Who are the recommended MCAS specialists in the UK?

[Fogbuster]

I have a suspected case of MCAS. I don't have anaphylaxis, bad skin issues or chronic fatigue. But I have a laundry list of allergy like symptoms eg sinusitis, phlegmy throat, tremor, head pressure, cog impairment.

I strongly react to the worst histamine liberators etc, eg smoked foods, fermented foods/dairy, beer/wine, pickled, jams, beans, nuts, seafood, spices, high fructose etc etc.

Absolutely nothing significant has come up in tests, which is very frustrating. I think I may need a specialist who's seen the whole spectrum of patients, as my histamine, Tryptase and I'm pretty sure 24-hour N-methylhistamine has been checked, and nothings come back.

When I adhere to a low histamine diet I feel slightly less symptomatic and able to function. But the diet is extremely limited.

I'd appreciate any thoughts.

Thanks

 

[trishrhymes]

This patient organisation might be able to help.
https://www.mastcellaction.org/

 

[justy]

Hi, i see Dr Croom at Leicester Spire - she comes highly recommended and will make a clinical diagnosis or rule out MCAS if she thinks its something else. I've so far only seen her once. If you ring for an apt you need to say its for new MCAS as her appts are one hour for these.

Other specialists are available - I suggest joining Mast Cell activation discussion group (uk only) on Facebook - very friendly and small group of knowledgeable patients - they have a file of all specialists in the UK.