The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I personally do not think the alison vickery website has accurate info re: MCAS and some of her diet recommendations are things that are not low histamine and would have probably killed me if I'd eaten them back in 2015.

    The best food/diet website I have ever found for MCAS is the "SIGHI" diet from Switzerland which has everything translated into English (and other languages). I no longer have any food restrictions but I followed the SIGHI diet religiously for about 1.5 yrs.

    I actually also have an MCAS specialist and am happy to give his name by PM although he remains closed to new patients at present.

    Luckily I only went to the ER once (when I was admitted to the hospital for a week by Dr. K) b/c I had reached the point of becoming allergic to all food but water back in 2015. I have an EpiPen but have never had to use it b/c back at that time, my rescue med, Atarax, worked so well for me. Without the Atarax, there were a few episodes that I think would have progressed to needing Epi.
     
  2. ebethc

    ebethc Senior Member

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    thanks for the suggestion
     
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  3. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    That is very helpful, :thumbsup:

    Swiss Interest Group Histamine Intolerance (SIGHI)
     
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  4. jimells

    jimells Senior Member

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    Here is the document nanonug linked to at the beginning of the thread:

    Systemic Mast Cell Disease: An Update - L. Afrin, M.D.
     

    Attached Files:

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  5. Learner1

    Learner1 Professional Patient

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    Thanks - can you try uploading again? I'm getting an error message where index.pho can't be opened on these files.
     
  6. jimells

    jimells Senior Member

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    All three files opened for me. Maybe they only work on Linux? The original file was 26 MB, so I had to split it up, then try to upload again, and again, and again, because although the upload limit is supposed to be 10 MB, the upload dies even when Linux reports the file size as 9.3 MB. Grrrrr.
     
  7. Learner1

    Learner1 Professional Patient

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    That could be. Ill try from my iPad or Windows, I guess, as Android can't read them.

    Thanks for your persistence!
     
  8. ahmo

    ahmo Senior Member

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    @redo I'm fortunate that my mast cell issues are relatively mild. I'm careful to eat non-histaminic. I take royal jelly daily for MC, and for flares take more, plus mangosteen. Rutin generally is enough for me if I have a histamine event. Also footbaths w/ Vit C + Ca, but I haven't needed that for several years. If you look for rutin, make sure it's a non-citrus form. good luck.
     
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