What is Mast Cell Activation Syndrome?
Mast cell activation syndrome (MCAS) is a relatively new diagnosis. It is not a truly new disease, but doctors have only begun to recognize it in the past 10 years. Mast cells are types of blood cells that play a role in the immune system. They exist throughout the body and form the body’s first defense against foreign bodies and injuries. They release histamine and other chemical mediators when they encounter a perceived threat. Normally, these mediators help heal the body. In a person with MCAS, however, the body releases these mediators inappropriately which then has a negative effect on the body. There are a variety of triggers, but the most common are foods (both “healthy” and “unhealthy”, high or low in histamine), exercise, chemicals (natural odors, chemical odors, cleansers), fragrances and stress. Some people with MCAS are able to more easily identify their triggers, and others still don’t know all of theirs. Triggers can also change over time, often waxing and waning in severity, sometimes with no known cause. Like all disorders, MCAS covers an array of symptoms and severities, thus creating a spectrum. What these symptoms boil down to is overly sensitive mast cells (“About MCAS”).
Physicians didn’t truly identify MCAS until 2007. Unlike Mastocytosis, MCAS does not increase the number of total mast cells; it only increases their sensitivity. Some patients are only mildly inconvenienced by their symptoms while others have debilitating and life-threatening experiences. There are times when only a few parts of the body are affected, and times when symptoms cover a wide array of body systems. The onset of MCAS is often sudden, and it affects both children and adults. Patients experience a multitude of seemingly unconnected symptoms that mimic other diseases. MCAS doesn’t present with obvious clinical signs, and often hides in plain sight (“Symptoms and Triggers of Mast Cell Activation”). It is the sort of disorder that usually no one hears of until they have it or believe they have it. When telling others about it, MCAS seems like a made-up disease, because, for example, onions and cigarette smoke could trigger a potentially life-threatening illness.
When I was first diagnosed with MCAS, I honestly didn’t worry much about it. I knew another young woman who had it, and she would go into anaphylaxis at the drop of a hat. As I had never had that problem, I thought perhaps the specialist had it all wrong. I certainly had chemical sensitivities, but nothing that had greatly impacted my life. I simply had to be selective about the beauty products I purchased and avoid cigarette smoke. I was so busy playing whack-a-mole with my other disorders that I didn’t do my usual research. If I had, I would have realized that I needed to take my MCAS much more seriously. Unfortunately, because I was passive, my MCAS symptoms became worse than ever.
It began as both upper and lower GI issues. Eating anything caused intolerable pain, and I had uncontrollable diarrhea. I couldn’t really get the doctors to do much. They felt the pain was neurological, and that eating more mashed potatoes would help my stomach adjust to being used again. The specialist who diagnosed me with the MCAS initially felt it was an MCAS flare and prescribed cromolyn sodium and a Zyrtec and Zantac combination, but warned it would take 4 or more months for the cromolyn sodium to work. When I told my GI, he all but laughed in my face. I immediately fired him. He wasn’t doing anything for me, and seemed only willing to congratulate me on my massive weight loss. Worse still, he refused to do anything to help with my complete lack of nutrition. I decided to wait it out with the cromolyn and eat whatever I dared in the meantime. A little after 4 months, I was able to eat again without agonizing pain.
But my MCAS journey was never easy. At first, I could eat anything I wanted, but then I started having anaphylaxis. Luckily, I didn’t have swelling of the mouth or throat, but I would become aggressively itchy everywhere, my eyes, mouth, throat, and nasal passages would itch and burn, breathing would become difficult, my heart raced, my blood pressure plummeted and I would become faint and nauseous. I even had diarrhea, flushing, and extreme anxiety. I struggled to figure out what was going on. I soon realized that *this* was MCAS. Hoping for relief, I put myself on a low-histamine diet. When I still had trouble with food, I tried salicylate and oxalate diets. I struggled to find products that I could use to brush my teeth and wash my hair other than baking soda. I struggled to find products I could clean my home with. I found that I could no longer tolerate touching or smelling essential oils, and had to rid my closet of them. When cleaning or coming in contact with chemicals, I have to wear gloves. Years later, I still struggle with food triggers. Sometimes, I can eat more nutritious foods. Other times, without warning, meat and vegetables will render me unable to swallow. Sometimes I can’t even swallow my own saliva for hours afterwards even after taking Benadryl. The severity of my MCAS waxes and wanes, but it is always there, and I am forever thinking of it when I go out. Even when I am at home, I have to be careful. That tomato sauce might smell amazing, but I know if I eat it, I’ll be spitting into a cup like a Mamaw and her spitoon. All I’ll be missing is a rocking chair on the porch.
I am hopeful that at some point I will find a combination of medications that work well and allow me to enjoy life more. MCAS is a difficult illness, both in diagnosis and in treatment. The good news is that with the right team, it is possible. Like with all goals, it is the amount of effort we put into it as well as the effort of those around us. Even in life’s struggles, a good friend or family member is irreplaceable. Together, we will strive for a healthier tomorrow.
“About MCAS.” Mast Cell Action, Jan. 2019, www.mastcellaction.org/about-mcas.
“Symptoms and Triggers of Mast Cell Activation.” The Mastocytosis Society, 2019, https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/.