Managing Mast Cell Activation Syndrome (MCAS) can be one of the most difficult challenges a person can encounter when it comes to health. There is nothing predictable about it. Mast Cell Activation Syndrome is one of the most complex disorders a person can have. Most primary care doctors don’t understand it even if they happen to know what it is. Unfortunately, right now even the leading doctors in the field can not agree on a definition let alone a clear way to diagnosis the disorder.
What is Mast Cell Activation Syndrome
Mast cell activation syndrome (MCAS) is one type of mast cell activation disorder (MCAD), and is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. It is a condition with signs and symptoms involving the skin, gastrointestinal, cardiovascular, respiratory, and neurologic systems.
What are Mast Cells
Mast Cells by definition are a cell filled with basophil granules, found in numbers in connective tissue that release histamine and other substances during inflammatory and allergic reactions. Mast cells are involved in the regulation of variety of physiological functions, including vasodilation, angiogenesis, bacterial, and parasite elimination. They play an important protective role as well, being intimately involved in wound healing, angiogenesis, immune tolerance, defense against pathogens, and blood–brain barrier function. Most common signs and symptoms are flushing, itching, unexplained systemic hypotension, unexplained gastrointestinal disturbances, and unexplained fluctuations in blood pressure and elevated heart rate.
Mast Cells contribute to homeostasis in the immune system. They serve as a first line of defense against antigens entering the body due to their location in the skin and mucosa of the digestive and respiratory tract. All of which are a form of connective tissue.
Because they do so much and are involved in so many processes they can be a tricky thing to pin down when it comes to overactivity or too many of them.
Why Do Mast Cells Misbehave?
Mast Cells are found concentrated in locations such as mucosal and endothelial surfaces where tissues interface with the external environment. They are found in loose connective tissue throughout the body, in virtually every organ. Mast Cells can stick to the extracellular matrix in collagen, which in turn alters their behavior. Mast Cells are triggered by things the body interprets as potentially harmful. The Mast Cells then release histamine and other molecules into the surrounding tissue to signal a response from the body, which leads to swelling, warmth, and redness. Including hives and or anaphylaxis. Basically causing inflammation. They can also be triggered because the connective tissue they are in is defective causing them to not respond appropriately. Those with connective tissue disorders, like Ehlers-Danlos, have a higher probability of having Mast Cell disorders.
- Defective collagen causing the Mast Cells to stick to them resulting in inappropriate response of the Mast Cells
- Too many Mast Cells causing on over-reaction response
Diagnosis and Treatment of MCAS
An officially tested and confirmed diagnosis can be hard to come by because of the challenge in testing and often the need for multiple tests during an active reaction. For many this just isn’t possible either because of the reaction time response or expense.
Laboratory tests should focus on testing blood and urine samples for chemicals specific to Mast Cells such as the levels of some or all of the following molecules: serum tryptase and chromogranin A, plasma histamine, prostaglandin (PG)D2, and heparin, as well as urinary (random and 24-hr) histamine, N-methylhistamine (NMH), PGD2, 11-b-PGF2a, and leukotriene (LT) E4. The problem is many of the tested molecules do not stay in the body for long or can break down outside the body making testing unreliable. Another option is to take a small sampling from the gut but this is rather invasive and expensive.
Diagnosis can be very frustrating for a patient suffering from MCAS. The severity and frequency of a reaction can vary daily. The first step is to calm and stop the reactions. This is often done with an antihistamine. Low histamine diet and avoidance of triggers. Everyone’s triggers are different to add to the complexity of the disorder. What affects one person may not affect the next.
What I Do
The first and most important thing I did is start journaling what I ate, when and what type of reaction I would have. I started to track everything because anything can cause a reaction. I also started intermittent fasting. This not only allowed my body a break from potential triggers but it limited the amount of time I would be exposed to a food that could trigger a reaction. It basically keeps my bucket from filling too high.
The next thing I did was an elimination diet. I slowly added back foods and monitored my reactions to them. Anything I reacted to went on my avoid list. I no longer eat red meat or pork. Food additives like Carrageenan and MSG are a big NO for me now. I do my best to stay away from processed foods in general and I don’t drink alcohol. I also do my best to make sure food is fresh so I leave the leftovers for my husband.
My doctor recommended I start taking an antihistamine daily, up to 4x a day as needed. I was hesitant to take it everyday but I find it best to take it at least once a day because I never know what I might get exposed to that I wasn’t expecting. I also found by tracking everything that the CBD I am using is helping reduce the number and severity of the reactions I am having.
The fact is, this is a difficult disorder to have. It is limiting and frustrating. So many things in your life and those around you have to change. And change is difficult especially when it isn’t one you wanted to make. Once you get it under control though you will start to enjoy things again. I have found the restrictions to be easier to adjust to than I thought they would be. And I feel better doing it all so in turn I enjoy everything so much more.