Clarification About C-Diff Testing - desperate for answers

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joedoe34
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Clarification About C-Diff Testing - desperate for answers

Postby joedoe34 » Mon Apr 09, 2018 10:25 pm

I've read on here that the PCR test is fairly accurate and unlikely to give a false negative, however during my year-long treatment, I've had times where I think I have c-diff again (drastically worsened symptoms), test negative, then in a few weeks while I'm still suffering, I do another test and it is indeed positive. This happened once in between antibiotic treatments and another time since my FMT 5 months ago. So this made me suspect that the PCR test may be some sort of threshold test, and that the amount of c-diff in my colon (and specifically the amount that would come out in a stool sample) is fluctuating up and down, making it difficult to get an accurate test and giving me a different version of a false negative (perhaps not technically a false negative under their defined terms, but slightly below a threshold (negative test), only to have it fluctuate slightly more and test positive soon after). Does anyone have info or thoughts on this?

denizz
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Re: Clarification About C-Diff Testing - desperate for answers

Postby denizz » Tue Apr 10, 2018 11:33 am

i think to decide if you have an infection u need sympyoms and a positive test ..There is no test exist that a doctor can tell you if it is negative you are 100 percent free of cdiff or not ..Thats why they dont test to see you are cured ..i was so obsessed to see my son is clear of cdiff and i paid to a private lab out of pocket for pcr tests and his 2 test 2 months after his infevtion was positive without symptoms which is expected than i waited a year and had the test again which was negative ..i was so happy for a moment till i call ped gi and asked her hey i got negative pcr so he is free can i use antibiotics without fear anymore and she said NO ...That moment i decided to end my fight with the unknown end of cdiff ..i am not sure but i guess she said 3 test in a row is more accure but not sure of that bcs i was so overwhelmed what i heard and couldnt concenrate on what she was telling after that NO ... yes negative doesnt mean it is 100 percent accurate once you had cdiff .there is one test which shows damage done by toxins (i think.it is called cytotoxin assay ) to cells of gut but it is not an easy test i guess it is the only one shows active infection and more reliable than that easy toxin tests (EIA)

beth22
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Re: Clarification About C-Diff Testing - desperate for answers

Postby beth22 » Tue Apr 10, 2018 11:46 pm

The PCR is very accurate and picks up a positive even if you are not producing toxin. I have been positive on PCR for almost 2 years, but not with D, so I don't treat. My EIA is negative. However, when I first had c diff, before PCR tests, I would be like you and test negative and then later on positive. It is very frustrating. Are you treating with antibiotics? Some people take something like Questran to bind up the toxins and carry them out.

Lid49
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Re: Clarification About C-Diff Testing - desperate for answers

Postby Lid49 » Wed Apr 11, 2018 1:26 pm

Hi joedoe34
Are you testing positive cdiff after 5 months?

joedoe34
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Joined: Mon Feb 26, 2018 11:59 pm

Re: Clarification About C-Diff Testing - desperate for answers

Postby joedoe34 » Wed Apr 11, 2018 2:30 pm

Thank you for the responses. I just got a new test back and it came back negative, and I believe it was through PCR. I am not sure what is wrong. Every few weeks, I have a terrible week full of diarrhea increased cramps, convinced the c-diff is back, but not showing up on tests. The constant cramps in my upper abdomen that were a key sign of c-diff during the infection have not gone away at all in the 5 months since FMT (levsin and bentyl don't do anything; doesn't seem to be gas). It is not at all connected to food, as I've tried every possible elimination diet and nothing seems to effect the intense diarrhea episodes that last for days. I am wondering if the D or the constant cramps are a sign of another issue

Lid49
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Re: Clarification About C-Diff Testing - desperate for answers

Postby Lid49 » Wed Apr 11, 2018 2:58 pm

I'm in the same situations like you, but I tested antigen toxin negative for cdiff. Positive pcr. Can you take enteragam or questran it will help with D if the test is negative. Ask your DR. It will help.
Lidia.


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