Can positive toxins be a false positive?

[CorinneD]

Hi all,

Is it possible that the A and B toxins as such, not just the genes for the toxins, be false positive for a while after antibiotic treatment? If yes, how long would this period be? I am asking because I keep testing positive for the presence of the toxins and I have lingering symptoms, but I also have other complicated issues which might cause these symptoms. As such, my doctors find it rather hard to tell which exactly is the source and so we are in a bit of a deadlock.

Thanks in advance.

[Jodiekee]

I dont know the answer, but am curious as to what issues you are having.

[roy]

C.Diff as a disease depends on the host response to the toxins.
Some people can have a bucket full of toxins but because their body does not react to it there's no symptoms and no disease.
Vaccination will one day make this possible for everyone.
Diagnosing c.diff is not as easy as testing.
First a Dr must look at classic symptoms and recent health history.
If the Dr suspects c.diff they test for it.
No Dr should look at test results and blame lingering symptoms (mild) on a positive test.

[CorinneD]

Thanks for the answer, Roy.

Jodiekee, if you really want your question answered, you're in for some reading :) Here goes. I am female, 42, and I live in France. I have a rare form of refractory celiac disease, with atypical manifestations. This translates in damage to my small intestine and digestive symptoms such as pain, loose stools etc. due to severe intolerances to most foods. Meds don't work, but so far I have been able to heal and keep symptoms at bay with an extremely restrictive diet - for the past two years I have been eating exclusively beef, since this is the only food I tolerate.

At some point last year I started having sporadic episodes of diarrhea, which would last for about a week and would resolve on their own. Trying to figure out what's happening, this February my doctor did a stool test, which came out c. diff toxins negative, but the genes for the toxins were positive. My stools were normal at that particular moment, but calprotectin was over 1000. I was put on a trial course of oral vancomycin.

This triggered watery diarrhea from the very first dose - which went to 10+ stools per day with occasional incontinence. Doctor advised I should struggle to finish the course, which I did. Afterwards, the diarrhea didn't go away, but gradually diminished over the next few months to 3-5 watery stools/day. Stool test after vancomycin - toxins positive, and nor just the genes. I was put on fidaxomicin (Dificid) - no effect whatsoever, positive or negative. Stool test after fidaxomicin - toxins positive. I have done two more tests in the meantime, still toxins positive, so my doctor recommended me for an FMT.

However, the doctors who are supposed to do it asked for a CT scan first to see if there are complications in the colon. The result - surprise! - no sign of colitis at all, but massive inflammation in the duodenum and jejunum. They told me that someone with an intact colon cannot have c diff in their small intestine, or at least not exclusively. So they are not sure at all if my symptoms come from c diff or my basic illness. I will have a jejunoscopy next week with biopsies to see what's going on. But anyway, that's why I was wondering if my positive toxins can be false positive. I suppose they can and that only make things harder to figure out.

Sorry for the novel! :)

[roy]

The problem with C.diff is that the meds cure it but it comes back after meds are finished
It's almost unheard of that c.diff does not respond to treatment.
If vanco or dificlir does not resolve the symptoms while your taking it then its unlikely that c.diff is causing the symptoms.
CT is not very useful in diagnosing c.diff, the most it would show is a thickening of the colon wall in severe cases.
Hopefully the scope will give a better idea of what's going on although that procedure is not normaly used for diagnosing c.diff.

[CorinneD]

Roy, thanks a lot for your input. I don't know, I've been reading several posts around here where people didn't improve on antibiotics. It is very likely that I had a hypersensitivity reaction to vancomycin, I react to anything. But it did give me classic c. diff. symptoms too and the toxins only turned positive after I took it.

This said, my feeling is that I am having symptoms because of both causes, that the c. diff. and my hysterical immune system are involved in some sort of vicious circle ballet. I cannot help wondering if my tolerance to foods would improve if I didn't have c. diff. at all in my body.

As for the doctors, they asked for the CT to check the state of my colon with a view to doing an FMT by colonoscopy, as in to see how carefully they needed to move in, but not to diagnose anything. The scope is not meant to diagnose c. diff. either, it's to check the nature of the inflammation in my small intestine, which they do not believe comes from c. diff. I think they are actually moving away from the hypothesis I still have CDI - that's making me quite uncomfortable, but well.

[Jodiekee]

Some people are so lucky and take one or two rounds of meds and are just fine. For me vancomycin and flagyl have completely destroyed me. My gut feels worse now than when I was having 20+ WD a day. I also did the strict carnivore diet for 1 week straight and felt slightly better but the greasy meat was getting to me. If I could bbq all my meat maybe I could do it longer.
I wish you well. Keep us informed. Your case is interesting.

[beth22]

I think it is good they will take biopsies. You never know if there is some other issue. I had biopsies of the duodenum and doctor was looking for mast cell activation disease, h pylori, and other things. Vancomycin made me feel worse too in the long run. I got worse diarrhea on it too.

[CorinneD]

Thank you both for the good thoughts. Jodiekee, the carnivore diet is indeed a drag. I only do it because I can eat nothing else, not even in very small quantity, without triggering my symptoms. On the upside, it might also be the thing that keeps the c. diff. in check to a certain extent, perhaps because it's zero-carb.

I am not very positive about what they will find at the scope. Most likely my refractory celiac anomalies are back (specific types of lesions and immune system cells) and then they will put me on steroids which have never worked so far, because they have no better solution. But well, I'll let the doctors do their thing and if their strategies don't pay I am considering doing a series of FMTs in a private clinic, to see what that gives.

[Jodiekee]

Any updates?

[CorinneD]

Hi Jodiekee,

Thanks for asking. Still in a deadlock: the biopsies didn't show anything wrong whatsoever in my upper digestive tract, the mucosa is completely normal. They've checked for a lot of things, not just your regular H pylori or villous atrophy, they included things like amyloidosis and eosinophilic enteritis. Afterwards, my GI doctor reviewed the CT scan with the radiologist. There is no doubt that there is wall thickening throughout my stomach, duodenum and jejunum, as well as swollen lymph nodes in the mesentery. They have forwarded my file to (yet another!) GI professor, who looked over it and opined that the problem is _on the outside_ of the small intestine and recommended an exploratory laparoscopy. As far as I have researched this is unheard of and so I am reluctant to submit myself to yet another even more invasive procedure.

My local GI is convinced this is all c. diff, but then she is no specialist. She just says positive toxins + symptoms = active disease. However, she cannot force the hand of the doctors who can do the FMT, and who think that I do not have an active infection, because of the CT scan and my complete lack of response to antibiotics. So now, this being France, we're waiting for everyone to come back from holiday so that they can confer and decide when and if anything will be done about me. Most likely, nothing will happen before September. In the meantime, I keep having 3-5 liquid stools a day and slowly but surely losing weight.

I am quite determined to go to a private clinic abroad and do a series of FMTs by enema (this is the only option available for me at the moment), with the risk of feeling worse afterwards. However, for logistical reasons this will be impossible for me to do before September.

[CorinneD]

Finally an update to this post. The surgeon who is supposed to do the exploratory laparoscopy will not operate on me until I have been decolonised of c. diff. I don't know why he won't, seeing that most doctors seem to believe my symptoms do not come from c. diff. They put me on fidaxomicin again in August, but it was the same thing - no effect whatsoever on my symptoms, positive or negative (just saying, because it's such a relief when something, anything doesn't make me worse!), and the c. diff toxins are still positive.

As such, I will eventually have an FMT. The ID doctor I spoke with told me they are actually hopeful it might resolve (at least some of) my symptoms, even if they do not come from c. diff, considering that my as yet undiagnosed problem is most likely inflammatory/autoimmune in nature.

The FMT is scheduled for this Friday. They don't want me to take antibiotics before, since they have no effect, and unfortunately this hospital does it by enema - I would have preferred by colonoscopy, but I have no say in it. Oh well, FMT enemas have been known to work too, so I can only be hopeful that it does _something_ in my case. I'm not expecting miracles - actually I can only hope it will not make me worse, but it would be nice to see a little bit of improvement. The thing is I haven't had solid stools since March, I've been eating only beef for two and a half years and a more and more restrictive diet since 2017, so well, I'm starting to run out of patience.

[beth22]

The enemas work too. I know people who have done them and I myself have done them.

[CorinneD]

I am happy to say that two weeks after my FMT I am doing really well! The watery diarrhea has stopped and in the past week I've had mostly solid stools - it's still strange to see them after 7 long months of WD. I still have other abdominal symptoms, like bloating, gas and a constant burning feeling throughout my belly. And, unfortunately, I still cannot eat anything else but beef, not even in bite-size quantities - I get very bad pain and loose stools. But well, I am quite hopeful that c.diff is gone. It seems it was the bacteria causing the diarrhea after all, not my basic disease.

I'm supposed to retest for c.diff. after one month and after two months. If toxins are negative, but I am still symptomatic (as in, food intolerances), I will probably redo the scan that showed inflammation in the upper digestive tract and the mesentery to see if the laparoscopy is still in the books.

Of note, I did the FMT by enema (20cm tube) with no prior antibiotics and NO laxatives. Their protocol only included a low-residue diet for at least 100 days, which I found very weird. I obviously qualified with my long-term beef-only diet. And while I was happy that I didn't have to do the colonoscopy prep, which usually gets me sick like a dog, I was uncomfortable with not doing any prep whatsoever. So I took it upon myself to fast so as to have an empty colon - no food for 24 hours, then no water either for the following 6 hours before the procedure. I held it in for 6.5 hours and I didn't eat during this time either, only had some water, so as not to trigger peristalsis. At any rate, I'm quite thrilled that it worked!

I will keep this post updated if I have significant news.

[BetsyS]

I just saw your thread. The description of your celiac and CDiff sounds very much like what I've been going through the last three years, particularly the vicious cycles.

I caught CDiff almost three years ago while recovering from a hemicolectomy for cancer and have had non-stop WD since. My ID and GI doctors say I am colonized, and said the chronic D was caused by a combination of preexisting IBS, shortened colon/small intestines and damage from CDiff. They blamed the cyclic bouts of severe D on mild CDiff because I am colonized. I was never tested again because they cleared up on their own, but I still had underlying chronic D.

My last cycle at the end of March was severe; and I have been unable to process most foods since. I am losing weight and the fatigue has been overwhelming. To make a very long story short, I was referred to a Rheumatologist six weeks ago and she suspects Celiac. She put me on a gluten free diet; the change has been dramatic. I have had solid stools for the first time in 3 years and the severe bloating and cramping is mostly gone. The celiac tests so far have been inconclusive, but it would explain much of my as well as family medical history.

I meet with my GI next week for the next level of testing which includes scoping and biopsies. Thank you for sharing your story. I still have some D and food intolerance, so I will ask him about colonization.