SIBO…did it ever go away?

@h8bigbiz My wife and I both have it and alpha gal. The two seem to go together. They don't do much except avoid the triggers, which we are aware of. The medical community is slowly becoming aware of it. To our surprise, they were totally ignorant of alpha gal down at MDA, although they treat with drugs ending in "mab" all the time...*

A lady dying of a monoclonal antibody drug who had alpha gal was how the disorder was discovered...

@h8bigbiz I am in the mind set that I just don't care anymore. It's become a bad joke since the list of my issues seems to grow now I just laugh. These are just on the digestive side and there are some others things so - now I laugh at it all.
I have never added anything by worrying over it. Simply manage is really all there is.

@dt61 It's gotten harder for me to care also. But even though there's not much time left, I'd still like to get to enjoy a social life again. Not optimistic, though.

I have ibs, and I am having a terrible time with flare-ups, the pain is terrible (trapped gas) The doctors do not know much about ibs. Each case of ibs can be so different. Does anybody have any suggestions. My specialist said the doctors don't understand ibs, it is basically, trial and error.

I have been diagnosed with SIBO, but I never took the antibiotic because it was so expensive and there was no guarantee that it would not come back. But I have another symptom that goes along with it, I have an intolerance to cane sugar. And believe me, I only have to have a small amount for it to cause big symptoms. It causes me to have a lot of congestion which then causes me to have severe headaches, besides having the intestinal uproar. I guess there is no cure for all of this other than avoiding all food that causes bad symptoms. The problem with that is, that there is a whole lot of food that I cannot eat. Anyone else have these symptoms?

@triciadann I was also diagnosed with SIBO, took the antibiotic (I think it was Xiafaxin or something), the antibiotic didn't help at all but cost me $2,000, and I get the same symptoms that you get from cane sugar, only with me it's if I swallow even one grain of salt (or any form of sodium).

Yes indeed, just different triggers. It becomes a long mental list of what I am unable to digest, or very short depending upon a person's ability.

This is a gigantic # of people on Reddit discussing SIBO. If you go there, most people report not being able to cure SIBO with rifaximin, particularly rifaximin alone. I tried it a few times. Never helped me. Many people, including me are now testing/trying an herbal microbial approach. Go to Reddit and join SIBO discussion and you can find more about the herbal microbial approach there. Some people say they have cured their SIBO that way, so I'm in the middle of testing/trying it. I'm 25 days in and have read it can take 4 weeks to 6 months to see great improvement, depending on the severity of your situation. I believe SIBO is a key reason for IBS. For many, they go hand in hand. I never had IBS before SIBO. Good luck to you!

@triciadann
Your body's inability to digest cane sugar might be an indication of a broader issue: ASID (Acquired Sucrase Isomaltase Enzymatic deficiency), or CSID (Congenital Sucrase Isomaltase Enzymatic deficiency). My SIBO started in summer 2024. I had a colonoscopy and an endoscopy. The endoscopy revealed that my brush membrane was damaged and that I had developed ASID (Acquired Sucrase Isomaltase Enzymatic deficiency). That is, my body can no longer properly digest these forms of sugar). So, it might be more than just cane sugar that your body can't take. I suggest, if possible, getting an endoscopy to see if there is evidence you have ASID or CSID. (They're really the same thing, since if you develop ASID, a genetic predisposition that might have been latent all your life suddenly gets activated.) There are a lot of helpful websites out there that will help you experiment with diet. The diet has some overlap with FODMAP but is different in crucial ways.

Also, in general: sugar feeds the bad bacteria in your gut and is to be avoided whether you have ASID or not.

After almost 2 years of being sick with the SIBO I'm now (cautiously) in a really good place, with less gas and pretty much normal motility. I also recently did one course of the Xifaxin and about a month after I finished it, I had a pretty bad week that I believe was a "die-off" of the SIBO and have been doing great ever since. Even my quite terrible hemorrhoids have shrunk.Of course, I don't yet know if my SIBO is permanently cured. And I remain on my diet at the moment (which is, I won't lie, quite a hassle) since I don't know if the damage to my brush membrane is permanent.

Everyone is different and experimentation and keeping a diet/symptom log is a really good idea. Other things that it really helped me to cut out of diet: all fermented foods, probiotics, and whole grains and cruciferous vegetables (e.g., broccoli). I'll put in a big plug here now for sour grain bread! Very digestible. Also, my problem was more constipation than diarrhea, so Miralax once a day and even a nightly low dose senna has done wonders. Addressing some pelvic floor dysfunction has also been a game-changer. (Check out online videos about the "right" way to poop.)

Everyone is different but diet is crucial, I believe.

@weathergirl15
Reddit is a great resource. I've gotten a few really important tips there. One thing I would say is that IBS can sometimes set the stage for SIBO. Motility issues can contribute to an environment conducive to small intestinal overgrowth. Though IBS is sometimes used as just a vague catch-all by some doctors for intestinal/motility issues. But some are willing to at least run diagnostic tests (e.g., colonoscopy, endoscopy that can pick up damage to the brush membrane, MRI defocography that might indicate pelvic floor problems). These tests can provide you with much useful information and help cut through all the confusion.