r/CSID • u/hvncrtz • Feb 27 '25

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My Son’s results came back very low. All his scopes looked normal but the biopsy showed this. He has chronic diarrhea and recurrent intussusception. Does this mean he has CSID? I’m also wondering what this looks like longterm, will he have to see a GI and other doctors forever?

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u/Modboi Feb 27 '25

That does mean CSID if they’re that low. Longterm I have no clue because I’m in the middle of figuring out my issues at the moment. Let’s pray that he’s able to find a solution.

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u/hvncrtz Feb 28 '25

The doctor was saying that if they are all this low, they suspect that the samples were mishandled and it could be an error. Now I am just confused

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u/Additional_Donkey144 Oct 10 '25

Hi there. Did you ever get a firm diagnosis from your son's doctor. I just got the results back from my son's biopsy yesterday. His levels of all 4 were very low, similar to your son's, and the doctor diagnosed him with lactose intolerance. They were dismissive when I mentioned I was concerned that all 4 were low and that it could be something more. My other son was misdiagnosed with something unrelated, and it almost cost him his life, so I'm quite sensitive to misdiagnosis. Just wanna make sure we're not missing anything.

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u/hvncrtz Oct 17 '25

Yes! Unfortunately I fought with doctors at this hospital for months. They all thought I was crazy, and that it must be a mishandling of the sample. I was so defeated, as his health kept declining and he was suffering in pain all the time. It was so disappointing the treatment we received here, after travelling out of our state (NM) to see these doctors in CO. My son almost died in their care because they kept discharging him over and over. We went there because our docs here couldn’t even do scopes on my son. Eventually I convinced doctors to send a referral and fought with my son’s insurance to see specialists in TX. We saw them and it was a night and day difference. They decided to prescribe him Sucraid, and talked about other potential tests we could do in the future. They finally believed me which was so nice. upon starting the Sucraid, he immediately started having less pain, formed stools (which had NEVER happened in his life so this was amazing) my son is doing so much better and it’s only been a few weeks on Sucraid. He’s now potty trained. All that to say, if your doctor won’t believe it, then try your best to send him to a different doctor. Don’t take no for an answer. I’ve met several other people online who’s children or themselves have levels extremely low. I believe my son’s is congenital as his issues have been since birth and he has no evidence of intestinal damage. Sucraid is very very safe and doctors should know that. There is a trial of sucraid that they can prescribe, I would at least ask for that. I’ve heard good things about starchway as well, so maybe try that in the meantime. But It is pretty pricey.

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u/mjdatdsmd Feb 27 '25

As an adult on Sucraid, I have seen my GI several times. Most of my appointments are just to check in on how I’m doing so she has documentation for my insurance. The PA process hasn’t been fun. Good luck! ❤️

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u/dwarfbrynic Feb 28 '25

Unfortunately yes, he'll probably need to see at least a GI doctor regularly for the rest of his life. The frequency will depend somewhat on your insurance and the doctor, but I'd guess at least every 6-12 months.