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CFS/IBS - If diet alone doesn't work, what does this mean?

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Nov 4, 2013.

  1. Fogbuster

    Fogbuster Senior Member

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    Im aware im not just tackling IBS here, its CFS/IBS.

    My main symptom is brain fog. No PEM and "chronic" fatigue, just low energy and achiness all over.

    To get to the point, something is stopping my body from healing. Something is stopping my body's healing response from activating when following these strict diets and supplement guidelines.

    Does this mean I have to tackle something first BEFORE i treat my IBS, for example a damaged methylation cycle or heavy metals?

    Diagnosed (from testing) with candida, leaky gut, SIBO and
    mild/moderate organophosphate and mercury poisoning.

    It seems I need to sort something out before I can gain any success on a elimination diet, so if anyone has had any advice, success or experience with tackling this I would greatly appreciate your help!

    Best wishes
    Jamie
    sming likes this.
  2. caledonia

    caledonia

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    The gut is always a great place to start.

    Diet alone isn't going to fix gut problems. You have to kill off the candida and fix the leaky gut. Check out the 4R Gut Rebuilding program linked in my signature.

    The gut bugs will hold onto mercury, so by killing off the gut bugs, you will be detoxing some mercury.

    I also suggest getting 23andme testing done so we can look at your methylation SNPs. If you have ACAT or SHMT, those are called the "leaky gut genes". People with those mutations can have worse gut problems, and you may need to treat for ACAT/SHMT at the same time as you work on the gut to be successful. I have a link to 23andme in my signature.
  3. minkeygirl

    minkeygirl Senior Member

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    I got IBS in 2010, 15 yrs after I got sick. I use diet and acacia fiber to treat my IBS. IBS doesn't seem to affect my ME in any significant way but I don't know for sure.

    I have ups and downs like all of us.

    If you do have candida i use Thorne SF 722 and the candida diet by Karen Tripp. Just google her and you'll get her site. she knows tons.
  4. Fogbuster

    Fogbuster Senior Member

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    @caledonia I've done the 4R's three times before. I could start my own health food shop with the amount of supplements I have, including the SF722 @minkeygirl is talking about!

    I attempted the GAPS diet, killing off the candida and SIBO was half the problem. I was reacting (getting brain fog) from EVERYTHING I ate, even on the introductory stage, so couldn't make any progress.

    I was even paying a GAPS practitioner to help me through the diet as it is just so unbelievably difficult monitoring for sensitivities, delayed responses with OI and debilitating brain fog.

    I used Oregano Oil, SF722, caprylic acid and Rifaximin for the bugs. (A 3 week course of Rifaximin cost me £250 in the UK!) Kefir and probiotics for replacing along with S. Boul and finally HCI and very good quality enzymes. And still no improvement in brain fog.

    I will soon get 23andme done.

    I've done pretty much everything possible to improve and made no progress, I really am at a loose end.

    Something is stopping me from healing and it seems I can't even help myself with having this much cognitive dysfunction from the brain fog.
    aimossy and Beyond like this.
  5. caledonia

    caledonia

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    Wow, you have put an awful lot of effort into it with no results. So frustrating.

    It does sound like getting 23andme would be the next step. If you can afford it, a Nutreval test can also be a good thing to do. Look in my signature to links and info about these.
    Beyond likes this.
  6. xchocoholic

    xchocoholic Senior Member

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    Have you tried the Paleo diet ? The point of this diet is to provide your body with only foods it can recognize. Nothing that needs processing. And no chemicals.

    Other than that, I'd back off all your supplements SLOWLY to see if they're contributing to your fog.

    Some of us have orthostatic intolerance that causes brain fog too. Have you looked at this ?

    Fwiw, I had problems with everything I ate when I first went on the elimination diet back in 2005. I "think" it's because I had celiac disease at that point. Eating easy to digest foods and papaya, mangos and pineapple helped but it still took me about 6-9 months for the digestive pain to stop.

    tc ... x
    merylg likes this.
  7. Fogbuster

    Fogbuster Senior Member

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    Hi @xchocoholic and @caledonia, thanks for your responses. The GAPS diet is extremely similar to Paleo, except for a couple of minuscule differences.

    So I've been nourishing my body with whole and unprocessed foods, killing the bugs, replacing with good ones and still not getting any results, so my thinking is there has to be something else going wrong stopping the mechanisms in my body from doing their job and healing me.

    My gut feeling is either I have a undiscovered parasite, despite doing a comprehensive stool analysis or my orthostatic intolerance (unknown to me at the time) might of stopped my healing progress as I was constantly thinking that my OI symptoms were die off. Also my OI symptoms combined with the brain fog made it impossible to monitor if I was reacting to a food or not.

    This is the million dollar question for me, what could possibly be stopping me from making any progress?

    No matter what vegetable I eat, whether it be zucchini or cucumber I still get brain fog. Is that normal?

    Who can I tag on this forum who is an expert on gut problems?

    Many many thanks
    Jamie
  8. caledonia

    caledonia

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    A couple more ideas - maybe h. pylori. It can be very difficult to discover but cause many problems. Yasko has a two part video on Vimeo about it which will make your head spin even if you're not brain fogged. If you read my 4R document I include her method for testing to find h. pylori. She has people test repeatedly as different bugs can be uncovered with different layers. It takes some people 6 tests to find h. pylori.

    One other idea - there is a least one person on here (Freddd) reporting problems with vegetables because they can't convert the folate in them to methylfolate.
  9. aimossy

    aimossy Senior Member

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    I have had similar probs as fogbuster, tried a multitude of diets, supplements and probiotics. I didn't know that about the h pylori @caledonia thankyou.:)
  10. xchocoholic

    xchocoholic Senior Member

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    I only briefly reread the criteria for gaps, but saw they allowed dairy.

    One of the reasons the paleo diet is so effective is that it eliminates the foods many of us are intolerant of from eating these for years. We don't always have obvious symptoms from intolerances or allergies which is why testing can be helpful.

    And even then sometimes we can eat or come into contact with these and not react. I know someone with a severe peanut allergy that doesn't always react.

    What veggies, meats and fruits each of us can tolerate varies too. The paleo diet is a guideline for how to eat healthy but we
    have to avoid our intolerances.

    fwiw, I got a chuckle out of your statement about finding a diet expert here. The diet experts don't agree on some points even.
    Oils are an area where some call these processed and unhealthy while others swear we need these. Personally I feel better without processed fats.

    tc ... x
  11. xchocoholic

    xchocoholic Senior Member

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    oops. i see you said expert on gut problems. My bad.

    That doesn't exist either tho if you consider how many different opinions there are on this.

    That's why I see an integrative dr who understands this but there again, testing isn't as good as it could be. From what I've seen we're still working on this.

    Ok, I'm past tired now so I hope this made sense.

    tc ... x
  12. caledonia

    caledonia

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    Here's one more thing to consider. I had candida and was literally on various anti-candida herbs for many years. If I stopped taking it, I would feel flu-like aches, extra tired and a low fever. If I took it, I was ok. About once a year, the herb I was on would wear out, the symptoms would return, and I'd have to switch to another herb.

    A few months ago I did a stool test to check up on things. I no longer have candida. I stopped taking the anti-candida supps and feel fine with no issues. This is a like a miracle. This happened some time after I started methylation. I believe that methylation did have something to do with this, and it's not just a coincidence.

    Like I said, I was on these herbs for probably 6 or 7 years. The CBS protocol and methylation are the only things I've changed this year.
    aimossy and Beyond like this.
  13. Daffodil

    Daffodil Senior Member

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    my new local doctor seems to be convinced diet alone can work, and claims he has cured 2 people of fibro with it.

    personally, i think it will help but not cure me. i am having such trouble staying on such a restrictive diet (the one that he recommends), that i don't think i could ever do it for long enough to see if it alone would work.

    dr. demeirleir and many lyme doctors i have read about, include gut treatments and diet as an important part of their protocols, but they also treat reactivated infections.

    honestly, nothing has worked for me so far and i have tried a lot...so i dont really know what to say...just trusting the CFS experts and hoping their approach is best.
    Beyond likes this.
  14. Kati

    Kati Patient in training

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    No one gets cured of cancer, rheumatoid arthritis, lupus, HIV/AIDS from dietary changes, so why expect and believe that it will cure ME?
    aimossy, Beyond and Valentijn like this.
  15. knackers323

    knackers323 Senior Member

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    Hi Daf, what is the diet the dr uses and how long did it take for the two that cured the fibro to begin to see effects?

    I have heard of two people who say that the main thing to their cure from cfs was diet.
  16. Fogbuster

    Fogbuster Senior Member

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    @Kati Not sure where you got the idea of me suggesting diet would cure my ME....I merely am trying to improve my symptoms.

    Also, there has been numerous accounts of people curing or drastically improving symptoms through diet when tackling these so called "incurable diseases".
  17. Daffodil

    Daffodil Senior Member

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    hi knackers. well this doctor told me to eat a bunch of vegetables and meat but wasn't big on leafy greens...he seems to like the paleo type of plan. he told me no sugar at all and wanted me to eat 3 smaller meals and wait until i am hungry for an hour before i eat. i guess it is all about lowering inflammation as much as possible.

    he has some other points but i have seen him only twice so far so i think he will tell me more.

    i just don't know what to think.

    xoxox
  18. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Being someone that has had extensive testing including 23andme I can say that nutreval and other tests of actual status are more telling than genetic, but getting the two is the best to figure out the bigger picture. Add someone competent that does not have brain fog doing all the reading and planning for you and that is a win mix.

    And yeah I´ve seen people that didn´t get far with gut treatment and their health started improving when they tried methylation. I mean we are together in this, what goes first, what does help... we are all trying to discover that. I think that for me adrenals and gut are biggies but who knows. If some months treating these I dont get better I will start with methylation.
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  19. caledonia

    caledonia

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    @Beyond, my adrenals have been improving with methylation treatment. I totally don't tolerate any kind of direct adrenal supplementation such as glandulars, DHEA, etc.
    Beyond likes this.
  20. knackers323

    knackers323 Senior Member

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    Hi do you know the idea behind waiting the hour and no leafy greens? Thanks

    I have tried the paleo diet and I do notice a positive difference but it is very boring and hard to keep up.

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