My C-Diff is negative but could it be a false negative

[ttpelrine]

Hey everyone it has been a while since I have been on here. I have decided to hold off on surgery as the surgeons also agree on holding off. I saw my GI doctor who sent me for more blood work and stool sample. The stool came back negative but I know I still have it. I tested positive a month before and was given no treatment for it so is it possible for it to be negative now? I am still having all the signs and symptoms of the c-diff. I am also going for another colonoscopy. I was wondering if anyone has had similar cases where it came back negative but it was really false. Well it has been over two years now and I am very skeptical. Even my protein is low from my blood work because I am so limited on what I can eat without suffering. I look forward to hearing everyones comments that could shed some light on this.

[Sheila1]

Hi Tammy,

Good to hear from you again, except wishing it was better news.

Like you, I tested negative about a month after testing positive (almost 2 months after I finished the Vanco). I knew I still had it too. I was on Questran though so there was some discussion as to whether the Questran could mask the toxins, the general concensus was that it probably could. Now 2 months later and 2 months off of all medicines, I tested negative again. Though sometimes I know I still have bouts of small 'outbreaks' of it (by the odor, mostly, now). There was some more discussion at the time about the level of toxins - if the titres are very low it would likely give negative results but could still cause issues.

The colonoscopy is a very good idea, it can show if there are any other problems going on besides the cdiff, and may provide a clue for further treatment.

Have you talked to your doctor about other/follow-up treatments? Miight be helpful to read this article and see what your doctor thinks of any of the additional treatment plans:
Dr. Fordtran, Baylor Univ. Article The 'chaser' method of using Xifaxan has been shown pretty successful in the recent studies.

Let us know how you are doing, you've had a long and rocky road these last few months.

[Christina]

I also had several negative tests results in between relapses, mostly at the beginning since my new Dr. didn't retest unless I was actually relapsing. There were at least 3 different occasions were I was tested off of treatment 2-3 weeks out and got negative test results only to relapse and test positive 2-3 weeks later. Also, after my last round of Vanco which was in August of last year I tested positive 4 times and was still somewhat sick. After my final IVIG in October I was still testing positive again in Novemeber. I got very sick again in January of this year and tested negative but I am somewhat skeptical of the test results as I only turned in one sample when normally I turn in all 3 different c-diff tests .
Also, the test was not done at my sickest point. I believe possibly if I had tested when I was very sick that it may have come back positive but things finally resolved and I have not had any similar issues since.

Also, the labs can make errors as well. I had one occasion when they called in a negative test result to my Dr. and the following day they called back to say that the test was read incorrectly and when they rechecked it it was positive.Thankfully, I always started treatment as soon as I had my sample collected so things were under control.

If you are still having symptoms the colonoscopy should be able to tell what is going on so that you can get the proper treatment.

Good luck.

[Bobbie]

Tammy,
See FAQ-Tests for info. on themost accurate test results. From your post, it sounds as though you've been off meds. for quite awhile -- all testing (including colonscopy) should be done when off meds. for 10 to 14 days.

I, too, had many false negatives -- any only 2 or 3 positive tests during my lst 4 yr. bout with C. idff. This was years ago, however, & testing has improved.

Also, if the GI does biopsies with the colonscopy, they might tell a lot.

When you do have surgery, discuss using the least broad spectrum antibiotic as possible if the surgeon feels an antibioitic is absolutely necessary.

Good luck.

[ttpelrine]

ya this will be my 6th scope in the past two years hopefully this one will give them more answers. The biopsies kept coming back inconclusive but I was also on steroids so now that I am off maybe it will show something different. Also my GI doctor is going to look into finding a different medication for me if my c-diff flares up again. The stool sample may have been negative but I have had the c-diff for over two years and I know it is still there. I am also on Questran so maybe you are right that it could be masking it. Thank you Sheila, Christina and Bobby very much for your input. I hope you guys are doing well. It has been a rocky road but I am still trying to stay positive. On the bright side I am not having any severe flare up where I am going 50-70 times a day. I am sitting at 10-15 most days with a few days I only go 5 times. So I guess it could be worse. Thanks again everyone and I will try to be in touch and stay on the site a little more. Still trying to learn as much as I can. Tammy P