#1. Never underestimate your mast cells
Everyone has mast cells. Mast cells are part of our immunes systems; they help keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.
However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.
#2. Do not ignore or argue with your mast cells
You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.
If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!
#3. When in doubt try Benadryl*
*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor.
BENADRYL IS MAGIC.
Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.
Vomiting, dizziness, IBS – Benadryl!
Muscle pain, bone pain, migraine – Benadryl!
Rage, anxiety, doom – yes, can you believe it?! Benadryl!
Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.
Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. However, Benadryl can be incredibly helpful in understanding mast cell disease.