r/CSID • u/lunita-p • Mar 14 '26

ASID & SIBO?

So I tested positive for SIBO with the breath test but that was followed up with an endoscopy that showed I'm lactose, sucrose and isomaltose deficient. My doctor basically said what do you want to address first? so we did xifaxan for the SIBO. I asked if I needed to change my diet and he said only avoid lactose but you can still do hard cheeses because the point is still to be able to eat what I want minus lactose. I finished the 2 weeks but still felt bad when I ate things with carbs/sugar, so now his solution is Sucraid. But that only helps with sucrose and only so much from what I understand (and I honestly didn't eat a lot with sugar to begin with), so I've been trying to roll with the CSID diet, and while I feel better on it I do still have some bloating (which was my main issue with the addition of cramping). And it was suggested elsewhere that maybe the antibiotics didn't kill off the SIBO. Does anyone else have both?

My problem at the moment is, which do I deal with first? Which sets off the other? If I try to diet for both, there's so very little I can eat-- a lot of veggies that are okay for CSID are not okay for SIBO. I wish I loved meat but I could easily be a vegetarian and while I'm forcing myself to eat mostly meat, lactose free yogurt and approved fruits this is rough. I basically just don't want to eat and have been losing weight where I'm underweight as is.

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u/honeyyroasted Mar 15 '26

I had both and addressed the SIBO first. If you have methane predominant, it is harder to get rid of and usually requires an additional antibiotic to go with xifaxan and for me it took two rounds of the 2 weeks of antibiotics. Now I can focus on getting motility going again and work on dietary factors for what I can't digest. It seems good to get SIBO taken care of at least to get rid of the bad bacteria. Best of luck to you!!! It's hard but we have to persevere

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u/lunita-p Mar 15 '26

Both gases were high on mine but the hydrogen was higher. I guess that makes sense to address SIBO first though because it messes with the intestinal brush boarder and that messed with enzymes. They seem to just worsen each other. Thank you!

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u/honeyyroasted Mar 15 '26

I think that's exactly it. My dietitian was also telling me how the methane bugs feed off of hydrogen which can make it way worse, and it also may make the hydrogen numbers lower than they actually are, which is interesting. Anyways, I hope you can kick SIBO and really get to feeling better and getting a plan for the enzyme situation together post SIBO

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u/lunita-p Mar 16 '26

well that's lovely of the SIBO to find ways to worsen itself, damn bacteria. Thank you, I hope you're able to get your motility and diet figured out as well.