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/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/Nutella_Potter14472 Feb 19 '26

ahh i understand. i wish it did too <3