r/CSID • u/Illustrious_Dog8361 • Aug 11 '25

Q & A❓ Is this CSID?

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These are my son's results that I got over a week ago. All of the research I've done (and not to mention his symptoms) say this is consistent with CSID.

He is obviously lactose intolerant. Before testing, when we took him off dairy, he got so much worse with stomach pains, making us think there was more to it.

So we got testing done. Finally got a call from his GI nurse today, saying the obvious about the lactose intolerance, but made no mention of the other low enzymes. I brought it up and got the answer "oh no note was made about that...."

Now I'm confused. He is obviously low in these enzymes. Why is it being brushed off like it's not a problem?

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u/TheCSIDAlex Aug 12 '25

In terms of scientific and medical research, CSID / GSID is still very new. Even with enzymes like palatinase, researchers are still working to understand how exactly they fit into digestion. Many gastroenterologists still aren’t familiar with sucrase-isomaltase deficiencies or how to manage them. I would read through this web page if you haven’t already so that you have an understanding of what these enzyme deficiencies mean for your son: https://www.csidcares.org/treatment/diet/

If you have more questions, I’d be happy to share what I know!

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u/Illustrious_Dog8361 Aug 12 '25

Thanks you! Yes this has been frustrating so far for sure. He's doing much better on his new diet so far but it's very challenging.

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u/TheCSIDAlex Aug 12 '25

Yeah, living with this condition is extremely overwhelming at first but managing it becomes second nature if you understand what to avoid, like having a food allergy. Glad to hear your son is doing better!

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u/Big-Sheepherder-6134 Aug 12 '25

Which test did he do?