Diagnosed via colonoscopy, but EIA negative?

[MSpector]

Hello. 35M here, diagnosed three days ago after a colonoscopy for rectal bleeding lasting several months. However I'm a bit confused. Let me give a brief history of my situation first:

3 years ago: Colonoscopy due to minor rectal bleeding, came back 100% clear.
9 months ago: Bleeding came back, slightly worse than before.
3-4 months ago: Developed alternating C/D. D was watery but I don't believe I ever hit the 3x/day for 3 days point. Was having mucus at the worst point, but that has since cleared up.
2 weeks ago: Asked for another colonoscopy despite protco opinion that it wasn't necessary (to alleviate anxiety over cancer, etc).
Also 2 weeks ago (just after colonoscopy appointment made): BMs finally returned to normal consistency (formed), bleeding also resolved outside of 2 isolated incidents.
3 days ago: Had colonoscopy, was told as soon as I woke up that it was C. diff. Was given Flagyl prescription, no follow-up appointment or further instructions.
2 days ago: Was looking through my health records via provider's online portal and saw that the EIA test results were in. Negative for GDH and toxins. Also, WBC and Creatinine on last blood test (less than two weeks ago) were normal.

After doing a lot of reading (here and elsewhere) and seeing that formed stools generally mean no infection, and given that my EIA test was negative, I'm confused as to why the procto immediately jumped to C. diff as the diagnosis (especially before the EIA was even sent out). He didn't go over anything with me (he was literally out of the room within a minute of me waking up after the procedure, and that was the last I saw of him) so I don't know what he saw on the colonoscopy. All I know is that my EIA is negative for GDH and both toxins, my BMs are formed and blood/mucus-free, and yet I'm sitting here with a diagnosis of C. diff and a bottle of Flagyl I'm incredibly apprehensive about taking due to the side effects. I would love to hear any opinions/thoughts about this.

[AllisS]

Hi and welcome to the site. Please read our guidelines for new posters in the first forum.

I'm unable to answer any questions about the lab-test results. (Another of our moderators will probably come along to address them.) What I can tell you, however, is that C. diff should be treated on the basis of symptoms, not test results. Since you're not having C. diff symptoms, I agree that the diagnosis is puzzling. You're certainly owed more of an explanation than you were given (which was none, according to your account). Furthermore, Flagyl is no longer the recommended treatment for C. diff. It sounds as though whomever prescribed it for you is ignorant of that fact. I'd hold off on taking it.

[Bobbie]

Welcome to the site.

Agree with Allis about taking Flagyl.

Several of our mods are more skilled at interpreting test results. Am sure they will be weighing in.

Sounds as tho us are doing well, Hang in there,

[georgina]

The negative GDH was before treatment or after you started?

[MSpector]

georgina wrote:
> The negative GDH was before treatment or after you started?

Before treatment. There's actually been no treatment yet. I got the Flagyl filled, but haven't started taking it.

[georgina]

I am wondering how did they came to a conclusion that is really Cdiff that you are dealing with , during the colonoscopy. Did they see lesions on the intestines or colitis , or what? This is very weird . You do not have the classic Cdiff symptoms , actually you have formed stool , and also your tests were negative, yet they saw Cdiff.How?
If i were you , i would get a second opinion from another GI or infectious disease doctor , someone who specializes in Cdiff , before starting ANY treatment for Cdiff.

[roy]

During the colonoscopy your Dr might have seen plaque like areas in your colon (psudomembronous colitis) they are classic indications of c.diff but CAN be caused by other diseases.
If a GDH test has ruled out c.diff then its 99.9% certainly NOT c.diff!
Did they take any biopsy samples to test for c.diff?
If visual indicated c.diff a biopsy is taken to confirm it.

We cant diagnose by internet but from what you describe and from your test results you almost certainly have been misdiagnosed.

[MSpector]

roy wrote:
> During the colonoscopy your Dr might have seen plaque like areas in your
> colon (psudomembronous colitis) they are classic indications of c.diff but
> CAN be caused by other diseases.
> If a GDH test has ruled out c.diff then its 99.9% certainly NOT c.diff!
> Did they take any biopsy samples to test for c.diff?
> If visual indicated c.diff a biopsy is taken to confirm it.
>
> We cant diagnose by internet but from what you describe and from your test
> results you almost certainly have been misdiagnosed.

I don't know if they took any biopsies. I'll have to make some phone calls on Monday to try and find out. Usually when I have a procedure done at the local hospital, they put the report up on the online patient portal. Colonoscopies, weirdly enough, are the exception (found this out when I tried to find my 2016 colonoscopy report on there only to discover that it wasn't there).

[MSpector]

I went to the hospital and got the colonoscopy report from the medical records department. It does say that pseudomembranous colitis was found. And at the end of the report, it says this:

"Treat as c. diff infectious colitis until proven otherwise"

Thoughts?

[roy]

Yes
The follow up test HAS proven otherwise!
The diagnosis and medication MUST be reviewed because its wrong!

[MSpector]

Well, I talked to the procto today (on the phone for about 15 seconds, I had just woken up and wasn't really able to adequately voice my concerns beyond the message I had left with his receptionist the previous day) and he still wants me to take the Flagyl anyway. And since the nearest gastro I could get a second opinion from is like 40 miles away and I don't have reliable transportation, I guess that's that. Gonna take two weeks of Flagyl I probably don't need. Sure would be nice to know for certain what the cause of this pseudomembranous colitis is, but oh well. Who knows, maybe the tests were false negatives (even though GDH is known to be incredibly accurate) and it really is C. diff. Wish me luck, I suppose.

(Oh and the real kicker? When I talked to the receptionist yesterday, she thought it would be a good idea for me to come in and talk with the procto next week and made an appointment for me. When he called today, he told me to just disregard that and only come back if my symptoms return. Yeah ok cool thanks I guess.)

[roy]

Why even consider treatment (with the wrong medication) if you dont have symptoms?
IF you had c.diff and it's bad enough to cause visible damage (p. colitis) you would be severely sick, probably in hospital and on IV fluids!

[MSpector]

Honestly, because there's still that lingering worry that maybe it is C. diff in spite of everything, and the p. colitis will go away if I take it. I've spent the last week reading way too much about how dangerous p. colitis can be, and I've gotten myself extremely worried about it. Because even if I dispute the C. diff part of it, I can't really dispute the colitis. In short, I don't really know what else to do.

[roy]

I would be walking that 40 miles to get a second opinion!

[Ril]

I have to speak up to echo what Roy said. There are some things in life that are priorities. Getting this right is one. This guy is very cavalier about the whole thing, not so knowledgeable that he didn’t do a biopsy, ordered Flagyl, doesn’t discuss symptoms etc etc. get to a GI or ID dr no matter what it takes. This is your health!