Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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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

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    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
     
    Last edited: Aug 9, 2017
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  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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  3. justy

    justy Donate Advocate Demonstrate

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    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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