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I've Been Dealing With A Lot Of Brain Fog Lately And It Can Make It Really Hard To Know What To Do Next. So These Links Are Going To Come In - Blog Posts
Thank you so much for all of this! I think being tested to see if I have developed allergies is a good idea. I live in rural Wales so there aren't any dermatologists around, but I could try asking my GP - hopefully I'll luck out and they'll listen!
Hello there - I had a question which I think(?) you might be able to help with. Or at least point me in the direction of more information.
I have a few chronic illnesses and disabilities and as such there's many gremlins I deal with. One thing that crops up a lot are comorbidities between my conditions.
I'm trying to be more vigilant with regards to my health - as a child there were many, many missed opportunities to get my symptoms seen to by a doctor (all squandered due to my parents nor believing me about my symptoms).
Anyway, I wanted to ask about MCAS and if you know it's possible to have it but not realise it?
I've had a few incidents like this, but mostly forgot them or ignored them. But yesterday I ate some basil from my windowsill plant and I had what can only be described as an allergic reaction. I'm not allergic to any foods (as far as I know) but I've eaten from this exact plant before and been fine. I have mint growing next to it which I also ate and it caused the same reaction. Again, I've eaten from this exact plant before. It was like my mouth was burning or stinging and the leaves felt, spicy? In my mouth. I'm not sure how to describe it but I hope you know what I mean. Today I ate from the exact same plants and had no reaction whatsoever.
I've definitely had similar things happen before- but events like yesterday are few and far between. But utterly confounding when they do happen. I have urticaria (diagnosed since age 18) which I suspect is relevant, somehow.
I'm starting to wonder if a lot of my symptoms I've written off have actually been MCAS. But I'm not sure. Do you have any advice around talking to a doctor about this or if I have a leg to stand on so to speak?
Sending my best wishes!
Hey friend, sorry to hear you've been dealing with some neglect.
And considering MCAS was only really recognized as a condition in the last 15 years, it's absolutely possible to have it and not know until symptoms get worse. I was experiencing anaphylactoid reactions my whole childhood, but because I tested negative on IgE tests (I still do), it was dismissed as anxiety right up until I hit my 30s and I experienced my first episode of full-blown idiopathic anaphylaxis.
(Note: anaphylaxis is not a requirement for diagnosis, and not everyone experiences it.)
You should discuss your inconsistent allergies with your doctor or allergist. I would also advise pursuing allergen testing, as new allergens can develop at any time, even if you don't have mast cell instability.
If you suspect some form of mast cell instability may be the root cause of your issues, I'd suggest checking out The Mast Cell Disease Society. (Their website is in the process of being updated, still. But they have good resources there.)
Their signs and symptoms (and triggers) page has recently been updated and is fairly concise:
If any of that rings a bell, it might be worth bringing up with your allergist, but fair warning, not everyone is receptive to the idea of mast cell disorders outside of mastocytosis. (And even then some doctors gaslight their patients to hell and back.)
If you do find yourself in this situation, try joining a couple of support groups to see if there are any MCAS aware doctors in your area, or alternatively, try the TMS physician finder tool:
Sorry if it seems like I'm just throwing a lot of links at you, but they are very useful links and I'm not at my best right now to explain things.
I hope this is helpful and if I missed something, please let me know.
I wish you luck in remedying your chronic health issues <3