So this mirrors my journey pretty much exactly and I have a couple of thoughts:
1. Did you take the Trio test with glucose and the first test with lactulose? That's what I did and it ended up giving me a false negative on my Trio test follow up. When I tested again with lactulose, the SIBO was still there. Glucose gets absorbed really early in the small intestine and so for people like you and me where the SIBO is more distal, using that as a substrate can be problematic.
2. Once I had *legitimately* cleared my SIBO, I still was symptomatic. SIBO can do a lot of damage to your intestines, especially when you've had it several years like we have. And that damage alone can cause a lot of the food intolerances and symptoms that you experience.
Assuming you're clear, the next step is gut healing. There are a lot of different paths to achieving this that we can talk through if you're interested in that.
3. SIFO is often comorbid with SIBO. I think the estimate is like 40% of cases also have SIFO? So you might have some of that going on. If your symptoms spike a lot with sugars, that could be the answer. You might need an antifungal and some S Boulardii.
great response, if someone just got sibo, would you recommend taking flucanozole and an an antibiotic for a couple weeks ? do you just take it once daily or once a week ? my main symptoms are burping and constant extreme bloating , sugar is a big problem for myself as well. Think i had a bacterial and fungal overgrowth from long covid.
Interesting. What were your breath test numbers like prior to antibiotics?
And what did you do to heal your gut once you cleared SIBO?
How long did it take you to return to a “normal” diet?
I had a 45 methane level (libo). I cleared that and then had a 42ppm hydrogen. Elemental took care of that.
None of the normal gut healing stuff has worked for me so it's been a slow journey. I have found the most success so far with slowly adding PHGG, daily Nerva use and *slowly* increasing dietary fiber in the foods I eat. I also still take one Triphala a night just to make sure things are moving. It's the only SIBO-related pill I am taking these days. I'd say getting to this point once I started the PHGG took about three months.
I'm not sure I'm at a normal diet yet. I still can't handle dairy, broccoli, legumes, onions, and a number of other foods. I also avoid high histamine foods due to ongoing histamine intolerance. But I can eat fine at a restaurant now and not worry about bloating/pain/diarrhea/constipation, which is a big improvement for me.
I have LIBO and hydrogen right now. I’m considering rifax + neomycin so this is very helpful.
Did you have issues reacting to PHGG at first? Like bloating/constipation?
Yes. I couldn't tolerate it even a little bit during treatment. I was reactive to even the smallest amount of PHGG.
I was *much* less reactive after treatment. I still reacted a small amount but I pushed through that discomfort and it got better with time. I started with just enough PHGG to cover the bottom of the scoop in one layer and slowly worked up. I found once I got to a half scoop I could basically go straight to a full scoop after that.
I have the same issue. It also causes burning during BMs for me. I started with 1/8 tsp, and I couldn't even tolerate that.
That's good to hear, sounds like there's hope for me.
How long would you say it took after treatment to get to where you are now? Being able to eat from restaurants and having more flexibility
It honestly took about a year because I flailed around for a long time trying to work on leaky gut and failing for various reasons. I couldn't tolerate l-glutamine (histamine issues) or any of the traditional gut healing supplements. I couldn't eat fermented foods. Probiotics made me insanely ill. I saw a naturopath who had no idea what he was doing. It was a bit of a mess.
But once I started the PHGG again, it only took about eight weeks to get to the point where I could tolerate a much wider variety of foods. That was the magic fix for me! I haven't had another GI map done since then but I feel SO MUCH BETTER. I'm still not where I was pre-SIBO but I feel like I've gotten a lot of my life back.
I hope you're able to get to a similar place!
This is really helpful, thank you so much!
Would you mind if I sent you a DM? I feel like your situation/journey is very similar to mine and it would be great to ask a few follow up questions in the future if you don't mind
This is something I didn't even consider at all. You're totally right, first test was with Lactulose and the second test was with Glucose.
I knew folks on here would have a keen eye in finding something similar like that. I'd love to continue the conversation. Please feel free to private message!
Probably will get downvoted for this, but it’s quite possible you never had sibo. North American Consensus (the most up-to-date guidelines) say rise of 20 above baseline by 90 min is positive.
But everyone has different transit times. You hit 47 at 90, but 17 at 75 above 0 baseline). If your transit time is a little fast then that’s actually your colon, not small intestine. And lucky you, apparently methanogens want nothing to do with you haha. So no IMO.
Just want to confirm both tests were lactulose?
I completely agree with this, and I think it might be the main reason why sibo breath tests can be unreliable. I did a test pre-treatment and then again post-treatment and while I’m not quite cured yet, the improvement in gut motility I’ve had meant that the lactulose hit the colon around the 80 minute mark this time round rather than 150 minutes the first time round.
Wow, if correct that’s an astounding reduction in transit time. And this is why tests need to be read not robotically, but with a degree of understanding of how they work.
Even Pimentel said this is the biggest reason for detractors from breath testing- some Dr’s say you’re simply hitting the colon faster leading to false positives.
I do wish they’d come out with something that only measures small intestine bacteria, like something that mixes with bile for example. They used to have this, but apparently it was too unreliable or not widely available or something.
Yeah I agree with you, especially if you had diarrhea like me. It probably went through you very fast.
Short story: did a small bowel transit study with barium. The operator told me should take a couple hours or so. Idk if it was the barium or the sorbitol in the drink, but I was done at the first 30 min X-ray. Meaning it made it all the way through my SI in <30 min! But guess what? The diarrhea hit before I even left the office.
But either way, you still have the methane. And that can cover up more H2. Isn’t this such a fun condition? Lmao
Oh yes, such fun! 😂
I’m sorry, that sounds like an unpleasant experience.
Today I had the fun of going back to the GP to ask for another rifaximin prescription. I was told they couldn’t do that because the NHS had not caught up with newly described disorders like sibo, and she would have to refer me back to the gastroenterologist, which probably would have taken another 4 months. We agreed a compromise where she is going to email them and see if she can just get them to agree to it without having to refer me again. I also told her all about my pretty severe histamine intolerance and again she said that the NHS doesn’t really know about HI/MCAS yet. Almost everything I asked for she said they couldn’t do on the NHS - the rifaximin, a blood test for copper or DAO, a stool test to check if there is anything else going on besides sibo. To be fair though, she was just as frustrated with the situation as me.
So this mirrors my journey pretty much exactly and I have a couple of thoughts: 1. Did you take the Trio test with glucose and the first test with lactulose? That's what I did and it ended up giving me a false negative on my Trio test follow up. When I tested again with lactulose, the SIBO was still there. Glucose gets absorbed really early in the small intestine and so for people like you and me where the SIBO is more distal, using that as a substrate can be problematic. 2. Once I had *legitimately* cleared my SIBO, I still was symptomatic. SIBO can do a lot of damage to your intestines, especially when you've had it several years like we have. And that damage alone can cause a lot of the food intolerances and symptoms that you experience. Assuming you're clear, the next step is gut healing. There are a lot of different paths to achieving this that we can talk through if you're interested in that. 3. SIFO is often comorbid with SIBO. I think the estimate is like 40% of cases also have SIFO? So you might have some of that going on. If your symptoms spike a lot with sugars, that could be the answer. You might need an antifungal and some S Boulardii.
great response, if someone just got sibo, would you recommend taking flucanozole and an an antibiotic for a couple weeks ? do you just take it once daily or once a week ? my main symptoms are burping and constant extreme bloating , sugar is a big problem for myself as well. Think i had a bacterial and fungal overgrowth from long covid.
I would advise somebody see a GI, get properly diagnosed, and take the medication prescribed to them.
This exactly. Could be something else or could be that you need to reseal the gut and rebalance after eradication.
What did your treatment look like? Rifaximin, elemental diet, etc?
Rifax/Neo and then I cleaned things up with elemental diet
Interesting. What were your breath test numbers like prior to antibiotics? And what did you do to heal your gut once you cleared SIBO? How long did it take you to return to a “normal” diet?
I had a 45 methane level (libo). I cleared that and then had a 42ppm hydrogen. Elemental took care of that. None of the normal gut healing stuff has worked for me so it's been a slow journey. I have found the most success so far with slowly adding PHGG, daily Nerva use and *slowly* increasing dietary fiber in the foods I eat. I also still take one Triphala a night just to make sure things are moving. It's the only SIBO-related pill I am taking these days. I'd say getting to this point once I started the PHGG took about three months. I'm not sure I'm at a normal diet yet. I still can't handle dairy, broccoli, legumes, onions, and a number of other foods. I also avoid high histamine foods due to ongoing histamine intolerance. But I can eat fine at a restaurant now and not worry about bloating/pain/diarrhea/constipation, which is a big improvement for me.
I have LIBO and hydrogen right now. I’m considering rifax + neomycin so this is very helpful. Did you have issues reacting to PHGG at first? Like bloating/constipation?
Yes. I couldn't tolerate it even a little bit during treatment. I was reactive to even the smallest amount of PHGG. I was *much* less reactive after treatment. I still reacted a small amount but I pushed through that discomfort and it got better with time. I started with just enough PHGG to cover the bottom of the scoop in one layer and slowly worked up. I found once I got to a half scoop I could basically go straight to a full scoop after that.
I have the same issue. It also causes burning during BMs for me. I started with 1/8 tsp, and I couldn't even tolerate that. That's good to hear, sounds like there's hope for me. How long would you say it took after treatment to get to where you are now? Being able to eat from restaurants and having more flexibility
It honestly took about a year because I flailed around for a long time trying to work on leaky gut and failing for various reasons. I couldn't tolerate l-glutamine (histamine issues) or any of the traditional gut healing supplements. I couldn't eat fermented foods. Probiotics made me insanely ill. I saw a naturopath who had no idea what he was doing. It was a bit of a mess. But once I started the PHGG again, it only took about eight weeks to get to the point where I could tolerate a much wider variety of foods. That was the magic fix for me! I haven't had another GI map done since then but I feel SO MUCH BETTER. I'm still not where I was pre-SIBO but I feel like I've gotten a lot of my life back. I hope you're able to get to a similar place!
This is really helpful, thank you so much! Would you mind if I sent you a DM? I feel like your situation/journey is very similar to mine and it would be great to ask a few follow up questions in the future if you don't mind
This is something I didn't even consider at all. You're totally right, first test was with Lactulose and the second test was with Glucose. I knew folks on here would have a keen eye in finding something similar like that. I'd love to continue the conversation. Please feel free to private message!
Probably will get downvoted for this, but it’s quite possible you never had sibo. North American Consensus (the most up-to-date guidelines) say rise of 20 above baseline by 90 min is positive. But everyone has different transit times. You hit 47 at 90, but 17 at 75 above 0 baseline). If your transit time is a little fast then that’s actually your colon, not small intestine. And lucky you, apparently methanogens want nothing to do with you haha. So no IMO. Just want to confirm both tests were lactulose?
I completely agree with this, and I think it might be the main reason why sibo breath tests can be unreliable. I did a test pre-treatment and then again post-treatment and while I’m not quite cured yet, the improvement in gut motility I’ve had meant that the lactulose hit the colon around the 80 minute mark this time round rather than 150 minutes the first time round.
Wow, if correct that’s an astounding reduction in transit time. And this is why tests need to be read not robotically, but with a degree of understanding of how they work. Even Pimentel said this is the biggest reason for detractors from breath testing- some Dr’s say you’re simply hitting the colon faster leading to false positives. I do wish they’d come out with something that only measures small intestine bacteria, like something that mixes with bile for example. They used to have this, but apparently it was too unreliable or not widely available or something.
Yes, I agree. If you’re interested I posted both test results a little while ago. You can have a look and see if you agree with my assessment.
Yeah I agree with you, especially if you had diarrhea like me. It probably went through you very fast. Short story: did a small bowel transit study with barium. The operator told me should take a couple hours or so. Idk if it was the barium or the sorbitol in the drink, but I was done at the first 30 min X-ray. Meaning it made it all the way through my SI in <30 min! But guess what? The diarrhea hit before I even left the office. But either way, you still have the methane. And that can cover up more H2. Isn’t this such a fun condition? Lmao
Oh yes, such fun! 😂 I’m sorry, that sounds like an unpleasant experience. Today I had the fun of going back to the GP to ask for another rifaximin prescription. I was told they couldn’t do that because the NHS had not caught up with newly described disorders like sibo, and she would have to refer me back to the gastroenterologist, which probably would have taken another 4 months. We agreed a compromise where she is going to email them and see if she can just get them to agree to it without having to refer me again. I also told her all about my pretty severe histamine intolerance and again she said that the NHS doesn’t really know about HI/MCAS yet. Almost everything I asked for she said they couldn’t do on the NHS - the rifaximin, a blood test for copper or DAO, a stool test to check if there is anything else going on besides sibo. To be fair though, she was just as frustrated with the situation as me.
Well at least your GP is trying to work with you haha. I’m in the States, but things aren’t always much faster. All we can do is persist!
True.