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Confused about methane SIBO diagnosis + treatment plan
This may be long, but I am really looking for some insight from others (especially those who may have be in a similar situation).
I was recently diagnosed with SIBO and told I have methane-dominant SIBO, but looking at my test I am definitely Hydrogen dominant too plus IMO. My integrative doctor didn’t seem very confident with my treatment plan and that alone made me feel like this wasn’t a very individualized approach, ESPECIALLY in my complex case.
Here’s where I’m confused: My symptoms do NOT match what I’ve read about methane SIBO at all. I’ve had loose stools, urgency, and go to the bathroom up to 3–5 times a day for the past year or two. Definitely not constipated. Recently I started eating overnight oats, and it’s the first time in years I’m not running to the bathroom constantly. That seems… opposite of slow motility?
The protocol I was given is: Xifaxan, Neomycin, Nystatin, Digestive enzymes, Candibactin AR + BR, Low FODMAP diet (although my sheet is way more aggressive - no rice or potatoes - than actual Low FODMAP diets), cut out all current supplements I am on.
This feels super aggressive, especially all at once. I’m also really concerned about neomycin because of the black box warnings. I’ve seen a lot of people say it made them really sick too. On top of that, I have PCOS and suspected MCAS, long history of gut issues since childhood (food sensitivities, “candida,” etc.), chronic inflammation + nervous system dysregulation, recently developed random rashes that won’t go away, along with hormone imbalance since starting birth control in 2020.. I was NOT told to stop probiotics or berberine (or any of my supplements for that matter) before my SIBO test (which I’ve now read can affect results??) I’m also worried about doing an aggressive low FODMAP because of histamine issues.
Honestly, it feels like we’re jumping straight into “kill everything” without understanding the root cause. And my doctor already said I’d probably need to do the treatment twice, which doesn’t inspire confidence.
My questions:
Has anyone been diagnosed methane-dominant but had diarrhea/urgency instead of constipation?
Did anyone regret doing antibiotics vs going herbal route first?
Has anyone had false SIBO results from not stopping supplements beforehand?
If you have MCAS, PCOS, or hormone issues, did treating SIBO help or make things worse?
Would you pause and retest before starting something like this?
I’m not against treatment — I just want to make sure I’m not making things worse or missing something bigger without figuring out the true root cause.
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Like you I have methane dominant SIBO but have had horrific diarrhea... Have gotten very little help from the medical world. Did a round of Xyfaxin which was terrible. I couldn't digest anything and lost 15 lbs in the two weeks I was on it. The only thing that has helped me is the FODMAP diet, and it has really helped. I have not had any diarrhea for at least 6 weeks.
Have you done a calprotectin test? It measures the amount of inflamation of your intestines and can help know just how affected one is...
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1 Reaction@hallward Im so nervous to start Xifaxan, Neomycin, and Nystatin because I have heard so many people get so incredibly sick from it. Antibiotics are already hard on women's bodies, so I don't need to feel worse than I already do. I have never heard of a calprotectin test, so I will look into it. Have you done your SIBO test again since eating on low FODMAP? If so, has did your results come back better?
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2 ReactionsBe kind to yourself and skip the Xifaxan, Neomycin, and Nystatin for now. They are only treating a symptom and not a cure. I did herbal treatments two times and the effect lasted for 1 week each time.
That set me on the path to trying the low FODMAP diet and carbohydrate restriction. Look up Dr. Norm Robillard's Fast Track Diet, it restricts carbs that ferment readily like pasta, rice flour, juices, some fruit, and of course cakes/cookies.
https://digestivehealthinstitute.org/fast-tract-diet/
The fast track diet uses a point system to rate foods and portions of those foods, sometimes you can eat a highly fermentable food if you keep the portion small. There is a really low cost app for both the Monash university FODMAP diet as well as the Fast Track diet which I find really helpful.
If you do the work you will discover what is causing your digestive issues. After completing the FODMAP elimination diet I found I was sensitive to fructose and fructans at amounts that should be safe under the FODMAP diet, honey is a big no-no for me. When I get a hint of acid reflux (the first sign of SIBO for me) I cut back on carbs and try to figure out what food I ate too much of in the past 3 days.
Hopefully when you find the foods that are upsetting your digestion your rashes will go away. I had a knee rash since early childhood which went away when I gave up gluten. If you have a tendency towards psoriasis peppers and potatoes can cause a rash. This may sound stupid, but if you have sensitive skin be careful with how much laundry detergent you use and skip the fabric softeners. I was getting a rash and it was from my laundry detergent so I cut the amount I use and it went away.
Link to Norm Robillard and histamines on YouTube
You can schedule a phone appointment with Dr Robillard and talk through your issues. I had tried the Fast Track diet and kept my fermentation low in the low 20's for over a week. My symptoms should have resolved, he told me "Something else is going on". He was right, I did the FODMAP elimination diet and found the fructose/fructan sensitivity issue.
Hope something I shared helps!
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2 ReactionsI agree the FODMAP diet is the way to go and using the FODMAP app makes eating and buying the correct foods easier. I also suggest working with a dietician to help understand the illness and diet better. I’m 2 months past treatment and doing well.
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1 Reaction@jontae
I haven't done another SIBO test. I'm pretty sure I still have SIBO. I plan on doing another Calprotectin test to see if the inflammation of my intestines has continued to come down. Not sure if I'll do another SIBO test. Probably a good idea at some point but from what I hear and read many never get rid of SIBO
My baseline at the SIBO test of methane CH4 was 53 ppm and it rose to 79 ppm. Hydrogen was normal and did not change. My GI says this is from constipation. She must have forgotten that I started seeing her due to frequent diarrhea/loose stools with upper right quadrant pain. I followed the prep instructions to the letter. I had my gallbladder removed almost 2 years ago. Recent CT was negative. Scheduled for Endoscopy with US and colonoscopy.
Others with Small Intestinal Bacteria Overgrowth (SIBO) and high methane?
I am tagging @jaki51 and @edloftus who have mentioned both. You mention not having your gallbladder and having a recent negative CT, next up endoscopy and colonoscopy. They may have information to share.
It sounds like you know what you are dealing with. Here is what Mayo Clinic reports about SIBO in case you haven’t seen it:
- Mayo Clinic Small Intestinal Bacteria Overgrowth (SIBO) Overview
https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168
Did your GI doc say how constipation is related to your loose stools and upper right quadrant pain? When are your upcoming tests?
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1 Reaction@jlharsh My GI wants to wait until all tests are in, which makes sense. I had the Abdominal CT last week and the results show nothing but a couple of areas of diverticulosis. The Endo with US and colonoscopy are the middle of June. I had to wait to schedule to get clearance from my new EP cardiologist. I had an episode of afib with rvr and coding in recovery after a recent total hip replacement. I have to go ahead to do the next tests. Thanks for the Mayo article. My GI only stated in the SIBO report that high methane is due to constipation. I am not constipated at all.
@lucyvt Oh my goodness, you are dealing with a lot. I imagine you were already apprehensive about having hip surgery and then added a horrible experience coding in recovery. I am stressed for you as I read your words! Kudos to you for staying on top of managing this process to learn more about SIBO.
Please come back and let me know how you are doing, and what your learn as you go through this process.
How’s your hip doing, and your heart? Do you think all these things could be related, have some type of association with each other?
@jlharsh Thanks for your kind words. It has been a lot of 'stuff' for sure. My hip is great. I had my left one replaced 2 years ago and it is great too - no complications after it so I was totally unprepared for this mess. Having to be resuscitated is very unnerving. I knew I was in afib as I had one isolated episode of it before. The nurse in recovery was ignoring me when I was telling her that I was in afib. Finally, my heartrate climbed high enough that she had to get a dr in to help. Anyway, the GI stuff has been going on a while. I have a lot of discomfort and especially in my right upper quadrant. Lots of loose stools. No constipation. My PCP referred me to gastro earlier this year and the SIBO test was the first one that was ordered. The hydrogen was 2 and never rose. The lactulose they gave me for the test caused horrible diarrhea when I was on my 2-hour ride home in rural Vermont, with only one rest stop available! That was fun. I also have rheumatoid arthritis and am a 2-time cancer survivor, so I am good about advocating for myself and asking lots of questions. My gallbladder was full of stones and there were lots of adhesions everywhere. Not sure if anything is related to my other health issues or not. Oh - I almost forgot - i have heart failure also. I am seeing a PA-C in gastro and wonder if my complications/comorbidities might be too much for her. She is great but I really want some answers.
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