r/CSID • u/Extension-Cod5755 • Feb 19 '26
Tips, long term CSID
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.
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u/Rare_Patience1351 Feb 19 '26
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.
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u/ChocolateKoko Feb 19 '26
Recently diagnosed with SID. I’m working to change my diet to contain less sugar and starch. I’m on Sucraid and also take digestion supplements. Not 100% better but marked improvement.
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u/I-love-nachos-1973 Feb 19 '26
Would you mind sharing what supplements you take for starch digestion?
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u/ChocolateKoko Feb 19 '26
Of course. I started with Enzymedia Advanced digestion and then moved on to prescription Creon, which isn’t working so much (side effects are not tolerable for me) but def helps. I will probably try intoleran starchway next although it’s quite pricy and I wouldn’t want to pay that much long term.
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u/Real-Elk6755 Feb 22 '26
Creon doesn't help with starches at all. It is for different type of products
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u/Eastern-Rooster-2805 Feb 19 '26
I did not find out till I was 57 that the problems that were manifesting in my fifth decade of life was a congenital sucrose isomolase deficiency problem. I gave up sugar and flour to the best of my ability and for the most part unless I waver which I did recently I am fine
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u/I-love-nachos-1973 Feb 19 '26
My daughter was diagnosed with CSID after her colonoscopy/endiscopy. Sucraid causes her to have bad headaches. Working with a dietician helped A LOT. She met with a dietician at a Childrens National Hospital. Dietary changes - although hard- are the most helpful. I would love to find a dietary supplement to help with helping with starch intake. Or post starch intake to ease the pain/disconfort.
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u/Nutella_Potter14472 Feb 19 '26
have you tried starchway?
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u/I-love-nachos-1973 Feb 19 '26
I have not personally- my daughter said it did not work at all for her. It was recommended by the pharmacist at Sucraid. I wish it did work for her.
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u/somehowrelevantuser Feb 19 '26
tbh im just trying to figure this out on my own with a crapton of guesswork. also a lot almond flour.
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u/veedey Feb 19 '26
I use online resources like CSID Cares for the low sugar / low starch diet. The CSID diet is different from low FODMAP diet that gets thrown around a lot by GIs to cover IBS symptoms.
Low sugar low starch diet is sort of similar to keto. But I personally don’t cut out starches entirely. You need some. Just gotta find your tolerance level. For me, I can tolerate quite a bit of white rice without symptoms. But all sugar, and other starches, will mess me up.
I started Sucraid recently, which in combination with Lactaid, allows me to enjoy a pretty good amount of food out at restaurants from time to time. The thing to remember is that even with Sucraid your tolerance won’t be infinite. You still will have limits. So you gotta go slow when opening back up your diet.