Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone Have C-diff?


burdee

Recommended Posts

burdee Enthusiast

Almost 3 months ago, I was diagnosed by DNA Microbial stool test with clostridium difficile or c-diff. My NP first prescribed flagyl (with horrid side effects like nausea, stabbing stomach pain and strong metallic taste) for 10 days. My C-diff symptoms seem to decrease and I felt much better after the 10 day treatment. I followed that treatment with high dose (127 billion per dose) probiotics to replace the 'good bacteria' flagyl killed, although I took a lower dose probiotic while taking flagyl. However within a few weeks, my c-diff symptoms returned. After I told my doc and before I could consider a different drug, my NP phoned another prescription for flagyl (UUUGGHH!) into my HMO pharmacy. So I started another 10 day flagyl treatment. However, the c-diff symptoms increased while on that treatment. Then I developed both flagyl and c-diff induced nausea to the point I couldn't eat. When I told my doc, he told me to take a 2 day treatment break and then start vancomycin (a stronger drug for c-diff).

After 3 days of vanco, with relatively few symptoms, I got severe gut pain last night, followed by very soft stools (not quite diarrhea) this morning. Fortunately peppermint tea decreases the gut pain and I didn't have any diarrhea today. So I'm committed to endure whatever I must to finish this vanco treatment. (I read stomach pain is common with vanco, but I should contact my doc if the pain is severe. I've had soooo much excruciating gut pain over the past 10 years with first undiagnosed celiac disease, then food allergies, then klebsiella, enterobacter cloaecae and cryptosporidium infections, that my current pain seems tolerable.

So I want to know: Has anyone else had c-diff? How was it treated? Did you have any recurrence? Have you used vancomycin? What was your experience with vanco? Did you finally eliminate c-diff?

SUE


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

As I mentioned in another post, my lab report recommended two different treatments, one an antibiotic I can't remember, and the other a gentian formula which my c.diff was susceptible to. I chose the gentian formula :D and it worked very well. Vancomycin is pretty heavy duty stuff!!!

trents Grand Master

Sue,

I am staff chaplain in a hospital setting and have encountered many patients with C-diff. It's nasty stuff and my heart goes out to you. Take heart, though, you will eventually conquer it. It is contracted most often by those who have suffered an imbalance in their gut microbial mix such as those who have been on prolonged antibiotic therapy for other infections. Keep up the probiotic regimine and remembr that not all probiotics are really effective. A lot of money is wasted on ineffective probiotics. Do some research. Check out a brand called "Align".

And remember to practice good hand hygene with soap and water to protect your family and friends. Alcohol-based hand sanitizers which we normally usen in the hospital setting are not effective with this bug and we are required to wash with soap and water when leaving a C-diff patient's room.

mamaw Community Regular

C-dif is so hard to get rid of! I'm sorry you are going through this....Ecology health , you can google has probiotic listed Dr O'hirra's professional formula that states it can help rid the body of C-dif.

hth

burdee Enthusiast

Thanks, all who replied with suggestions about c-diff treatment.

Trents and Mamaw, I'm taking a freeze dried live cultured probiotic with 8 billion active bacteria per capsule. I've had good luck with that in the past to raise my good bacteria (as evidenced by stool test results). When I finish the vanco, I will take a 7 day higher dose (127 billion live bacteria per dose) probiotic treatment, to restore what antibacterials killed. I know what you mean about worthless probiotics and probiotic products. I've seen lots. My naturopath recommends the probiotics I use.

Mushroom, I hadn't read about the gentian product in all the info about c-diff. I'm glad you had success with that product. My naturopath only recommends flagyl and vanco, especially for well-established c-diff. I may have contracted c-diff after treating for candida with nystatin for 5 months last year. We really don't know how long I had c-diff, because the symptoms increased rather slowly. I at least had it 2-3 months before starting flagyl treatment.

SUE

ann72601 Apprentice
Almost 3 months ago, I was diagnosed by DNA Microbial stool test with clostridium difficile or c-diff. My NP first prescribed flagyl (with horrid side effects like nausea, stabbing stomach pain and strong metallic taste) for 10 days. My C-diff symptoms seem to decrease and I felt much better after the 10 day treatment. I followed that treatment with high dose (127 billion per dose) probiotics to replace the 'good bacteria' flagyl killed, although I took a lower dose probiotic while taking flagyl. However within a few weeks, my c-diff symptoms returned. After I told my doc and before I could consider a different drug, my NP phoned another prescription for flagyl (UUUGGHH!) into my HMO pharmacy. So I started another 10 day flagyl treatment. However, the c-diff symptoms increased while on that treatment. Then I developed both flagyl and c-diff induced nausea to the point I couldn't eat. When I told my doc, he told me to take a 2 day treatment break and then start vancomycin (a stronger drug for c-diff).

After 3 days of vanco, with relatively few symptoms, I got severe gut pain last night, followed by very soft stools (not quite diarrhea) this morning. Fortunately peppermint tea decreases the gut pain and I didn't have any diarrhea today. So I'm committed to endure whatever I must to finish this vanco treatment. (I read stomach pain is common with vanco, but I should contact my doc if the pain is severe. I've had soooo much excruciating gut pain over the past 10 years with first undiagnosed celiac disease, then food allergies, then klebsiella, enterobacter cloaecae and cryptosporidium infections, that my current pain seems tolerable.

So I want to know: Has anyone else had c-diff? How was it treated? Did you have any recurrence? Have you used vancomycin? What was your experience with vanco? Did you finally eliminate c-diff?

SUE

ann72601 Apprentice
Almost 3 months ago, I was diagnosed by DNA Microbial stool test with clostridium difficile or c-diff. My NP first prescribed flagyl (with horrid side effects like nausea, stabbing stomach pain and strong metallic taste) for 10 days. My C-diff symptoms seem to decrease and I felt much better after the 10 day treatment. I followed that treatment with high dose (127 billion per dose) probiotics to replace the 'good bacteria' flagyl killed, although I took a lower dose probiotic while taking flagyl. However within a few weeks, my c-diff symptoms returned. After I told my doc and before I could consider a different drug, my NP phoned another prescription for flagyl (UUUGGHH!) into my HMO pharmacy. So I started another 10 day flagyl treatment. However, the c-diff symptoms increased while on that treatment. Then I developed both flagyl and c-diff induced nausea to the point I couldn't eat. When I told my doc, he told me to take a 2 day treatment break and then start vancomycin (a stronger drug for c-diff).

After 3 days of vanco, with relatively few symptoms, I got severe gut pain last night, followed by very soft stools (not quite diarrhea) this morning. Fortunately peppermint tea decreases the gut pain and I didn't have any diarrhea today. So I'm committed to endure whatever I must to finish this vanco treatment. (I read stomach pain is common with vanco, but I should contact my doc if the pain is severe. I've had soooo much excruciating gut pain over the past 10 years with first undiagnosed celiac disease, then food allergies, then klebsiella, enterobacter cloaecae and cryptosporidium infections, that my current pain seems tolerable.

So I want to know: Has anyone else had c-diff? How was it treated? Did you have any recurrence? Have you used vancomycin? What was your experience with vanco? Did you finally eliminate c-diff?

SUE

Hi Sue,

Yes, I have it too. I can't think of anything that hasn't been tried to resolve the issue until recently. My doctor finally ran some food allergy tests on me and found that I had severe allergies to casein, eggs(white and yolk), milk, soy, chicken, and then some moderate to mild reactions to many other common foods. When these were eliminated from the diet I my C-diff improved within 2 days.

I'm not saying that it will be your issue too, but after 10 years of having the same issue and suddenly seeing an improvement so quickly, I think it's probably safe enough to share this with you as a possibly remedy.

I hope you feel better soon.

Ann


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



burdee Enthusiast
Hi Sue,

Yes, I have it too. I can't think of anything that hasn't been tried to resolve the issue until recently. My doctor finally ran some food allergy tests on me and found that I had severe allergies to casein, eggs(white and yolk), milk, soy, chicken, and then some moderate to mild reactions to many other common foods. When these were eliminated from the diet I my C-diff improved within 2 days.

I'm not saying that it will be your issue too, but after 10 years of having the same issue and suddenly seeing an improvement so quickly, I think it's probably safe enough to share this with you as a possibly remedy.

I hope you feel better soon.

Ann

Hi Ann:

How were you tested for c-diff? I was tested for food allergies several years before the DNA Microbial stool test showed I had high amounts of c-diff. So long before I developed c-diff, I had already abstained from gluten, dairy, soy, eggs, cane sugar, vanilla and nutmeg. I have no other food allergies. I took 3 different ELISA blood test for delayed reaction food allergies and one enterolab stool test for food allergies. Those diagnosed all my allergies.

I realized food allergy reactions and c-diff symptoms can feel similar. I get the same kind of cramping intestestinal pain from eating some of my food allergies, as I did from c-diff. However a stool test, not my reported symptoms, confirmed I had c-diff. I'm also adamant about avoiding my allergens. So I recognize my c-diff symptoms.

I'm glad your problem was really food allergies. Those are easier to resolve with dietary change, than a potentially lethal bacterial infection like c-diff.

SUE

Korwyn Explorer
Almost 3 months ago, I was diagnosed by DNA Microbial stool test with clostridium difficile or c-diff. My NP first prescribed flagyl (with horrid side effects like nausea, stabbing stomach pain and strong metallic taste) for 10 days. My C-diff symptoms seem to decrease and I felt much better after the 10 day treatment. I followed that treatment with high dose (127 billion per dose) probiotics to replace the 'good bacteria' flagyl killed, although I took a lower dose probiotic while taking flagyl. However within a few weeks, my c-diff symptoms returned. After I told my doc and before I could consider a different drug, my NP phoned another prescription for flagyl (UUUGGHH!) into my HMO pharmacy. So I started another 10 day flagyl treatment. However, the c-diff symptoms increased while on that treatment. Then I developed both flagyl and c-diff induced nausea to the point I couldn't eat. When I told my doc, he told me to take a 2 day treatment break and then start vancomycin (a stronger drug for c-diff).

After 3 days of vanco, with relatively few symptoms, I got severe gut pain last night, followed by very soft stools (not quite diarrhea) this morning. Fortunately peppermint tea decreases the gut pain and I didn't have any diarrhea today. So I'm committed to endure whatever I must to finish this vanco treatment. (I read stomach pain is common with vanco, but I should contact my doc if the pain is severe. I've had soooo much excruciating gut pain over the past 10 years with first undiagnosed celiac disease, then food allergies, then klebsiella, enterobacter cloaecae and cryptosporidium infections, that my current pain seems tolerable.

So I want to know: Has anyone else had c-diff? How was it treated? Did you have any recurrence? Have you used vancomycin? What was your experience with vanco? Did you finally eliminate c-diff?

SUE

A massive bout of C. Diff is what triggered my celiac disease. I went two full rounds of anti-biotics, the first time was a full IV drip mega dose with a 10-day followup, the second time being a 21 day series of flagyl. You need to get onto VitaminShoppe.com (or someplace local) and get two or three bottles of Sachromyces Boulardi. It needs to be kept refrigerated, so have it shipped overnight if possible or at least 2nd day. This is a non-candida yeast which occupies the same niche in the gut as C. Diff and will help fill in the habitat that C.Diff likes. About 4 days before you finish your flagyl, start on the Boulardi at double or triple the normal dose. Please be aware that you probably will never completely get rid of it so ANY TIME you take another anti-biotic for anything you should run through a bottle of S. Boulardi starting a couple days before you go off the anti-biotic.

chiroptera Apprentice

Yes, I did and almost died from it. I had been taking an antibiotic at the time. I was in our major University hospital for 1 week. I was one step away from having toxic megacolon when your colons bursts and you die. I had numerous IV's and lots of Vanomycin and Flagyl. The Vancomycin saved my life. It developed into pseuomembraneus (sp?) colitis. TMI here but for over 1 year I had yellow "ribbons" in my stool; it was very bad. I had many re-occurances but fortunately was not hospitalized again.

I have since learned that another contributing factor to the toxins A and B overgrowth (c. difficile ) was that I was on prevacid for GERD for over 8 years. My stomach was all messed up.

Going gluten free has eliminated the severe GERD and I take nothing now. However, I did not have any gastro problems at all until the c diff infection; the infection brought on my gluten/dairy intolerance.

Once you have such a severe stomach/colon infection, the doctors said it can mess your digestion up for life; that's what happened to me.

HTH....

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.