Coffee is high in histamine, and often mold, too. I react dramatically poorly to coffee (which makes me so sad!). Many people with MCAS have traditional allergy-like responses to triggers, such as rashes, hives, fevers, congestion, breathing issues, etc. but others have less specific symptoms like headaches, brain fog, anxiety, diarrhea, abdominal pain, nausea, POTS, and dizziness. It took me a long time to figure out it was happening to me because I didn't have any skin or respiratory issues. But then I read about someone not being able to tolerate some treatments because of MCAS, and I looked into it further. As soon as I cut all the fermented foods and other high-histamine things I was eating out of my diet, I never had brain fog again! And with quercetin I have been able to tolerate a wider variety of herbs and other ingested treatment.
A lot of people know they have MCAS because they trace their symptoms to high-histamine triggers. Triggers are not just foods but can include airborne allergens, hot or cold temperatures, abrasive fabrics, exertion, and other things. Some people test for tryptase levels when they are flaring, but this means having a blood draw within 12 hours of being triggered, so maybe in your case you could schedule a blood draw and then have some coffee a few hours beforehand. There are also various histamine tests but I'm not familiar with them or how useful they are. My LLMD just evaluates people based on symptoms and sees if one of the gentler mast cell stabilizers (herbs, drugs, or nutrients) improves their symptoms.
I also can say that MCAS developed more than a year into being disabled by Lyme. In the early years of my illness, I did not experience MCAS issues regardless of diet and other triggers, or at least they were much milder. So it can develop over time.
Good luck! Sorry you are experiencing such a rotten few days.
Thank you so much for all your knowledge! I really appreciate it. What supplements do you recommend for MCAS? Just the Quercetin or would something like Life Extension Cytokine Suppress work as well?
JovaLyme - Yes I am still taking Jernigan. So far I wouldn't say it has done anything for me. Might switch over to Lymogen and give it a shot.