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Mastocytic enterocolitis

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Dec 20, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    Interesting article. I only copied in a small section. Towards the end, he says that the treatment for this are h1 and h2s. I'm a little surprised that he didn't mention looking for foods that might be contributing to this but maybe I missed it. tc ... x

    http://thefooddoc.com/mastocytosis_enterocolitis


    taniaaust1 likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    thanks.. that's extremely interesting. My nanna the one link in my family which all the ME/CFS (4 diagnosed or probable cases) in my family comes back to (and the mother of my uncle with systemic mastocytosis).. has diarrhea
    predominant Irritable Bowel Syndrome
    so this article makes me think that she may not just be a probable gene carrier of the issues.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    That's interesting that you have family members with this. I'm less likely to believe in
    a genetic link than environmental factors such as diet or other toxins.

    Has she tried taking s boulardi yet ? It stoped my d after treating h pylori in 24 hours. I take
    it at least twice a week now just to be sure I keep it in my system.

    Jarrow brand is cheap and worked as well as the more expensive metagenics brand.

    All it is is yeast from a plant. Lichi I think ? That's why eating organic raw fruits and veggies
    are so important for us.

    Tc .. X
  4. camas

    camas Senior Member

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    There is a clear genetic link in my family: grandfather->mother->brother and me, but I do believe that toxins in our environment have exacerbated it. We all have masto symptoms including the skin condition finally diagnosed as TMEP Mastocytosis in me.

    My mom has struggled with colitis and IBS forever. They finally gave her a diagnosis of collagenous colitis, but I bet if they went back and re-stained her biopsy they'd find mast cells.

    Our health was better when we lived on our ranch and had pristine air, water, and grew most of our own food. When we moved to the city, we all declined undoubtedly because of the increase in triggers.

    ETA: Study linking mast cells to collagenous colitis. Should have looked this up sooner!
  5. xchocoholic

    xchocoholic Senior Member

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    I just meant most people are still eating toxic foods and using toxic chemicals. If they weren't, our
    grocery stores wouldn't be selling 99% frankenfood. ; ) It's hard to blame genetics when we're all
    surrounded by poisons.

    Most people aren't familiar with s boulardi either. S boulardi can work on c diff overgrowth. C diff becomes a problem whenever there's dysbiosis. Probiotics aren't the same as s boulardi. Can you tell I really like this stuff.. : )

    Tc .. X
  6. camas

    camas Senior Member

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    I think you can blame genetics when you see a clear link between family members. My grandpa wasn't exposed to franken foods or chemicals growing up in rural Idaho in the early 1900s, yet was still a sickly child. He became even worse when he moved to the city. I suspect he felt best in the mountains because that's where he encountered the fewest triggers. I hope the blood tests for the acquired genetic mutations in masto become available soon. I'm not keen on the idea of a bone marrow biopsy. :eek:

    My late husband acquired c diff from the hospital during his treatments for lymphoma. My mom, sis, and I all took Florastor since we were taking care of him and handling his soiled nightshirts, sheets, etc. He still had the infection when he died. Horrible, horrible stuff. We were fortunate not to have contracted it.
  7. taniaaust1

    taniaaust1 Senior Member

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    no she hasnt tried much for it.. she's too trusting of her doctors and tends to just believe them when they say there is nothing much she can do. (she does find thou that peppermint oil helps her IBS symptoms a bit.. something which doesnt help me in any way at all).

    its hard to blame environmental factors when out of the 4 of us in my family with this.. 2 of them live in a different state to the other 2.. and none of us live together (only two of us grew up together). Thou..both me and my sister with this, BOTH of us have bad house mold infestations before we got sick .. before she seemed to catch the illness from me. (I found out recently that I have the genotype which often has issues with molds so if I do have that environmental issue cause.. its genetic too). My two well sisters have never lived in a mold infested house.

    Ive never asked my other two interstate cousins if their houses had a severe mold issue before they got sick but that would be very interesting to know..
  8. taniaaust1

    taniaaust1 Senior Member

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    That's the very irronic thing. Both me and my sister were health freaks way before we both got sick.. and didnt buy chemical products using only natural ones.. I only ate organic, grew most of my own food etc (thou I did work part time as a clearer but that was only after I already had ME). I did thou get maybe more chemical exposure then most as a child (sheep dips every year) but I wasnt sick as a child (extremely healthy, never tended to catch things..only mono).. my sister who is sick, didnt get sheep dip exposure and even has a child hated the smell of chemicals (she has some Aspergers traits) so avoided them even then. Growing up on a farm.. many of our fruit and veg were grown too by ourselves (no chemicals used on those) eg We'd have stewed apricots half the year around from our trees etc etc.

    My two sisters who have stayed well.. they arent health freaks and never have been. One of those are heavily into chemicals..eg will walk around her house every day spraying it with air freshener and have those horrid chemical air fresheners all throu her house, she wont leave her house without being covered with perfume (on top of all her deodourant etc.
  9. taniaaust1

    taniaaust1 Senior Member

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    Im sure I read this year that that they had just discovered one of the genes or the gene related to getting masto.

    Im fairly postive Im carrying the gene thou seeing my dads brother has masto. and due to the masto symptoms ive had in the past.
  10. xchocoholic

    xchocoholic Senior Member

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    I'm running into a similiar situation. I'm just finding out that a family member has my allergies
    just not cfs / fatigue. She's never had my cognitive problems which appear to be mostly from
    having petite mals throughout the day either. So while we have some similiar symptoms
    she never got sick and is fully functional.

    I had petite mals as a child but otherwise functioned well in school and physically. No one knew what they were and everyone just knew I would space out sometimes. As a dq2 gene carrier, neuro reaction to gluten are common.

    Actually I was a blue baby (cord wrapped around neck) and my mother was told that I might have some brain damage. I just found out via google what these were about 6 years ago. Most people don't know there a various types of seizures.

    There's still a lot of confusion on what constitutes a healthy diet and it keeps
    changing with all the new info. I thought eating whole grain wheat was a great idea before I came down with celiac disease. And only after going gf did I begin to understand how our bodies break down foods.

    I'm pro paleo / hunter gatherer but I can see why others chose to be vegan. I haven't
    seen anyone tie either diet to an individual's digestive capabilities. Speaking of eating .. : )

    Tc .. X

    Ps. A lot of aspergers are feeling better gluten and casein free. It's on the web.
  11. camas

    camas Senior Member

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    Yeah, from what I've read, it can be caused by one of at least two c-KIT gene mutations and they suspect other genetic mutations, too. They are supposed to be working on a blood test for this which would sure be nice. I could go up to OHSU right now and get a bone marrow biopsy, but I'm in no hurry since I think the only thing it would tell me is whether Gleevec might be helpful and, since I'm so sensitive, I doubt I could tolerate it anyway.

    On a positive note my TMEP spots seem to be fading a bit on the NeuroProtek.

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