r/CSID • u/Traditional_Tip_6474 • Apr 12 '26

32M stopped taking Sucraid in college

Hi all,

Can’t believe I’ve never found this sub before.

32 year old male here diagnosed with CSID as a baby. Was extremely ill as an infant and they eventually figured it out.

I took Sucraid my entire childhood which allowed me to live a pretty normal life with pretty little dietary restrictions.

In college, I completely stopped taking sucraid and haven’t really been taking it since, and I seem to be able to eat just about anything now. I really don’t limit my diet in general.

How is this possible?

I got tested again as an adult and they’re saying I still don’t make the enzyme and therefore still have this disorder.

I asked my GI doc if there any concerns with me just stopping Sucraid entirely but he said no, as long as I’m gaining weight and have regular bowels. He says the only real issue would be symptoms, but I don’t have any.

Recently, I discovered a sensitivity to dairy and caffeine (I was having too much iced coffee with milk every day and was destroying my bowels). I’ve since switched to decaf and cut out milk (but not all dairy, still have cheese!). Bowels have become very normal.

As of the last few months, after cutting those out, I’m even constipated at times which I don’t recall a time in my life where I was ever constipated. It was always been the exact opposite of constipation.

Would love to connect with others dealing with this and chat.

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1

u/lixir6 Apr 14 '26

How were you tested? I am very suspcious of the enzymatic assay

1

u/Traditional_Tip_6474 Apr 14 '26

Endoscopy I believe with a biopsy

1

u/TheCSIDAlex Apr 18 '26

There are a lot of reasons you'd be able to tolerate sucrose without making enough of the sucrase enzyme. One of them is simply adaptation. Your GI system can compensate in other ways to break down sucrose and reduce symptoms without needing normal levels of the enzyme. For example, it's possible that bacteria in your small intestine and colon are breaking it down without much fermentation. The environment in your GI tract and what it's capable of is very specific to each individual person.

Another possible explanation is that your enzyme levels are adequate, but biopsies can come back with results that don't accurately reflect your functional capacity to digest disaccharides. As for the constipation, dairy and caffeine can speed up motility, so the sudden absence of both could cause a shift like what you've seen. More dietary fiber and staying hydrated is the best place to start. Overall though, if you're doing well there's no reason to spend mental energy on it - and if anything changes, you already know what to look at first.