not help enough or not at all and an emergency injection with 100mg Solu Cortef is necessary!)
Diagnose and treatment
The specialized doctor who is usually visited for examination/diagnosis for MCAS is an immunologist.
MCAS can be very difficult to diagnose and may ultimately take years before the diagnosis can be made.
Doctors almost often overlook the condition, provided MCAS has only recently been discovered.
Multiple tests may follow and may not give the expected result due to the dependence on the intensity of the symptoms at that time, or whether the complaints have subsided after a possible flare-up.
MCAS can suddenly increase in symptoms due to certain triggers; both internal and external circumstances that is seen as a flare-up or attack.
So it is difficult to diagnose because there is no consensus on the testing itself and there are many false negatives as an outcome.
Testing is usually a combination of Trytase (blood test) and a 24-hour urine to look for methylhistamine and pdg2.
Some doctors will make a clinical diagnosis based on the response to the treatment given.
The most commonly prescribed medications to treat MCAS are antihistamine medications and possibly mast cell stabilizers.
Treatments vary per person and which type of MCAS is involved (there are four stages of treatment intensity).
It is important for yourself to keep a diary in which you keep track of the date, time and nature of complaints so that this can be discussed with the doctor.
Don't forget to write down what you ate before or what activity you did, as well as what products you used (detergent, soap, perfume, etc.).
Pictures of rashes can also be taken.
MCAS and co-existing conditions
MCAS is often a condition that arises from another co-related condition such as POTS, EDS and type 2 diabetes, so these people are at increased risk for developing MCAS.
The relationship between MCAS and many of these co-related conditions has yet to be fully understood and more research is needed.
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Go to the page Literature to read more about MCAS in detail.