Wow, thanks for all your thoughts!

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Originally Posted by JaneS 
Yes it sounds bacterial. It certainly could be c. difficile.
The only probiotics I know of with clinical studies showing effectiveness at reducing c. difficile is Pharmax Intensive and VSL3. The latter can be had by prescription so I think it might be worth it to ask your dr. for that one as it may be covered by Medicaid. Also the beneficial yeast, Saccharomyces boulardii maybe helpful. Did the water kefir help you? Kefir has beneficial yeasts, but personally water kefir did squat for me, not sure if it just wasn't enough of a dose or what.
I'd be asking the dr. exactly what bacteria you have and how effective the antibiotic has been shown to be against it. Ditto the probiotic they rec. The antibiotics "of last resort" are Vancomycin and Cipro. They really REALLY mess up your gut. If you do take antibiotics, I highly rec saccharomyces boullardii taken with your antibx, as it is a beneficial yeast it is not killed by the antibx. Then do very strong probiotics after you finish taking the antibx.
You might be interested in reading more about a mother's journey with c. diff and her son in the book "Bacteria for Breakfast" written by a pharmacist. She used VSL3 when multiple antibx courses couldn't cure it, it kept coming back. Naturally b/c if you wipe out a lawn and then do not reseed it with healthy grass, the weeds just grow back.
The thing with the immune system is that the gut flora is the gateway... you might have developed some intolerances that will not necessarily be IgE allergies as you seem to already be aware of. A slow and carefully done elimination diet might help you uncover your intolerances on your own. And digestive enzymes taken with meals, go slow, they can irritate an inflamed gut.
Gluten and casein are usually the first the body reacts to b/c the proteins cannot be fully broken down by an inflamed intestinal lining, the enzymes are not being produced, so I would first trial no dairy, no wheat and then go from there. The thing with food intolerances are that once you rebuild your gut lining, you most likely can start eating these foods again b/c your body can digest them, and your gut lining is not longer leaky.
Glutamine supplements and/or 24 hr. bone broths are very helpful for rebuilding gut lining.
The SCD diet might be helpful to you as well, eliminating hard to digest grains and sugars: www.breakingtheviciouscycle.info
Feel free to ask more ?s and be sure to update after your appt, I'll be thinking of you. 
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Thanks so much Jane.

So the GI said she very much doubts that it's c. Diff, and that she's seen a whole bunch of it lately. She also said she can't (doesn't?) test for what bacteria it
is. She said it's native to my colon. I don't know how she can say that for sure. ??? At any rate, that book still looked full of good info, so I have a copy coming, thank you!
I'm not currently symptomatic. She seemed to indicate they view SIBO like GBS - they won't test me for it again, they'll just assume that's at play for me, and she said that it tends to recur. :/ Because I'm not in pain right now, she said I could do nothing, just do probiotics, or do antibiotics and probiotics. I don't want to carpet bomb with antibiotics at this point - she said they recommend Xifaxan if I ever want to go that route. For probiotics, they hand out coupons for Align at this clinic and call it a day. :/ I've had no luck giving them away even.
Oh, and water kefir definitely changed my BMs, like right away, drinking 2C/day. But I couldn't say if it was beneficial honestly, because it was fairly soon after I started making it that I had my first flare up, which then continued over the last year. I think it's not related, but in the back of my mind, there's always been a tiny doubt about whether or not I did this to myself using a bad culture. My dad *definitely* thinks that. I bought the starter from Fruit of the Vine Naturally, and it always seemed and tasted fine. I think it's just my "Sanitize Everything!" upbringing, still haunting me.
I've tried enzymes a few times and they left me doubled over with a heat pack for 30 minutes each time. I have no clue about how to start slowly with them. I assume I need to avoid them until I'm healed up a bit more. A quick question: if a person doesn't tolerate enzymes, does that generally mean the gut is inflamed? I'm actually thinking of someone else here who's had bad luck with enzymes. Just curious.
I have not done tons of bone broths yet, and in warm weather, oh it just doesn't sound appealing at ALL. lol I guess I'd rather supplement until it's not so hot in my kitchen. But I can certainly go GF and I'll look at SCD. You know, it's overwhelming. Just going DF has been a real challenge, so... all in I guess.
I will have to come up with a shopping list of my own apparently, so any further recommendations about where to start would be much appreciated!
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Posted by californiajenn I'll second mostly what Jane said.
I did not have an official diagnosis but 2 doctors agreed with me when I told them I thought I had a SIBO, in addition to other abnormalities.
I'm healing my gut by going on the GAPS diet; adding massive probiotics (bottled and just recently food due to sensitivities); cutting out most fruit and all sugar except honey, especially apples and pears (foods high in fructose are difficult for a damaged small intestine to process); getting on the proper supplements, including mag, trace minerals, Core Level Health Reserve, L-Glutamine/Permeability Factors, Digestive enzymes, etc.; restarting yoga to stimulate the nervous system to promote healing; and doing 1 round of Humaworm (I'll be doing another round in the next few months.) I'm sure there is other stuff I've done but that's the gist of it. I AM healing and it's very exciting.
Personally, standard western medicine was useless to me. If you decide to use antibiotics, please take probiotics (bottled and food) to replace the good ones. It's actually standard procedure in other countries. Also, be aware the bacteria is due to a damaged intestine and chances are, something else will crop up if you don't heal yourself.
Gluten intolerance is linked to a damaged small intestine so I'd get it out of your diet asap. http://coolinginflammation.blogspot....-and-galt.html |
You know what's frustrating here is that I had a endoscopy done and they told me they saw no damage in my villi. But how on earth can that be true? I mean, I don't know how far in they went. So it's possible then that they just missed it right? What informed your choice to try GAPS as opposed to SCD?
BellaClaudia, we've been DF for over a year but I'm sure there's always more I can learn! Thanks!

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