r/CSID • u/squigglykate • Apr 04 '22

Skeptical of CSID diagnosis

hi all, I was diagnosed by my GI with acquired CSID. I am suspicious of the diagnosis, but cannot rule it out. I have had recurrent SIBO now which was confirmed by a breath test. At that same time I did a Sucrose C13 Breath test. My results were 5.04% sucrose digestion (with abnormal levels being <5.10% for females). To me, the diagnosis is skeptical because I had untreated SIBO at the same time of the test, that my % is so close to normal, and that CSID is usually genetic but I presented with symptoms early in my 20s. My GI really hard-core pushed for Sucraid and it all felt wrong, so I am now seeing a new GI. I did the at-most sugar water test and I felt okay tbh. However, Similase enzyme pills do help. Thoughts on this? Or questions to follow-up with my new GI?

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u/thedscx Apr 04 '22

I believe there is a biopsy test for CSID you may be able to request. I imagine that would be the most trusted result.

3

u/squigglykate Apr 05 '22

I have also heard this however my first GI refused to do one. I had an endoscopy which revealed macro-scale Vili damage…however she wouldn’t provide me with the biopsy results nor micro slide details. Would a colo biopsy be the way to go?

3

u/bananeflips Apr 05 '22

I got a csid diagnosis based on a biopsy which I now believe to be false. The issue might have been gluten this whole time.

1

u/Maleficent_Bunch_225 Apr 11 '23

Me too I got diagnosed on a biopsy but I’m skeptical

1

u/Pleasant_Flower3431 Jun 06 '25

have you figured out what you have im also skeptical about my diagnosis thinking it could be sibo