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

AnnaChristine18

Recommended Posts

AnnaChristine18 Newbie

So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer :D I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: 

 

Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit?

My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? 

WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? 

 

And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end?

Support is desperately needed here. Thanks everyone!


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

So after being strict paleo for almost 6 months after my celiac diagnosis with no relief, I finally found my answer :D I took a breath test for small intestinal bacterial overgrowth today and it cmd out very, very positive. The doctor was able to tell me it was positive not even half way through the test! There's a very large amount of methane, which explains my severe bloating, gas, and constipation that's been worsening every day since going gluten free. I was so happy to have an answer I burst into tears, while simultaneously cracking up and hugging the nurse who told me it was positive (whom I'd just met that hour…) Needless to say, this was the best news I've ever heard. I finally get to have a life again! I'll get to go out, eat normal amounts of food, wear tighter clothes again without having to worry about my swollen gut showing lol. I'm pretty much ecstatic!!!(: 

 

Now my questions are….well, what do I do now? Is there anyone else who experienced this? Not getting better after going gluten free then finding out SIBO's the culprit?

My doctor prescribed me Rifaximin twice a day for 10 days and then Neomycin twice a day for another 10 days afterwards. But she also mentioned that a large amount of methane as opposed to hydrogen in the intestine is harder to treat and less common /: (with my luck) This scares me and makes me feel like I should be extra careful. Is there anything else to do to kill off the bacteria? What probiotics would be good for helping to treat sibo? I already take Acidophilus but is there one that would work better? 

WHat about diet? I know the bacteria feeds of sugar and carbs? What sort of diet it recommended when treating SIBO, if there is any? 

 

And most importantly.. did this simple fix, the antibiotic, cure your ongoing symptoms? I feel like in a way it's too good to be true. I've been living in unbearable constant pain from the time I wake up till I go to bed for so long I feel like I've grown accustomed to it! Could this really be the end?

Support is desperately needed here. Thanks everyone!

 

Hi Anna.

 

I don't know about additional measure you can take, however, this issue has been discussed and you should be able to search the site for the discussions. 

 

Good Luck

 

Colleen

cyclinglady Grand Master

A probiotic called Bio-K is what my doctor ordered after big events like surgery, etc. It has to be refrigerated, is gluten-free, and there are soy, and rice-based versions. Then follow up with standard probiotics in a capsule.

I would recommend (and I am not a doctor) just eating protein, veggies (avoiding those grown underground like carrots, potatoes) no grains or fruit for a week or so and then slowly start adding foods back into your diet. Avoid those that naturally produce gas like legumes for a while.

I wish you well.

FruitEnthusiast Enthusiast

It sounds like your Doc gave you the right combo of meds for it. It's good that you want to make the most of them by eating the right foods too. The Specific Carbohydrate Diet (SCD) is designed to limit sugars and carbs so the bacteria have less to feed on, and also to reduce inflammation. Here are a couple links about the diet and the suggested foods list.

 

Open Original Shared Link

Open Original Shared Link
 

AnnaChristine18 Newbie

I've read into both SCD and FODMAPs and then found a list of foods legal and illegal on BOTH diets combined to fight sibo. And it's printed out on 10 pages in such a neat order!

I'm about to follow that s$#& like a bible.

I am so ready for this to be over with so I finally feel myself again!!!

 

Cylinglady, did you or do you now have SIBO? I've been reading so much contradictory information about probiotcs :/ Whether I should take them while on the antibiotic, or once I get off the antibiotic, or not at all? So confusing. Do you have any input on this?

cyclinglady Grand Master

In the old days (20 years ago) my doctor pushed probiotics long before they became popular and had a lot of studies done. I would have waited until my course of antibiotics was done or nearly done, but now, if I had a really big issue, like you, I would start them concurrently with the antibiotic. Use different strains and eat foods, if possible, that are fermented, etc. Prebiotics are important too.

I do not know if I was diagnosed with SIBO. At one time, over 20 years ago, I got intestinal issues traveling and was prescribed antibiotics. If I recall, stool samples showed a lot of bad bacteria and some parasites. I used probiotics back then and after every surgery.

  • 2 months later...
dania Explorer

AnnaChristine18 - how is treating your SIBO going? There are a few things I've come across that are supposed to be beneficial for SIBO, beyond diet modifications. One is making sure you have adequate stomach acid levels, which ensures that food is properly broken down rather than fermenting and feeding bad bacteria. Stomach acid also helps kill bad bacteria and parasites, apparently.

The other is, have you ever had your thyroid tested? Thyroid issues are apparently common with celiac, and they're also associated with SIBO. If things are moving through your system slowly due to hypothyroidism, it is more likely they will ferment and provide food for bad bacteria. Having proper thyroid levels could help prevent SIBO from returning.


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



Celiac.com Sponsor (A8-M):



gilligan Enthusiast

I have SIBO, also.  I've been on two rounds of rifamaxin, and I'm sure I'm about to go on a third round.  The g.i. that I see told me not to take probiotics while on the rifamaxin.  He also prescribed the FodMap diet.  He gave me book called The Fodmap Diet by Dr. Chey, and sent me to a dietician to get started on the diet.  It's important to follow the diet carefully.  The bummer about SIBO is that once you have it, you are prone to get it over and over.  Several sources on the internet reported that it never truly goes away.  I haven't personally been told that.  I can tell you that I felt great immediately after starting the drug regimen.  I continued to feel great for a few weeks, and then I slowly started returning to the typical problems.  That's when I started taking the second round of meds.  Again, I was feeling great for about five weeks.  At the follow up with the dietician, we started planning the challenge phase of slowly trying out higher fodmap foods.  This week has been awful!  All the symptoms are back.  I called the dr. today, and he ordered another hydrogen breath test to be administered before he orders a third round of meds.  It's not a fun thing to have!  I hope it turns around for you soon.

gilligan Enthusiast

In the old days (20 years ago) my doctor pushed probiotics long before they became popular and had a lot of studies done. I would have waited until my course of antibiotics was done or nearly done, but now, if I had a really big issue, like you, I would start them concurrently with the antibiotic. Use different strains and eat foods, if possible, that are fermented, etc. Prebiotics are important too.

I do not know if I was diagnosed with SIBO. At one time, over 20 years ago, I got intestinal issues traveling and was prescribed antibiotics. If I recall, stool samples showed a lot of bad bacteria and some parasites. I used probiotics back then and after every surgery.

Antibiotics for SIBO are not to be taken at the same time as probiotics.  In fact, before I finished the meds the nurse called to remind me not to take them until I finished the last dosage.

  • 3 weeks later...
AaronM761138 Newbie

  I had SIBO off an on for over a year.  I've also taken antibiotics.  The evidence is that antibiotics are not as effective, long-term, as changes in diet.    Flagyl even made things worse.  What happens with SIBO is there's an imbalance of bacteria, but antibiotics basically indiscriminately eliminate all bacteria, even the ones that help, and can lead to complications like C. dificilis, which is potentially very dangerous.

 

  Align is a decent probiotic and its one of the few that really works for me.  If you have methane, that's more likely to be assosciated with constipation.  I also have gotten a lot out of eating real sauerkraut, kimchi, and kefir (it's a milk culture).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    2. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    3. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    4. - pdm1981 replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,850
    • Most Online (within 30 mins)
      7,748

    Roselle
    Newest Member
    Roselle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
    • pdm1981
      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5 days. It was unbelievable. I had what would've been 4 years of testing back home done in 5 days. I went home at the end of 5 days and got my results a week later on a zoom call. EPI and rapid gastric emptying syndrome. I do have celiac disease but that wasn't the cause of my continued symptoms. Those people up there are great. Wouldn't that be amazing if all medical care was like that?  That's weird that the antibodies are that high. Hopefully it's not refractory celiac disease. Good luck.
    • Dawn Meyers
      Antibodies my number is in 500's. COVID hit and I was  layed off from my job so no insurance (was in Arizona) so couldn't complete all the other testing they wanted to do. Back home and contacted Minnesota Mayo and they take my new insurance so considering going back in spring. 
×
×
  • Create New...