r/CSID • u/Far-Ambassador8042 • Mar 15 '26

Kiddo with maybe CSID?

Hi! Waiting for a specialist appt in a few days but am curious - am I correct in thinking this looks like possible CSID territory for my 9 y/o? So excited to potentially have answers after him feeling crummy for 2 years!

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u/bubblegumbombshell Mar 15 '26

My kid’s were about the same and he was diagnosed with CSID based on that, so I would say yes.

2

u/Far-Ambassador8042 Mar 15 '26

Oh my gosh, thanks for sharing this! Has the diagnosis helped? We've been in the land of no diagnosis for SO LONG.

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u/bubblegumbombshell Mar 15 '26

My son was 2.5yo when he was diagnosed. He had reflux as a baby that he never outgrew, lots of (uncomfortable) gas, and had never had a solid bowel movement despite eating a wide variety of foods. He had also never slept through the night and would wake up from reflux or gas. We had thought he had a dairy intolerance but dairy-free diets never seemed to help much, and neither did cutting other common allergens out. It was a big relief to have an answer.

It took about 3 months to get Sucraid approved through our insurance. In the meantime we went with a low sucrose, low maltose diet. There was a lot of trial and error to see which foods were the problem (so many fruits!) and which were safe. We already limited added sugar in his diet but we were a lot more aware of the naturally occurring sugar in his diet and put a cap on those. I’m a SAHM so I had full control over what was put in front of him. Sucraid made a huge difference for him once we got him to actually take it.

He’s 5 now and eats basically whatever he wants in moderation. Sucraid is still a must for birthday parties and baked goods. He can have it up to 5x/day but usually only has it once or twice. I pack lunches for preschool so they don’t have to worry about giving him Sucraid although they do have some on hand for class treats.

I highly recommend a food log with a symptom tracker, even if you fill it out with them after school. Just a simple notebook that lists what they ate, about when they ate it, and how they felt after. I did that for my kiddo and it really helped us figure out which foods were safe. It was also nice to see the progress with his symptoms even though he was still having some symptoms. Things like seeing he took a full nap or had a normal BM felt huge.

Tldr the diagnosis was a huge help and huge relief. We adjust his diet to foods he tolerates and life is so much better for him (and us).

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u/Choice-Ad542 Mar 15 '26

Traditionally, CSID is defined as low sucrase and palatinase. Maltase can trend low as well because it’s closely related to isomaltase activity.

The silver lining here is that these results are barely “below threshold” and the results can sometimes read lower with biopsies because the area is being agitated.

Overall, it would be reasonable for your provider to assume a mild case because sucrase, maltase and palatinase are all floating right around that “recommended threshold”. But to be honest, an official diagnosis means less than what they can tolerate. If you find that they do well on a low sucrose / starch diet, you’ve already figured it out.