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How best to treat SIBO and intestinal permeability?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Scotty81, May 23, 2015.

  1. Scotty81

    Scotty81

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    Hello,

    My daughter, who had been previously diagnosed with CFS/ME, FM and has other GI issues, was recently diagnosed with small intestinal bacterial overgrowth (SIBO), and has been generally symptomatic for the last 11 years. She also tested IgG positive to many foods and her practitioner said that it's not that she is allergic to these foods, but that it is an indirect marker that she has intestinal permeability (aka leaky gut).

    To help eliminate the SIBO, my daughter has been on a FODMAPS diet (for 8 weeks), and has started on herbal antifungals. Neither have helped yet, but she is still ramping up on the antifungals, so it's a bit too early to see if these will help.

    1) My first question is whether one should first treat the leaky gut with possibly glutamine (and other supplements) and then tackle the SIBO, or do the treatment in the other order.

    Potential reasons for healing the gut first is that it allows 1) the gut mucosa layer to heal, 2) the cell walls to repair, and 3) a lessened immune response since the foods would not pass through the intestinal wall. A potential reason to treat the SIBO first is that treatment would remove this additional stress on the body. Also, if you don't treat it first, you will continue to "feed" the bacteria while you are treating the leaky gut. If you are on a FODMAPS (or other) diet that reduces fermentable foods while you are treating SIBO, then this should theoretically limit the SIBO activity.

    2) So, my second question is whether my daughter should continue to be on FODMAPS (considering that it hasn't helped) while she is treating SIBO. I also realize that there are natural antifungals and antibiotics used to treat SIBO, so if the natural products don't work, her practitioner may want to consider the antibiotics. But besides redoing the tests that indicated SIBO in the first place (a hydrogen-methane breath test & certain markers from a urinary organic acids test), it seems like the way to tell if the products are ‘working’ is if you feel better, which she has not.

    3) My third question also relates to the relative importance of limiting IgG/IgE foods. That is, if the leaky gut involves the immune response, should she continue to limit the IgG/IgE foods while treating the leaky gut/cells? On the other hand, if you fix the cell walls, and the leaky gut, do you really need a restricted diet anyway? Given whatever extent of intestinal permeability that she has, and the extent of her issues, I wonder if temporarily limiting/rotating IgG/IgE foods more of a ‘nice to have’ or more necessary?

    4) My fourth question is whether anyone can comment on their experiences in SIBO treatment - either with synthetic or herbal antibiotics and whether they were helped or not on a low FODMAPS diet.

    I realize I've asked a lot of questions here, but I also realize that this specific area is not necessarily straight forward to treat. Thank you in advance for any responses.

    Sincerely,
    Scotty81
     
    snowathlete likes this.
  2. leokitten

    leokitten Senior Member

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    Best treatment for SIBO is rifaximin and good probiotics. Rifaximin has the best evidence of efficacy and it doesn't have most side effects of other antibiotics because it has almost zero bioavailability. With SIBO that is ok because the problem is in the gut and absorption into the body is not necessary.
     
    Last edited: May 23, 2015
  3. Ema

    Ema Senior Member

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    Ketotifen may also be helpful for healing leaky gut.
     
  4. 5150

    5150 Senior Member

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    I have had gut issues for several years, 10? I have always suffered through it or tried to slow things down with 200mg of Advil. Problem is, it's tough on your kidneys since it limits what other meds you can handle that day (cumulative on kidneys).

    Now for the Good News. I read on an IBS forum about people having some relief , to an amazing level, with a probiotic called VSL #3. I searched it, found it, the site provided a nearby store locator, and I went off to KMart Pharmacy. It is located in the frig inside the pharm ... problem is , it's rather on the expensive side ; nothing like Xifaxin though! or can be recd from Amazon if you trust their refrigeration during shipping.

    I have used it Faithfully for 5 -6 days now, and guess what? My gut pain is gone. It started immediately to be gone.
    And hasn't come back , yet. I have continued my sensible diet /no sugar gluten free etc, But this is still exciting to me, almost unbelievable. It's a mixture of different pro biotics. I will keep posting about what happens.

    Best wishes.
     
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  5. ahmo

    ahmo Senior Member

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    Here's a comment that might be useful to you, re specific probiotic, clostridium, relationship to SIBO.

    I posted a blog about my choices for herbal antimicrobials. I combined them with aprotyolytic enzymes to help clean up the organs. I found the 10 week process fairly grueling, needed daily coffee enemas to deal with the die-off, but resulted in lowering several of my supps, and putting things back into my diet.
     
  6. globalpilot

    globalpilot Senior Member

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    Since the FODMAP didn't help I'll suggest another diet to look into. It is a 'low fermentation' profile. Even though the FODMAPS removes certain foods, there are still many foods not removed that will ferment. You can find the diet at digestivehealthinstitute.org. The owner also wrote a book that is worth reading. I am not affiliated in any way.

    Also you were asking about timing - I think this is very trial and error and you won't know in advance if you should start a before b etc.

    Personally I would remove any foods that are causing reactions. It's just one last thing the gut will have to deal with.

    Also another thing I've heard from others with inflamed guts (which may be different than your childs situation) is very high doses of glutamine (25-30grams/day). I'd check to make sure this is safe first. I am doing this myself along iwth CWP protein and it seems to be helping tremendously. CWP is antibodies derived from colostrum. I take 5grams/day.

    Best of luck to your daughter.
     
  7. 5150

    5150 Senior Member

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    Checking in re the use of the VSL#3, as per my previous post.

    getting close to 2weeks of use, and it's still effective. i.e., no pain, and good digestive function.
    No negatives to report. Computing cost/benefit analysis: I think I will keep going until it stops working.
    It comes out to ~$450. for 6months of pain-free + a functional digestive system. I will take that!

    more later.
     
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  8. snowathlete

    snowathlete

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    I was never diagnosed with SIBO, my breath test was normal, so I haven't researched it in any depth, though my view currently is that there is a lot we dont know about it and there are lots of ideas and protocols out there based on little evidence. But i havent researched it enough to form any solid viewpoints on it, just saying take everything slow and look out for adverse reactions.
    But i am posting because I have some other similar experiences that may be relevant.

    I have mecfs, and had/have lots of food intollerances develop with that as shown by antibody testing but also later more obvious and confirmed by the reactions themselves, and was put on a long course of antibiotics and as a result developed more severe gut issues (ulcerative colitis) - so bad things can result from taking abx, though i am not suggesting your daughter avoids them necesarily, plenty of people take them without developing IBD, and htey have their uses.

    My food intollerances got much worse too, and i spent the last year or so rebuilding my gut flora, after coming off the abx, which is slowly working. i have been eating bread and drinking coffee this week, which a year ago i absolutely could not do. So food intollerances can certainly be down to your gut flora (perhaps, or perhaps not, linked in with leaky gut as the mechanism at work) and it can be improved, but also made worse.

    Whatever treatment you go with, i would just suggest getting a uBiome or American Gut test first. It's not expensive, and has been the most valuable thing i have done having a couple of tests with uBiome. I just wish i had known about it before I took the abx as it is now obviously too late to get a snapshot of my gut at that time before that intervention. I had a similar test with a lab but it was not very reliable I dont think. You may find that information very useful later, and right away it might indicate some things that you can do to improve things. You can obviously do such a test after, or during, the abx too, but ideally you want a baseline to compare against.

    Probiotics like VSL3 are worth trying, certainly, but personally I would suggest narrower probiotics first. Simply because VSL3 is a mix of several different types of bacteria and they all have different effects. By taking seperate probotics I was able to find that some help me quite a bit while others make me worse. Had I taken them all together then I might have got some other overal reaction.

    Regarding diet, when I got UC I got to see a dietician who suggested I go on the specific carbohydrate diet and have minimal fibre. Thing is, this starves you gut flora and as I know my UC was caused by gut flora being decimated I thought this was a bad idea, and would likely make things worse, so I decided to do the opposite, and I have more fibre now than ever before in my life, and that seems to be working well for me. So I'm just saying that if the diet your daughter has been put on doesn't work, then maybe try something else, perhaps even radically different.

    Oh, and I found that I had to cut out the offending foods that caused me reactions, there was really no other choice in that, but every three to six months I would try adding in one thing that previously caused me problems to see if it was still causing problems and am slowly reintroducing a few things now.

    Hope there is some help in that message somewhere.
     
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  9. 5150

    5150 Senior Member

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    quick update: this is going well. My gut has calmed down , to a way it hasn't worked in Years.
    So far, so good. Of course I am hopeful about this being helpful not just for myself. The reason I'm putting this info in here is due to life-information I continue to hear, about how we are suffering from gut issues. . .such as Scotty's daughter. Really hope this test-run continues well and that others can gain some relief,too. I will say if at 3weeks, it's still working, that should be a pretty good indicator that it's helpful. I will let you know then.

    best wishes.
     
  10. Mary

    Mary Forum Support Assistant

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  11. aquariusgirl

    aquariusgirl Senior Member

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    are there any docs/gastros who are incorporating the ubiome and American gut stuff into their work? someone who could consult on our results?
     
  12. 5150

    5150 Senior Member

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    It's been about a month since starting the VSL#3.
    It's still working, even through a couple of times "cheating" by eating non-sensible foods.
    Seems to work best with only a small bit of food & if taken 2Xday--> in the beginning phase. After it starts to be effective, I dropped the dose to 1Xday.
    Hope this continues, and hopefully others can gain some relief,too.
    Sure beats having non-stop pain and unruly digestive process.

    All the best to your daughter, Scotty81.

    Edit: although the product I find to be helpful to me now, there is no guarantee it will continue. If it changes, I will attempt to let it be known here. Meanwhile, I emphasize that I am not a trained medical professional and that each of us may have their own experience, maybe different from mine. So don't take the recounting of my current situation as encouragement to try it. It is everyone's personal decision. I will not offer any endorsement of any commercial product to others, nor do I intend to offer medical advice. Thanks for understanding my position. Rules are rules. I try to follow that policy here.
     
    Last edited: Jun 16, 2015
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  13. 5150

    5150 Senior Member

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    still going well, but must remain faithful in making good food choices.
    "It ain't over 'til it's over."

    Hope all is well as far as it can be. . . for everyone.
     
    Timaca likes this.
  14. Timaca

    Timaca Senior Member

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    @5150 ~ Can you comment on what your GI issues were.

    Also, by making good food choices for you is that avoiding gluten and sugar? Anything else?

    Your story is intriguing.....thanks for sharing and updating.
     
  15. 5150

    5150 Senior Member

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    now in the midst of a crash... unknown yet, but surmise a bad food choice; maybe also related to someone opening an old cedar chest, known to contain items from a previously known "allergen house", within an area I hadn't anticipated. Perhaps this is a mold-induced episode, but not the source of my original problem(s). The food was an organic brown rice-based in a chip form, but also with other good ingredients. I have inspected the label, again, and found I made a poor decision: organic whole masa corn flower! I know corn is the worst inflammatory food known, yet it slipped by my perusal. Plus some things too hot for an already-inflamed gut: mustard flour,spices, black & white pepper, just a really poor decision on my part. This food & the probable, at least dust exposure and maybe mold?, has knocked me off course. Just goes to show how vulnerable I am, yet was reminded by this bad crash, the need to pay utmost respect to what is put into my body.

    Yes, I have avoided gluten and sugar for years, but am once again reminded: no slip-ups allowed.
    will try to get back here as energy permits.

    Edit: Maybe will open a new thread, as this one is Scotty's. Thanks for inquiring.
     
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  16. Timaca

    Timaca Senior Member

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    Tag me when you start a new thread.
    I hope you recover quickly!!!

    Best,
     

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