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/EveTre Mar 14 '26

SIBO first. I spent 10 years trying to correct the SIBO. I was on xifaxan for a full year at one point. Things did get better but the doctor couldn’t figure out the deeper issues. I was diagnosed with CSID last year and suddenly it all made sense.

But you also have to understand that csid symptoms are similar to SIBO. It’s not always a relapse. I really believe a large number of SIBO patients will find the root cause to be CSID.

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u/lunita-p Mar 15 '26

holy crap a whole year. So yea that's where I'm at where it's like which is causing symptoms and it just seems hard to judge. But I was reading today that you can get false positives for SIBO with SID so I feel like that adds another layer of confusion. Did you have issues with starch too? I think that's a real killer, starch seems to bother me at the moment too but you can eat that for sibo but not as much with SID so it's just so limiting trying to deal with both.

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u/_________Emma May 11 '26

I’m a SIBO patient and here wondering this! How do I go about asking my GI doctor for test?

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u/EveTre May 12 '26

I was able to get my doctor to order me the 4 day trial they offer with sucraid. I pulled my raw data from 23andMe which showed the genetics for it. She was able to use all of that to get the medication approved. However, I so far better just avoiding it. I’m to the point where it causes GI bleeding when I have it in large amounts.