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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