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. - trents replied to Rejoicephd's topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    2. - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    4. - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,321
    • Most Online (within 30 mins)
      7,748

    Unitonika
    Newest Member
    Unitonika
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.