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

Sibo Recurrence

peeptoad

By peeptoad
in Related Issues & Disorders

Recommended Posts

peeptoad Apprentice
peeptoad
Posted

In addition to presumed non-celiac glucose intolerance I've been battling recurring SIBO for the last 5 or 6 years. Was finally diagnosed in 2009 and I'm now on my 4th course of rifaximin (antibiotic) over the last two years due to relapse/recurrence.

I know there are a number of other people here with current or past) SIBO and I know it's common for it to recur...

Has anyone had any success with stopping SIBO for good?

I'm slowly modifying my diet to try to drastically cut down on sugar/carbs (I fear I'll never be able to elminate it completely though)and going gluten-free definitely helped, but I'm back on antibiotics right now, so I know that's not enough by itself.

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

Yes, I had 8 bacterial, parasitic and yeast overgrowth 'infections' over a 4 year period. However, I was diagnosed with each of those by stool tests which identified the exact 'bug' and tested which drugs and/or botanicals could kill my specific bug. Then I was given a treatment which was specific (according to lab tests) to that gut bug. I eliminated every gut bug and then found a doctor who discovered the source of my low immunity: (1) low stomach acid (dx'd by Heidelberg capsule test), (2) low thyroid function (blood tests for TSH, free t3, free t4, TPOab), (3) low vitamin D3 levels (blood test) and (4) low good bacteria (stool test). After treating all those 'causes' (and killing the last overgrowth parasite), I haven't had another gut bug 'overgrowth' for almost 2 years after that 4 year period of infections. (Subsequent stool tests were clear of 'bad' levels of gut bugs.) So I want to ask you:

How were you diagnosed with 'SIBO'?

Did your diagnostic test identify the exact gut bug (bacteria, parasite or yeast)?

Did your doc prescribe rifaxim because tests showed it would kill your specific gut bug? Or did your doc prescribe rifaxim, becuase he considers it an all purpose antibiotic (none exists)???

Have you had a stool test(s) which identifies your good and bad gut bacteria?

Are you taking probiotics after each treatment with rifaxim? How potent (number of live cells per capsule) are your probiotics?

peeptoad Apprentice
peeptoad
Posted
  • Author

Yes, I had 8 bacterial, parasitic and yeast overgrowth 'infections' over a 4 year period. However, I was diagnosed with each of those by stool tests which identified the exact 'bug' and tested which drugs and/or botanicals could kill my specific bug. Then I was given a treatment which was specific (according to lab tests) to that gut bug. I eliminated every gut bug and then found a doctor who discovered the source of my low immunity: (1) low stomach acid (dx'd by Heidelberg capsule test), (2) low thyroid function (blood tests for TSH, free t3, free t4, TPOab), (3) low vitamin D3 levels (blood test) and (4) low good bacteria (stool test). After treating all those 'causes' (and killing the last overgrowth parasite), I haven't had another gut bug 'overgrowth' for almost 2 years after that 4 year period of infections. (Subsequent stool tests were clear of 'bad' levels of gut bugs.) So I want to ask you:

How were you diagnosed with 'SIBO'?

hydrogen breath test

Did your diagnostic test identify the exact gut bug (bacteria, parasite or yeast)?

No. The HBT doesn't do this...unfortunately.

Did your doc prescribe rifaxim because tests showed it would kill your specific gut bug? Or did your doc prescribe rifaxim, becuase he considers it an all purpose antibiotic (none exists)???

I presume the latter, however rifaximin has worked for me 3 out of the 4 times I've taken it (at least in terms of symptom-improvement).

Have you had a stool test(s) which identifies your good and bad gut bacteria?

no

Are you taking probiotics after each treatment with rifaxim? How potent (number of live cells per capsule) are your probiotics?

I have been, yes. I took Align twice and another rband I got at the health food store once. None of them seemed to make a bit of difference, although I assume they helped somewhat with good flora? I'm trying a different brand this time (after the abs are done): Custom Probiotics. I think I actually saw a post of yours somewhere saying you took these and they helped. Not other pro-Bs I've taken have helped; I may as well be taking a sugar pill.

Responses in bold. Do you think I should pester my GI doc about the stool test for specificity (even with symptom-improvement on the rifaximin)?

I also mentioned hypochloridia to my doctor well over a year ago and he didn't seem to think that was an issue due to my age... ??

  • 2 weeks later...
peeptoad Apprentice
peeptoad
Posted
  • Author

Well, as a quick follow up (if anyone cares) the rifaximin did the trick... but my doctor thinks I have small bowel dysmotility (not his words, but I'm putting two and two together). Seems he's right since I've had SIBO recur 4 times over the last 3 years.

Now on Reglan which I'm not happy about at all... it's already starting to make my insomnia slightly worse, although that could be attributed to other things.

Has anyone here used Iberogast before??

It's an herbal prokinetic and it's (according to 3 research articles I've read so far) supposed to be comparable to prokinetic drugs like Reglan, but without the horrific side effects.

burdee Enthusiast
burdee
Posted

Well, as a quick follow up (if anyone cares) the rifaximin did the trick... but my doctor thinks I have small bowel dysmotility (not his words, but I'm putting two and two together). Seems he's right since I've had SIBO recur 4 times over the last 3 years.

Now on Reglan which I'm not happy about at all... it's already starting to make my insomnia slightly worse, although that could be attributed to other things.

Has anyone here used Iberogast before??

It's an herbal prokinetic and it's (according to 3 research articles I've read so far) supposed to be comparable to prokinetic drugs like Reglan, but without the horrific side effects.

I never used Iberogast. However, you need a probiotic with at least 12-50 billion live cells per capsule. I don't think Align has that much. Custom Probiotics would supply a more potent probiotic.

I don't think your doc said 'motility' unless he suspected you're hypothyroid, which causes metabolic motility issues and constipation. However he could have suggested you don't have enough good bacteria, which would allow those overgrowth bacteria to flourish. So taking high dose probiotics now (after killing the last one with Rifaxim, if you know for sure) would be a good idea.

How do you know for sure that Rifaxim 'did the trick'? Did you retest for SIBO? I don't understand how hydrogen breath tests work. Can you explain? Also I think Rifaxim is a gamble, because there are no all-purpose antibiotic drugs. Each kills specific bugs. Maybe you were lucky.

I hope you don't have more recurrences of SIBO. Like I said, I had 8 different gut bugs over a 4 year period, until I was diagnosed with low stomach acid production and resolved that along with taking really high dose probiotics. I also had to address several other issues which challenged my immmunity like low vitamin D3 levels, low thyroid, low White blood cells and low DHEA.

peeptoad Apprentice
peeptoad
Posted
  • Author

I don't know for sure that the rifaximin worked because I did not have a follow-up breath test, but the four times I've taken it my symptoms (abdominal distention and incomplete evacuation/poor stool quality) have all disappeared by the end of the course. So I think I can reasonably assume that it worked?

On your recommendation and another I got from a different site I am using the Custom Probiotics along with the Reglan (my doctor did recommend that I use pro-bs).

Reglan is used for motility issues is it not? (it's a prokinetic) I guess that's why I assumed that I had a motility issue... well, that and I mentioned it in an email to my doctor and he didn't dispute the point and went on to prescribe the Reglan.

Are thyroid issues the only thing that can cause intestinal motility problems? (My thyroid checked out normal on blood test last time it was tested).

For the breath test see below (I've had the one with the lactulose performed 3-4 times now, before antibiotics, and it's been positive every time):

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,020
    • Most Online (within 30 mins)
      7,748
    Gigi42848
    Newest Member
    Gigi42848
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      My son newly diagnosed

      By Nicola McGuire · Posted

      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Celiac pain relief

      By Scott Adams · Posted

      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...