Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Who are the recommended MCAS specialists in the UK?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Fogbuster, Aug 9, 2017.

  1. Fogbuster

    Fogbuster Senior Member

    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.

    Last edited: Aug 9, 2017
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  2. trishrhymes

    trishrhymes Senior Member

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  3. justy

    justy Donate Advocate Demonstrate

    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.
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