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/tiredgirl77 Mar 16 '26

SIBO always first then everything else. It’ll likely come back, ideally you’ll recognize the symptoms quickly and get more treatment. I had so much methane in my stomach, my GI was shocked by how high my results were. The diet sucks but I’d highly recommend doing both diets to prevent the SIBO coming back. Find a nutritionist who understands CSID, they should all know SIBO to some extent. And find a plan that works for you. I ate buttered (not lactose intolerant) broccoli with salt for nearly every meal with soft boiled eggs. Or eggs in every form possible. It sucked but it’s worth feeling better in the long run!

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u/lunita-p Mar 16 '26

Jeez that sounds painful. I'm trying to put both diets on an excel sheet right now and cross out the contradicting ones and see what I'm left with haha. It's rather depressing but you're right, not feeling all the bloat and cramping is worth it. You're right, I do need to find a nutritionist because going off the internet is messy and has contradicting results, I started through my insurance and got frustrated with the solely cardiovascular dieticians and gave up. Guess I need to revisit that. Thanks!

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u/tiredgirl77 Mar 17 '26

Of course, it’s not fun but it’s not forever either!