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


Jherm21

Recommended Posts

Jherm21 Community Regular

Help!! I don't know if anyone else on here head been diagnosed with sibo but I can't get it out of my head. I was told in August I had positive methane breath test normal low numbers for hydrogen. I was prescribed Xfaxin and denied three times through insurance. I'm so confused on my next move. One doctor said if you don't get the medicine just forget about the diagnosis and the other gi I saw said we could use a different antibiotic. Does anyone have any suggestions to beat this beast. I'm so confused. I have all types of horrible symptoms. So much fatigue especially by afternoon. Was told I need to treat my supposedly sibo problem before treating my acid reflux. 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
1 hour ago, Jherm21 said:

Help!! I don't know if anyone else on here head been diagnosed with sibo but I can't get it out of my head. I was told in August I had positive methane breath test normal low numbers for hydrogen. I was prescribed Xfaxin and denied three times through insurance. I'm so confused on my next move. One doctor said if you don't get the medicine just forget about the diagnosis and the other gi I saw said we could use a different antibiotic. Does anyone have any suggestions to beat this beast. I'm so confused. I have all types of horrible symptoms. So much fatigue especially by afternoon. Was told I need to treat my supposedly sibo problem before treating my acid reflux. 

Open Original Shared Link

This is a National Institute of Health article that summarizes many of the studies done on SIBO, including diagnosis and treatment with different medications. Perhaps your insurance would cover a medication mentioned here.  

Also be aware SIBO causes malabsorption, so check into possible vitamin deficiencies.  A deficiency of vitamin B 12 and vitamin D can cause fatigue like you mentioned.  Other B vitamins like niacin help heal the intestines.  

Hope this helps

Feeneyja Collaborator

My daughter was SIBO positive two years ago. Flagyl was first prescribed but she had a bad reaction to it so then the Xfaxin was approved. So you may want to try Flagyl first.  Also, we were not given any dietary advice or what to do to keep the SIBO gone, so she had a recurrence early this year. Insurance wouldn’t approve going back to the same pediatric GI doc, so we switched insurance. It took a couple of months so I used the info here to treat her:

Open Original Shared Link

I can tell you that with a combination of herbal antibiotics, a diet low in fermentable carbs, and a supplement designed specifically with Methane SIBO in mind (Atrantil), plus a supplement to increase gut motility (Iberogast) we took care of it.  We have been increasing the fermentable carbs and adding probiotics with great success.  It’s the best she has looked and felt in years.  

When we finally made it back to the GI doc she commended our work.  She did state that for some folks SIBO is a bit chronic, so be sure to act with additional herbal antibiotics if it looks like it is returning.  To keep my daughter SIBO free, we have basically gone Paleo and made sure she takes a supplement to improve motility.  Grains and lots of processed sugars are clearly bad for her gut.  She also is dairy intolerant.

There are lots of ways to treat SIBO. Standard antibiotics, herbal antibiotics, diet only, elemental diet, probiotics only.  It depends a great deal on how bad it is and what you tolerate.

And yes, SIBO causes intestinal permeability.  So it can cause inflammation, gut damage, vitamin deficiencies, and additional food intolerances.  You don’t want to ignore it as one of your docs suggested.  Celiac researcher Dr. Fasano has suggested that it is a key player in the development of autoimmunity.  

Also know that when you treat it (no matter which treatment), you will experience what is called a die off reaction.  It is the result of the toxins from the dying microorganisms.  Google it...but within the first days you will temporarily feel worse.  But it typically only last a few days.  

Finally, SIBO is more of a symptom than a diagnosis.  There is a reason your body has allowed these microorganisms to overgrow.  Getting to that answer is tricky.  For folks with gluten intolerance, sibo is common.  The thought is that celiac and NCGS can affect the autonomic nervous system  which is what controls the peristaltic waves that push bacteria to the large intestines.   This allows overgrowth.

Check out the above link and talk with your doctor.  You can definitely do this.  Best of luck to you.

 

Jherm21 Community Regular

Thanks for the info! Will try the mentioned reccomindations 

Holycow Rookie

I was prescribed xifaxin for SIBO and it wasn't covered by insurance.  I got it by asking for samples from my MD.  Call your MD and explain you cannot afford it and ask for samples.  Normally, they have enough to give you the required course of antibiotics.

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,020
    • Most Online (within 30 mins)
      7,748

    Ericaa
    Newest Member
    Ericaa
    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
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • 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!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • 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
×
×
  • 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.