Gross hematuria (blood in urine): Can't find cause

Posted by carolak @carolak, May 13, 2024

I’ve been having gross hematuria for the last 20 days. Very bright red I’ve had blood tests and CT scans,
There is no infection and the scan show nothing. Urologist seems baffled.
There has been significant amount of blood and some clotting nearly everytime pass urine.
Has anyone had this happen?
My red counts are low ( due to blood loss)
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Profile picture for sonieaml @sonieaml

@carolak
My friend was diagnosed with CAD-(Cold A gluten Disease) very rare blood disorder as a result of blood in her urine. She also has Renard’s (finger tips get cold and turn bright red) and lymphoma. Whether all are connected I do not know. You may want to ask your MD to test for CAD. Just a thought!

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@sonieaml
Hi is it a blood test to determine CAD ? Was your friend seeing a urologist to determine this ? I'm about at wits end trying to get some answers !!' Thank you for your response!

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Scroll up to @tobytink reply from 2024…that is my friend’s posting.
The info she shared maybe helpful to you/your MD. Prayers for you and all who are struggling with getting diagnosed!

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Have you seen a urologist for bladder stones. I had undiagnosed gross bleeding in urine for a couple of years until I had a cyscoscooy

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Profile picture for srsidell @srsidell

Have you seen a urologist for bladder stones. I had undiagnosed gross bleeding in urine for a couple of years until I had a cyscoscooy

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@srsidell
Hi and thanks for reaching out
Yes I've had at least 3 scopes, even a kidney biopsy about 3 years ago.. never have found stones !! Never have pain either !! It's crazy frustrating.
Appreciate you ., thanks

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