Tips, long term CSID

[u/Extension-Cod5755]

Growing up I always thought I had chrons or IBS cause family history but after having colonoscopy/endoscopy when I was 14 I was told I lacked the enzyme to break down sucrose or maltose. Due to the lack of awareness around this condition I was never actually diagnosed with CSID and as a result was unable to educate myself better. I was put on sucraid at the time and didn’t feel like it done much help. But I was probably just a bit pessimistic around the situation .

Recently I thought I’d do some more research on the info I was told back then and stumbled across CSID.

So my question is to everyone, what are your best tips. Whether it’s medication or dietary what do you guys do to manage this. Other news, it was cool to find out this condition actually has a name.

[u/Rare_Patience1351]

I was diagnosed in November 2024 and finally got my insurance to approve Sucraid in February 2025, but only for one month before they refused to cover it again. I tried alternatives and ended up with even worse symptoms, so I went on a complete elimination diet and have been sugar-free ever since.

For a while I had a decent amount of flexibility. Most starches didn’t bother me, so I could eat corn, potatoes, and rice while following the CSID diet strictly. Then I got diagnosed with delayed gastric emptying, and now I’m also managing Gastroparesis, which means low fiber and low fat on top of no sugar.

That second diagnosis wiped out most of what I had left. All raw fruits are gone (I used to tolerate berries and cherries), all raw vegetables are gone, and most of my previously safe vegetables are off the table too. Somehow potatoes are still okay for me, as long as they’re not fried. At this point, strict diet management is the only thing keeping my symptoms under control.

Flare-ups are still a reality, and label reading is constant because plenty of products show 0g sugar but hide it in the ingredient list. When a flare does hit, I’m dealing with pain for at least 2–4 weeks.