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MCAS - Any advice

27 replies

HateLongCovid · 29/04/2023 16:00

My daughter since catching covid in 2022 developed reactions to a lot of foods. When she caught covid again this year the allergic reactions have really ramped up. There are only a couple of foods she can safely eat and has started to react to prescribed medicine. We believe she has MCAS mast cell activation syndrome. Anyone else struggling with this?
Any advice, Doctor recommendations would be greatly appreciated . BTW we are in the UK.

OP posts:
CormorantStrikesBack · 01/12/2023 17:10

I have mcas. Lots of bladder issues. I'm under the LUTS clinic at the Whittington hospital, you can get referred via nhs but you need a urologist to refer you not just a GP now I think.

Low histamine diet and anti histamines have helped me. Someone at work has it and says she takes "mast cell stabilisers", no idea what she means. Maybe just anti histamines!

WitheringTights000 · 01/12/2023 20:26

@CormorantStrikesBack - I am under the care of prof khullar for this.

He diagnosed me with MCAS. He has me on sodium cromogolate for it which is a mast cell stabiliser.

He gave me the mast cell diet sheet and it is exhaustive. It seems like practically everything has histamine in it!

He said the whole point of the mast cell stabilisers is to reduce your sensitivity to food as it don't know how anyone could do that diet long term!

What do you have for breakfast, lunch, dinner etc?

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