Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,878
    • Most Online (within 30 mins)
      7,748

    DJWI
    Newest Member
    DJWI
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • gregoryC
      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
×
×
  • Create New...