Mast Cell Disorders?: I’m following up with my... - Behçet's UK

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Mast Cell Disorders?


I’m following up with my allergist to go over results in a week or two, but as of right now it’s clear he’s leaning towards some sort of mast cell disorder. It isn’t shocking to me given the symptoms I’ve had I’m just curious if anyone else had been formally diagnosed? It would be okay if I could avoid a given allergen, but I’ve literally woken up from my sleep with a swollen tongue and lips! Even my eyes had started to get in on the fun!

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I m interested to her what happens as I have multiple allergies, worst being allergic to the cold.. Come out in hives. Lips always swelling and blistering.


Good luck with this and once diagnosed hope you can find the triggers and alleviate some of the symptoms. Let us know how you get on.

I was diagnosed with “chronic idiopathic urticaria,” but I’m not fully convinced. Apparently my labs were all normal, which resulted in the diagnosis. My issue is that when I get reactions, one of my main symptoms is lip and tongue swelling, along with numbness in the mouth and even tickling in my throat. Sometimes I get hives, but usually it’s just intense flushing. My allergist seemed knowledgeable, and I’ve never had anaphylaxis, but I still worry and wonder.

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