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Breath tests for SIBO and intolerances and diets?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by aimossy, Dec 4, 2013.

  1. aimossy

    aimossy Senior Member

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    I am learning slowly this area is quite overwhelming in how to tackle.
    The gut and food stuff is like a Rubics' cube to meo_O.

    I have ME and I have been to bucket loads of specialists I think I have seen about four Gastro specialists in our public health system over the years. I have tried quite a few things and probiotics(bad idea for me not fun) and FODMAPS (but not a full fodmaps the dietician new less than me and it equalled a gut that became too slow to tolerate) its like you learn from mistakes and if I did that again I would have to do take serious fibre which I usually can not tolerate.
    I am gluten free and lacto free but the gut has still got worse and worse over time. I decided to go to a gastro privately again and researched the specialists we have.......this time I was in for a surprise!:woot:

    Along with EBV , toxoplasmosis, Atypical pneumonia (is that mycoplasma?) that seemed to have been all trigger possibilities in my case I also got campylobacter.
    Um yeah it seems this was over a period of about 2yrs my immune system got a hammering. HELLO ME.

    The specialist was very good and respectful and sincere and listened an not dismissive in the least.
    He wants me to have 3 breath tests and check for SIBO. I had no idea this was even available here, I was quite surprised so I have been reading about SIBO now. He is thinking post infectious IBS from the campylobacter.
    Im still thinking ME:lol:

    There seems to be the theory that some of the diets like SCD GAPS and Paleo and FODMAPS can help because they are helping SIBO.....of course you can have specific intolerances as well. I don't know if this is true of course......is this the same as leaky gut? Im wondering what others make of this?:confused:
    Geeeze I am going to be on a slow mission with this. I don't know if the info im gaining is correct.

    I don't know the specifics of the 3 breath tests except given solutions etc and checked for gasses in the breath.
    I guess that they will check for lactose and fructose intolerance.

    How accurate is the testing? Is there a diet specific to SIBO? I understand that dealing with it can take up to 2 years.

    Am I on the right track im wondering?
    Im wondering how its been for others who have had the breath tests and SIBO thing and how all these diets fit and Im wondering about leaky gut and I think Im wondering too much about about this Rubics' cube:bang-head:

    Aim:)
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  2. xchocoholic

    xchocoholic Senior Member

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    Unfortunately, the info in this arena is still unknown and being debated. It's possible that your cfs is related to one or more root causes, sibo, lyme, celiac, etc etc and you'll respond completely to treatment. But from what I've seen, it's also possible that your health
    will improve but you won't be "normal" again. Any improvement is welcome.

    I'm sure over time this will get straightened out, but for now based on what I've seen the Paleo / Wahls or whole foods diet is our best bet. Minus individual intolerances of course.

    As far as sibo, I was told that I'm negative via a stool test but I don't know how accurate stool tests are for sibo. I have leaky gut tho and as a celiac with cfs/me my chances of curing my gut are minimal.

    You may find it helpful to look at what the biomedical autistic community is doing. The book Healing the 4 's was an easy read. I'm not up on their latest anymore but googling autism cure should give you helpful websites.

    tc ... x
    aimossy likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    My take is that leaky gut can have a range of causes and that it can lead to ME and other auto-immune diseases.

    So one possible causal chain can be:

    SIBO leads to leaky gut; leaky gut leads to ME.

    If you do a search on Phoenix Rising for 'SIBO' (not case-sensitive) and tick 'search titles only' you will find lots of threads, including some referring to breath tests.
    aimossy likes this.
  4. globalpilot

    globalpilot Senior Member

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    I can speak from experience related to my own case. The accuracy of the breath tests depends on where in your small intestine the overgrowth is. And whether it is producing hydrogen or methane or not. Not all bacteria produce these gases. Glucose is absorbed very quickly so the glucose breath test only picks up SIBO in the first part of the gut before absorption of the sugar. Lactulose is not absorbed at all so it's hard to tell if elevated gases are due to SIBO or from the colon. My GI doens't do the lactulose breath test for this reason.

    My glucose breath test for SIBO was completely normal, yet an aspirate in the duodenum showed significant overgrowth. My jejunum aspirate was normal so if the doctor had only tested there , it would have been missed.
    aimossy likes this.
  5. globalpilot

    globalpilot Senior Member

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    A stool test won't tell you what is going on in your small intestine.
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  6. aimossy

    aimossy Senior Member

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    Thankyou @xchocoholic @MeSci @globalpilot that's helpful stuff for me.
    I will have to see how this testing goes I don't think it will happen till feb next year.I might have to do a mish mash of diets.
    I am going to have to research more up and check out wahls paleo autoimmune paleo.... high fats, lactose and high fructose, probiotics products and soy/legumes and eggs seem to be problematic oh far out seems everything is now.....far out what will I end up being able to eat.
    I see @ mesci has a status message thing saying cant remember something about grains and low sugar. does that mean not feeding leeky gut bacteria carbohydrates? hmmmm maybe just try that first.
    searching and decisions.
    away with family to the bach soon and not back for ages I will miss PR and carry on the mission with this.
    Thanks again:)
    rosie26 likes this.
  7. CBS

    CBS Senior Member

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    A few words about my own IBS and the hydrogen methane breath tests, I had moderate nto severe "IBS" for 6 years. During that period I was diagnosed with SIBO at Mayo clinic analyzing duodenal aspiration collected via EGD. Flagyl and Cipro (systemic antibiotics) were prescribed to treat bacterial over growth. They had no effect besides a drop off in over all well being.

    Three years later the notion of SIBO was revisited (lots of scans and scopes with little to show for it - tons of GI distress, especially gas and bloating with pain). The first hydrogen methane breath test was strongly positive for both. No real diet change was ordered besides a general instruction to limit simply carbs/sugars. Pharmaceutically, I was Rx'd Rifaxamin 400 mg QIB for 2 weeks. Three days into the Rifaxamin my GI symptoms had resolved. One month later my follow-up breath test was negative for both hydrogen and methane and still symptom free. Three months later symptoms returned and I took another round of Rifaxamin. This relapse every 3-4 months continued for some time. We were treating the bacterial overgrowth but not the cause. In many the cause is a loss of GI motility. Starting on Synthroid increased my GI motility and I have not had any GI issues for the last two years.

    Good Luck.
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  8. aimossy

    aimossy Senior Member

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    @CBS peoples comments are so helpful.:) Ive had ME for about 8yrs now. Im hoping still to find some approach that helps decrease the gut distress at least the severity of that area for myself.
    I will stay on my status quo diet until I have had the tests and keep researching diets etc in the meantime. I don't want to alter the test results but ill have to wait till feb to do the tests now.
    Damn family needing their holidays, they have scuppered my plans! ha:lol:
    Last edited: Dec 7, 2013
  9. aimossy

    aimossy Senior Member

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    @MeSci you opened a whole other world with search thread title only.tehe!
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  10. xchocoholic

    xchocoholic Senior Member

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    Um, I'd forgotten that my doc ordered a long list of tests when I first started seeing her and that's how she determined I didn't have sibo. Not that I couldn't have gotten it after those tests.

    I just wanted to clarify that : )

    Also, everyone I know using diets to control their symptoms has different reactions to different foods so there isn't a one size fits all diet. For instance, poultry makes me sleepy so strictly paleo is out.

    And I get pelvic pain and kidney stones from foods high in oxalates which eliminates quite a few healthy foods. Info on oxalates can be found on the yahoo trying low oxalate board.

    Dr Myhill and Dr Wahls have some great info. Lots of new terminology but doable.
    tc .. x
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    As I said in another thread re oxalates, even if you have kidney stones you don't have to avoid a wide range of foods. This paper:

    http://ndt.oxfordjournals.org/content/15/1/117.full

    says
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  12. xchocoholic

    xchocoholic Senior Member

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    hi @MeSci

    Since at least 2007, the year I found this on the web, Susan Owens and others involved in oxalate research are changing how oxalates are viewed. The vulvar pain foundation has info on this as well. The info is documented on the web.

    Personally, I know from about 5 years of experience that I get pelvic pain from high ox foods including seeds and nuts because my reaction happens within 15-20 minutes of ingesting these. My intense reaction resolves within a hour or 2-3 but I have lingering symptoms for a couple of days. I had symptoms 24/7 for years before discovering this connection.

    For me the origin of kidney stones isn't as easy to track. So far I've gotten stones anytime I tried to increase my oxalate intake but since the reaction isn't immediate I can only infer a connection.

    Since I found this info on the web in 2007, I have to assume there's been even more progress in this area in recent years. From what I saw back then, the reason oxalates became an area of interest was due to the number of autistic kids showing oxalate regulation problems after adding high oxalate foods into their diets. The researchers can answer questions you may have tho.

    tc .. x
    Last edited: Dec 7, 2013
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Fair enough - it makes sense to avoid foods that cause problems.

    I just did a Highwire search for more recent papers than the one I linked to, and there does seem to be a lot of controversy about oxalates, and variations in absorption and susceptibility depending on a range of factors, e.g. as detailed in this paper from 2011.
    xchocoholic likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    Interesting paper. thanks. That info was and probably still is presented on the yahoo trying low oxalate board regularly.

    I didn't see any mention of pelvic pain in that link tho. The vulvar pain group has some interesting tips for avoiding pain.
    Taking b6 plus magnesium helped me for a few years but then I started having trouble digesting these so I just stopped taking them. I can't remember the doses but I remember that I needed what's considered a med - high dose of b6 to block my pain reaction.

    Imho it would certainly be an interesting area of research for a scientist because there are so many factors to consider.

    tc ... x
  15. aimossy

    aimossy Senior Member

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    It took a long time to get tests done and i have been really busy with things but have found now I am a high methane positive within 60 minutes for lactulose and fructose. So a real positive SIBO result. I literally felt drunk on the way home after the tests it was the craziest thing!
    I have real problems with the slow stuck gut and difficulty breathing.
    I was put on a fodmap diet and it made me worse with more pain (only slightly less bloat but some brain fog improvements and I have been given Rifaximin which I haven't taken yet. There is new pub med research out about constipation predominance with methane producers and reading up it is apparently harder to treat. I am struggling with a plan of what to try out and whether to go natural antibiotics.

    I wonder if people have ever been made worse by taking Rifaximin? Also methane producers apparently need two antibiotics. Rifaximin and neomycin is more effective - well apparently. None of the studies are fabulous.
    Wouldn't probiotics feed sibo, I mean I would go ok on align bifantis as I tried that before and it does get you moving but I don't know why. Anything high fibre makes a blown up mess of me.
    Which natural antibiotics could decrease methogenic bacteria? Anyone's thoughts on all things SIBO are welcome.
    Hate how we have to be our own ginea pigs!
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  16. aimossy

    aimossy Senior Member

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