1. Guest, the 'News in Brief' for the week beginning 3rd May 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Mast Cell Activation Syndrome – What it Is and Isn’t, 2020, Hamilton & Scarlata

Discussion in 'Immune: Autoimmune and Mast Cell Disorders' started by Dolphin, Jun 16, 2020.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    2,942
    Likes Received:
    16,378
    Free full text:
    https://med.virginia.edu/ginutritio...6/Mast-Cell-Activation-Syndrome-June-2020.pdf

    I haven't read this and have no idea whether it is good or not; it simply came up in a Google Scholar search result update I get for "chronic Fatigue syndrome"
     
    Lidia, Kitty, Yessica and 3 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    6,172
    Likes Received:
    50,131
    Location:
    Canada
    It's not exactly hard to outpace people walking in circles.

    But the therapeutic role of nutrition is not encouraging. If there's another thing that is fraught with ambiguous and unclear science it's nutrition. And very hard for a person to do on their own, even though it's the only way.
     
    JemPD, Milo, Lidia and 10 others like this.
  3. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    896
    Likes Received:
    4,923
    Are you telling me it's not true that if I eat x hazelnuts a day I can expect to live x years longer (up to sixteen years)?! Nutritional studies are super clear that this is the case! Just don't ask too many questions or think too much about how those results came to be :whistle:

    Okay, so I don't remember the hazelnut example exactly, but it's something to that effect. I agree, there are lots of ambiguous and unclear science in nutrition.
     
    Last edited: Jun 17, 2020
    JemPD, Hutan, MarcNotMark and 9 others like this.
  4. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    895
    Likes Received:
    6,129
    This is a document targeted for GI specialists and covers where MCAS can cause food intolerance and could be a cause of IBS
    It's a start. It focuses on food intolerance testing, nutritional health, and histamine. It really misses the chance to expand on the use of Cromolyn Sodium to control IBS in the GI system caused by idiopathic MCAS which would be beneficial to many GI specialists.

    Here is the context for Chronic Fatigue Syndrome
    Though I don't see why you can't have both i-MCAS and one of the others. Too little is known about why MCAS develops.

    I did the food intolerance testing described in this document years ago and reacted to more than 1/3 of food types at the time. Everyone I showed the results to shrugged their shoulders and didn't really know what to do except the usual "nutritional" diets which did nothing.
     
    Frankie, Kitty, Yessica and 2 others like this.
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,040
    Likes Received:
    49,620
    Location:
    UK
     
    Yessica, Kitty and wigglethemouse like this.
  6. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    245
    Likes Received:
    2,111
    I have used cromolyn sodium as an inhaler for ME/CFS symptoms. This was before I knew it was ME/CFS (I had gradual onset). The GP prescribed it for the tight chest and breathlessness I was experiencing. It made no difference.

    I take sodium chromoglycate tablets when I get a stomach flare up and they work (prescribed by Dr Bansal).
     
    Last edited: Jul 27, 2020
    Binkie4, Yessica, Trish and 2 others like this.
  7. OverTheHills

    OverTheHills Senior Member (Voting Rights)

    Messages:
    125
    Likes Received:
    976
    Location:
    NZ to UK
    I use the inhaler and find it makes a definite difference to my functionality during winter time (I've started and stopped it a few times to check, though obviously this is not 'science') . With the inhaler I have much less PEM and a little more time active/out of bed and no discomfort in my chest. I'm not so sure about the tablets for me.

    I have always had a really strong seasonal pattern to my symptoms, which baffles immunologists and ME specialists alike. So as of recently I have presumed MCAS along with MCS, IBS, POTS, conventional allergies and migraines, and ME. Which really amounts to a lot of doctors saying,"yes, you do have something wrong with you, but we have very little idea what it is" as far as I can see.

    I am very concerned about my access to this medication in future with the inhaler being discontinued in NZ as well. Any advice or tips welcome ( I plan to make my 3rd attempt to move back to England next year)
     
  8. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    895
    Likes Received:
    6,129
    I too have a very strong seasonal pattern. Around early March at the same time as the first leaves come on trees I crash bad, five years in a row. This year the crash lasted two months. I also have a shorter crash when leaves start coming off the trees in the Autumn.

    Can you describe your seasonal pattern @OverTheHills ?
    I've read in the MCAS groups on Facebook that some folks use a Nebulizer together with a vial of cromolyn sodium.

    I tried Nasalcrom which is a solution you squirt up your nose and it seemed to help but my dizziness got worse. Is that available in NZ?
     
    Yessica likes this.

Share This Page