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

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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.