Explosive Reactions with Mast Cell Activation Syndrome
When I drink alcohol or feel strong emotions, I get bright red blotches on my chest and neck. These blotches spread and merge to consume my entire face, neck, and chest in a bright scarlet flush. Here is a picture of me after two glasses of red wine, doing my best Tom Haverford impression with a tiny espresso cup.
Am I allergic to emotions?
I first noticed this phenomenon in grad school. I was in my hotel room practicing my talk for the American Physical Society’s March Meeting, where I would soon present the background and findings from my very first published work. Looking up, I caught a glimpse of myself on the wall mirror and was alarmed to see crimson splotches spreading across my chest. I assumed I must be having an allergic reaction to something in the hotel. I took an extra antihistamine and kept on preparing. Long, ago, I had accepted that my body was “weird.” I was more or less allergic to everything, outdoor and indoor, though I had no satisfying explanation for why.
However, I started noticing this flushing more often– when speaking up in class, having a contentious conversation with someone about equity and diversity in physics, or talking excitedly about something I am passionate about (like potatoes). It seemed like any emotion could trigger it, anger, nervousness, fear, passion, excitement. The feelings didn’t even have to be particularly intense. Was I allergic to emotions now too?
Some quick googling revealed that a number of conditions can cause flushing with emotions and assured me it was relatively common and nothing to worry about. Whenever I brought the subject up with a doctor, they immediately brushed it off as nothing. That put my mind at ease, but I noticed that antihistamines helped reduce it, so there was a part of me that still always wanted a more satisfying answer.
Red Wine Woes
I also started to experience similar flushing when I drank alcohol, particularly red wine. With alcohol, the flushing was also accompanied by a stuffy nose. This was especially frustrating because after a glass of wine or a couple fingers of scotch, my sense of taste became deadened. I started taking extra antihistamines and decongestants before drinking which helped, but I was very confused. Was I allergic to alcohol?
Google yielded the most likely conclusion was that I had alcohol intolerance, which essentially means your body can’t properly break down alcohol. I wasn’t aware of this running in my family, but my family is also rife with alcoholics, so I don’t know that most would have been put off by a bit of redness and stuffy nose. As a result of the alcoholism, my parents don’t drink, so I couldn’t turn to them for better understanding.
Still, antihistamines helped! This doesn’t make sense if the root cause was alcohol intolerance. Something else must be going on! But I ultimately had to just shrug, add one more item to the list of Weird Things About My Body, and move on.
Breakthrough: Mast Cell Activation Syndrome
Ten years later, I was diagnosed with Hypermobillity Spectrum Disorders, on the verge of the criteria for the hypermobile type of Ehlers-Danlos Syndrome (hEDS). My doctor sent me some links to resources so I could learn more about hEDS, one of which was the EDS GP Toolkit. [I have compiled other resources she linked me to in Additional Resources.]
I clicked on the links for two of the most commonly associated disorders with hEDS, postural tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). The list of symptoms in Clinical Manifestations of Mast Cell Activation Syndrome from Understanding hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder by Claire Smith caught my eye. All of the following symptoms applied to me:
- Easy flushing from the chest upwards (triggered by certain foods, heat, stress etc)
- Dermatographia (ability to write on the skin with alight scratch that turns red in a minute)
- Chronic fatigue
- Eyes that feel gritty, sore, watery, or have difficulty focusing
- Infections (bronchitis, rhinitis, and conjunctivitis)
- GI pain, bloating, cramping, gas, abdominal pain, astroesophageal reflux
- Food and drug allergies or sensitivities (may be negative on IgE test but you still react, often
- increasing)
- Sensitivity or allergy to alcohol, especially red wine
- Rashes (with or without itching)
- Muscle pain
- Itching
- Wheezing, coughing, sudden congestion or sneezing, difficulty breathing
- Nighttime waking
- Anxiety and panic attacks
As you can see, this list goes well beyond the flushing from alcohol and emotions. Mast Cell Activation Syndrome presented a way to connect these two weird things, as well as a host of other seemingly random symptoms. A couple of years ago, I started getting frequent heartburn and acid reflux, but I’d chalked it up to the downside of crossing into my 30’s. I get random rashes that usually resolve within a day, but I have trouble identifying triggers. When I stop taking antihistamines, I get unbearable full body itching (pruritis), and my skin erupts in red blotches at the slightest touch (in my case this may be worse since I take cetirizine, FYI). Any individual symptom could have a range of explanations, but I was finally seeing them pieced together with one explanation.
What is MCAS?
Mast cells are a part of your immune system and are located throughout the connective tissues in your body. They serve a variety of functions and are an important part of your immune system response. Some of these are helpful, like responding to bacteria and parasites, and some are less helpful, like turning you into a weepy, snotty mess during ragweed season. The latter is an allergic response, where your mast cells release a mediator in response to something you have an allergy to, which your immune system interprets as a threat.
In people with MCAS, mast cells release these mediators too frequently or abundantly, seemingly at random. The mast cell reaction may be triggered by things you do not have an actual allergy to. Red wine is a common trigger because it is high in histamines, which is a mast cell mediator. I’ve added a list of links at the bottom of this post with more thorough explanations, and I’ve embedded many of these resources in the text of this post.
Mast Cell Explosions
In an article in the New England Journal of Medicine (Mast Cells, Mastocytosis, and Related Disorders Cells), a group of researchers collected a real-time image of a mast cell activating to stimuli. I find this video both horrifying and fascinating, but I love the visceral imaging of what is happening on a microscopic level when my immune system goes haywire and I look like a splotchy mess because I wanted an Old Fashioned.
Watching this video makes me think of what it looks and feels like to have dermotographia, which is the ability to write on the skin with a light scratch. (It also reminded me a lot of images of solar flares, hence the featured image). When I run a fingernail down my arm, within a few seconds the skin along the line raises up, and after about a minute turns a light red. When I am not on antihistamines, it blooms dramatically into thick red welts.
I took some pictures to illustrate this directly. On the left below is my arm below, and the picture on the right shows my arm about a minute after scratching. I tried to form an “H” and “P” for Hypermobile Physicist, as well as drawing one long line down my arm. The red lines usually fade away within a few hours after that.
I am fortunate that my MCAS symptoms are relatively mild. I don’t get a strong reaction to most foods, and I have never had a life-threatening anaphylactic reaction. For some, the disorder can be so severe that they have to significantly alter their lifestyle to avoid an abundance of triggers, which can cause severe illness. Triggers can include any product that you touch or ingest, including additives that are common in a variety of medications, any foods that are high in histamines, and even temperature changes from showering.
MCAS Treatment
My MCAS is recent, but I’ve been using the most common treatment for most of my life– antihistamines. I take three different types of antihistamines daily (a combo of inhaled and oral). From researching MCAS, I have learned that there are two different types of antihistamines. What I think of as antihistamines (Benadryl, Claritin, etc.) are actually a sub-type called H1 histamines, which affect the nose. But there is another class, called H2 antihistamines, which affect the stomach, like Pepcid and Zantac, which I also take as needed.
If you think you might have MCAS, you should definitely talk to your doctor because there is apparently a wide world of other established and emerging treatments. I have just starting trying mast cell stabilizers, which work differently than antihistamines.
Mast cell stabilizers come in many forms, and I am trying the oral form. Twice a day, in the morning and afternoon, I dump four ampoules of Cromolyn into a Hydro Flask and fill it with water. I sip on it throughout the day, and it is supposed to help inhibit the activation of mast cells. So far I haven’t noticed any life-changing improvements, but I am flushing less dramatically and having less heartburn.
My doctor says there are a variety of other treatments to try, so my journey is just beginning. After resigning myself for so long to just living with these explosive, disruptive mast cell reactions, I am excited that there is hope for improvement.
There is still a lot of research that needs to be done to improve treatments and possibly find a cure. While MCAS is often described as a rare disease, it is becoming more widely recognized and diagnosed. By some estimates, it may be as prevalent as 14-17% of the population. Statistically, that means in a room of fifty people, as many as nine of those people may have the disorder. Hopefully, in ten years I can update this post with a host of new learnings. Until then, I’ve added some links below to learn more if you are interested.
More information about MCAS
What is Mast Cell Activation Syndrome?
Mast Cell: A Multi-Functional Master Cell
Characterization of Mast Cell Activation Syndrome
Mast cell activation syndrome and hEDS/HSD
Mast Cells, Mastocytosis, and Related Disorders Cells (this is behind a paywall but you can get one free article)
Symptoms and Triggers of Mast Cell Activation
Disclaimer: No content in this post is intended as medical advice. If you are experiencing an injury that relates to the topics discussed, please consult with your health professional(s).
