First, it should be stated that MCAS has little to do with a release of tryptase; in fact, a blood test showing little to no tryptase release during an MCAS reaction is further proof of the condition. However, antihistamines are still helpful as you are more likely to have a reaction with the more histamine that you have ingested or been exposed to. The take-away here is that MCAS does not create allergies in the typical sense of the word. Long science short, “normal” allergies involve histamine and tryptase, whereas MCAS reactions are literally the mast cells activating. Different mechanics, same reaction.
This means that while we are more likely to react to high-histamine allergens (nuts, shellfish, citrus, alcohol, etc), histamine levels are merely a guide. It is extremely common for us to react to things only some of the time; with a “normal” allergy, you would always react to it, and the reaction would be in proportion to the exposure. I also find that during flares I can tolerate items which I am anaphylactic to when not in a flare. Thus, histamine levels do not necessarily determine whether you will react, how often you will react, or how the reactions change in flares.
Secondly, it is important to know the different types of mast cells. The two primary types (which make up almost all mast cells) are skin/soft tissue and mucosal. The former is almost entirely in your skin, with some in your connective tissue and around your blood vessels (monitoring vasodilation). The latter is in your lungs and GI tract. This is a big reason as to why reactions can vary drastically, and why you can have severe GI/lung reactions without any skin reactions, or vice versa. You may find it easier to identify triggers if you split the symptoms into these two categories.
Finally, it is crucial to remember that severe reactions are not always immediate. Personally, it takes 8+ hours for me to have GI reactions, which means I don’t get GI reactions with anaphylaxis. Fabrics also take several hours to cause reactions (in most situations, not just me). Pollen and fungal spores can easily get into your house, meaning you can react to them without even going outside.
Here are some other pointers on identifying what a reaction may look/feel like:
A weird tickle in your throat; this is due to swelling, your throat being swollen enough for the interior sides to touch
Your face looking fatter; this is also swelling, frequently mistaken by others as fat
Flushing; this is when your face turns very red, sometimes purple, with a hot or burning sensation
Sharp GI pain; GI reactions don’t only cause dull cramping, the pain can be sharp and debilitating
Headaches; seemingly inexplicable headaches are a common symptom
Bone pain; this one is a bit horrifying but… your bone marrow can swell. When this happens to me, I get a lot more dislocations than usual. It is an indescribable, excruciating pain that, for me, usually requires opiates
POTS like symptoms; as mast cells are partially responsible for vasodilation, reactions can sometimes feel like a POTS episode
Eyes, nose, throat, and/or ears itching or running; reactions can cause all of these areas to be itchy or runny, frequently mistaken for infections
Your lips randomly being a really weird texture, one you had never felt prior to the beginning of the condition; for me, they feel swollen, slightly numbed, and rough but not in a chapped way. It’s something that is unique to the individual, but immediately noticeable
Biting the sides of your tongue; reactions frequently cause my tongue to swell and get cut on or bit by my teeth
Difficulty swallowing or using your jaw; this is simply due to swelling and muscular issues
Fevers; mast cells are also partially responsible for the healing process and fighting germs, meaning reactions can cause fevers
Fatigue; this is a very impactful one for me, and it always hits me in an instant, never gradually. It’s important to note that fatigue is more than just being tired—it’s being so tired that you can/do fall asleep in the middle of a task, or even while standing
A muscular spasm in your chest; this can be caused by either lung or cardiovascular symptoms. For me it feels like the first half of a palpitation, without the release. For me it’s a sign that I’m about to have anaphylaxis
As for identifying triggers, most people will recommend a food and symptom journal. As I have such a severe case of MCAS, I can’t record all of my symptoms because I always have multiple symptoms. I have to focus on counting how frequently I have severe GI reactions, take my inhaler, or use an epipen. Instead of an all-encompassing journal, I focus on filtering through a category of items and find things that I’m definitely not reacting severely to. Because my MCAS has resulted in 11 months (and counting) of malnutrition, I have to just deal with the non-life-threatening symptoms. This is not the case with most people, so you don’t have to be as harsh with this as I am.
If you’re at the beginning and just lost in the possibilities of what could be causing your reactions, here are some things to try:
Cut out herbs and spices; the spicier they are, the more you react; internet suggestions for what herbs will help with allergies are basically useless and usually make things worse
Cut down as much sugar as you can; the higher your blood sugar, the more you will react
Sort and test clothes/linens by material; remember it can take several hours, sometimes days, for cloth to cause reactions. It requires cutting out specific materials for a week or more to identify whether it was causing the problem
Always wash exposed skin and change the outermost layer of clothes as soon as you get home during pollen seasons
After washing your laundry, put it through a rinse cycle to wash out the left over scents/chemicals
Buy pure glycerine; this is soap but without additives. It comes in either solid or liquid form, so you can use it to substitute any glycerine-based cleaning products in your house. This includes dish soap, hand soap, and even shampoo
Use your nose! If the smell of something has recently began to disgust you or change to be unusually unpleasant, get rid of it. I first identified this (surprisingly common) power last spring when something in my kitchen smelled rotten. Except, there hadn’t been any produce, dairy, or meat in the kitchen for a while. After rooting through cupboards and boxes, I finally opened a spice jar and realised what I was smelling was my spices. They hadn’t gone bad; it was my body telling me not to eat it
If you can, never eat premade meals; as explained in my MCAS food basics post, they rarely list all of the preservatives and “flavourings.” Plus, as we all know, trace amounts and even straight up lies from staff are extremely common
If you can, dust and vacuum regularly (or hire someone else to). Even if you’re not allergic to dust, regular cleaning helps remove small particles of things you used to use that you now react to
Good luck!
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