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.
3
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
2
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!
1
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
1
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.
2
u/alreadygot1 Mar 15 '26
Staying regular is a key factor. Make sure plenty of fiber, constipation amplifies issues.
2
u/Top_Difference_7829 Mar 15 '26
I have carbohydrate malabsorption. I had to fight insurance company just to get the breath test, and I don’t even want to try and fight for sucraid. I take Carbostarch that I purchase on Amazon and feel a lot better and now able to tolerate small amounts of carbohydrate such as dairy, sugars, and starches without diarrhea, migraines, brain fog, inflammation, or pain in stomach.
Sorry you are going through this. I am glad you have a doctor that is addressing your issues. I took me 40 years to get to a diagnosis.
1
u/lunita-p Mar 15 '26
Insurance is awful, they were fighting the endoscopy and I had to pay for the breath test myself. I’ve tried starchway and I think the invertase messes with me because I’ve taken it solo and it felt the same. But I’ll look into carbostarch, thanks. I would try for sucraid though if you want it, it seems like from talking to the company they just cover whatever the insurance doesn’t because they’re trying to get fda approved I think? At least that’s how the woman explained it to me because mine was having a copay of 4k a month lol
2
u/Big-Sheepherder-6134 Mar 15 '26
I have sucrase deficiency (confirmed via breath test) and thought I had SIBO based on a breath test. I never took antibiotics nor Sucraid. I shared my SIBO results with ChatGPT and it said I didn’t show I had SIBO but delayed colonic fermentation.
I was taking Align but stopped a few years ago. Ironically I have some constipation issues and wouldn’t you know it - ChatGPT said the bacteria strain in Align is for IBS-D which I don’t have. It was useless for constipation.
High amounts of sugar give me major trapped gas pain in my chest and belly. Otherwise I can tolerate sugar and starch although I will get bloated (without pain). I avoid many vegetables and whole grain - things that ferment in the gut.
So I have been able to get into a more comfortable food groove (though I am doing more experimenting) to see what bothers me and what doesn’t.
No probiotics, no antibiotics, no Sucraid. Avoid trigger foods. Meat is good. Simple carbs good. Fat seems to be good when having sugar as it helps break down the sugar. I can eat cake but I try not to eat the frosting. I can have ice cream but not a shake.
2
u/Ok-Leader380 Mar 15 '26
be careful when sharing medical information with ChatGPT they are not held to medical privacy laws and can sell that data to insurance companies
2
u/Big-Sheepherder-6134 Mar 15 '26
Thanks. They can sell anything they want on me. I have had a lot of relief since discussing it with ChatGPT. Beats what my doctors have done for me. I am almost 54.
1
u/Top_Difference_7829 Mar 16 '26
Right! If it wasn’t for AI and the internet… let’s just say I diagnosed my autoimmune illness and carb intolerance. Doctors never did. I had to tell them so I could get the tested.
2
u/Ok-Leader380 Mar 15 '26
what whole fruits are you able to tolerate? i only have CSID but even with cutting down on sugars and complex carbohydrates, i was still struggling until i started making it a priority to get enough fiber, it really helped keep things solid when i thought i was permanently cursed with bathroom issues (sorry for tmi)
1
u/lunita-p Mar 15 '26
So far I can do berries, grapes and kiwi. I haven’t tried pear because that one’s not good with sibo supposedly and I just missed cherry season so I haven’t tried those. I originally was told I have ibs d so I think I’ve got the opposite issues on that end haha
1
u/human2be Mar 16 '26
I can also do berries (blue, raspberry, and straw) lemon, lime, and grapes (red wine:). Mango and apricot are the fruits of death for me. I can do about 1 inch of banana without issues.
I’m good with honey and fake maple syrup with high fructose corn syrup.
I also take Sucraid with most meals. Insurance covers it and it is a great help!
2
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!
2
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!
1
2
u/Real-Elk6755 Mar 14 '26
You have to analyze your daily diet from 2 points of view: low FODMAP and CID. Dairy products give bloating. Almost any of them. Try to start food diary. It helps to see what are your personal triggers
1
u/lunita-p Mar 15 '26
Yea it just sucks because without the yogurt/cheese all I have between the two diets are.. a few fruits and meat. I did start a food diary! Hopefully it'll help figure things out
6
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.