The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Mast cell activation

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by kel88, Mar 18, 2015.

  1. kel88

    kel88 Senior Member

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    Hi guys!

    Did any of you try Palmitoylethanolamide For mast cell activation?
    I have this because of homo a1298c.

    I always have netelrash also from B12.
    Is this because high histamin because im undermethylated?

    Can i use Pea / Palmitoylethanolamide
    Or better try Ketotifen of H1/H2 blockers?
     
  2. Pea4Pain

    Pea4Pain

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    It is interesting to note that PEA has been explored for mast-cell related disorders since the first work of the Italian neurologist prof. Rita Levi-Montalcini in 1993, and since she discovered that mast cells play a much undervaluated role in many disorders. She found that PEA is a modulator. We have seen many patients with mast cell related disorders getting much better after PEA, but you have to dose higher up sometimes, from 4 times 400 mg to 3 times 2 capsules of 400 mg. And dose at least for 2-3 months, because the entire system needs resetting via a nuclear receptor in the cell-nucleus. This is a metabotropic effect, and thos effects take some time. Happily PEA also has a direct action via a number of cell-membrane receptors, and most people report feeling better within some weeks. Listen to the great Montalcini herself:
     
    Last edited: Jul 10, 2015
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @kel88 I have never heard of Pea and won't even try to spell the longer word? Can you explain in non sciency terms what it is? I am having great results with Ketotefin 200 mg 2x/day plus other MCAS meds but curious to learn what others are doing, too. Thanks in advance!
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    I am so scared to try new things for MCAS anymore. Scared I will even react to them!
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I researched this PEA product last night and it does not seem easy to obtain in the US but it does seem to be common in some other countries not only for mast cells but for chronic pain and now that I cannot take painkillers b/c of MCAS, I wonder if it could help for severe cramps or neck pain?

    I am going to ask my MCAS dr if he has heard of it or ever used it at my appt at the end of July. I have a long list of questions so this one is toward the bottom but hoping to get to ask them all!
     
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  6. Pea4Pain

    Pea4Pain

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    PEA is a natural molecule, present in our body, that brings balance in pathological states of inflammation and pain. It can be dosed quite high without side effects, due to the fact that it is a body-own lipid like compound. It has been tested in many pain and inflammatory conditions and found to be of much use to many patients. See on the website palmitoylethanolamide4pain many articles on this subject, also written for non-meds..
     
  7. Pea4Pain

    Pea4Pain

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    There is an ophtalmologist in the USA prescribing and distributing PeaPure, easy to find if you google fiteyes and palmitoylethanolamide. I have heard from a number of USA patients that they use the compound for glaucoma, prescribed for them by said ophtalmologist, and that is just one indication for this interesting compound.
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    This would be great because I also can't take any kind of pain medication. I was able to take Percocet right after my surgery and now I'm allergic to it. Or, I'm just having a reaction to it in the form of itching.

    The worst part of having MCAS is that I have so many different conditions that I need to treat including horrible pain and I can't even do it because I react to all of these medicines that I need. And that's all of us.

    To react to food is the absolute pits. I feel so sorry for anyone who everything they eat they have a reaction to.


    I ordered Quercetin.
     
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  9. AndyPandy

    AndyPandy Making the most of it

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    I had an appointment with MTHFR Support today and she thinks it is highly likely I have histamine issues and MCAS. Thinking of you @Gingergrrl @Misfit Toy and @justy.

    Need to look into this further. Another research project! Do any of you know of a good starting point for understanding about histamine intolerance and MCAS?
     
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  10. justy

    justy Donate Advocate Demonstrate

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    @AndyPandy

    https://mastcellblog.wordpress.com/ this is a really helpful and easy to understand blog

    also the work of Dr Theorides - there is tons of his stuff on the internet.

    If you have MCAS and not just Histamine intolerance then you may need to use H1 and H2 blockers and a low Histamine diet.

    http://www.mastocytosis.ca/ this is the Canadian Mastocytosis society - it s a great website and has the best Low Histamine food list I have come across.
     
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  11. AndyPandy

    AndyPandy Making the most of it

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  12. Misfit Toy

    Misfit Toy Senior Member

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    It's so weird how this illness works. Years ago, I was able to eat anything although like you, Justy, I would start itching but food allergies/intolerances weren't big then. Nobody ever suggested it. Or, histamine intolerance.

    I still can't get over all of the things I can't eat or meds I can't take.

    I went to a friend's last night and she had a full spread of food. There was only one food I could eat; pineapple. That's it!

    When I'm out, it's hard to go and get something on the fly because it's all junk food and if I go to a friend's, I have to always bring my meal.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    There is a very good blog called "Mast Attack" by Lisa Klimas which really breaks it down and explains things well. She also has a FB group you can join. I am not a member but read it through my husbands page.

    I see an MCAS specialist now (once so far) but follow up in two wks re: all the testing he had me do. I take seven meds to eat and not doing that well right now but hoping he will be able to help me. My lung functioning is very poor which may be related to the severity of my MCAS or may not?

    Not sure if any of this helps but I hope so!
     
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  14. Critterina

    Critterina Senior Member

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    Histamine Intolerance, from what I know about it, has nothing to do with histadelia or mast cell activation, but is a response to dietary histamines. Here is the seminal article: http://ajcn.nutrition.org/content/85/5/1185.long

    My findings regarding the different food lists and supplements online - what is out there is all over the place. I have a list of foods that works for me (PM me and I'll send it). It was a pretty good list before I found the above article and started researching, but when I challenged the differences - foods that I thought I couldn't eat but were low histamine and vice versa - they were right and I was wrong. The Low Histamine Chef cookbook is full of recipes that have enough histamine in them that the whole cookbook is useless to me.

    Big deals other than food: Avoid N-acetyl cysteine (NAC). Avoid contrast media when having imaging done (or elect pretreatment options such as diphenhydramine and prednisone). It's a short list.

    Food big deals: ANYTHING aged, cultured, or fermented. Any animal protein that has been cooked and then refrigerated overnight (my limit is about 12 hours refrigeration). Tomatoes, red or green peppers, eggplant, pumpkin, chayote squash. Cinnamon, cloves, curry, turmeric.

    Also deals, although not as big at least for me: berries and stone fruits. Some people have trouble with citrus, although that seems to be more in the citrus causing the release of histamines from your own cells (more along the MCAS lines) than the dietary histamine intolerance.

    What really helps me: a 72-hour water-only fast is the biggest help. 4R gut rebuilding that I did before the first fast might have been necessary. DAOsin or Histame (diamine oxidase, the enzyme to break down histamine in the gut) helps if I'm already not reacting badly but just reacting a little -when I was bad there was no noticeable improvement from using it. Note that DHist has NAC in it - which is contraindicated for histamine intolerance.

    Grateful that you have hope of slaying the dragon now that it's been named!

    Critterina
     
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  15. AndyPandy

    AndyPandy Making the most of it

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    Thanks for your ideas everyone. I will work my way through the reading.

    @Critterina I think I have a few other dragons yet to be slayed! ;)

    One at a time!
     
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  16. AndyPandy

    AndyPandy Making the most of it

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    @Gingergrrl I hope that specialist can make a big difference for you. Sending you love and encouragement.

    Thanks for taking the time to help me when you are so sick yourself. :heart:
     
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