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

Recommended Posts

peeptoad Apprentice

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

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

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

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

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

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.

  • 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. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    2. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Positive biopsy

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Positive biopsy

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

    • Total Members
      133,013
    • Most Online (within 30 mins)
      7,748

    jsslynjnes25
    Newest Member
    jsslynjnes25
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
    • pothosqueen
      I was just diagnosed at 26 after accidental finding. Any simple tips for newbies? Things a non celiac would never think of? I already went through my prescriptions and identified some medications that have gluten. Is there a beginners guide? Celiac for dummies?
×
×
  • 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.