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SIBO Season?

April 23, 2009

I think it must be. New comments on the old abandoned blog, new members in the yahoo group. I am organizing my thoughts in the hopes of updating the blog. I live with SIBO, it lives with me. These things need to be documented so that others may also live so harmoniously with their bacterial imbalances.

If anyone who reads has any thoughts on what they’d like to see (besides a more thorough description of what happened to me after the first course of Xifaxan) I’d love the input. Until then, best of health to us all!

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9 comments

  1. Hi,

    I have been dealing with stomach issues for the past four months and it has been particularly frustrating because I am getting married in July. When my symptoms first started back in January, I naively thought that they would be resolved with a visit to the gastro and possibly a prescription of some sort. Since then I’ve had a number of tests, but no clear answers.

    My endoscopy showed a mildly increased number of lymphocytes in the small bowel, but not much else. Based on this my gastro suspected celiac. After going on a gluten free diet for about 1.5 months, I didn’t notice much of a difference. Then my gastro suggested doing the hydrogen breath test – it came back positive for hydrogen gas. My doctor put me on xifaxan 600 mgs for 2 wks. At first, it didn’t seem to be working, but around day 10, I noticed a significant improvement.

    My main symptom is feeling uncomfortably full quickly. I guess that is called distension? My lower belly does seem to stick out by the end of the day, but then i’ve always had a small pot belly. Other than that I have some mild gastritis causing me to have feelings of “hunger pangs” that generally go away with food.

    So the xifaxan did away with the feelings of fullness, to where I felt i could eat a normal sized meal. Anyhow, I just finished with the course yesterday, and am scared that the infection will return. Based on what I’ve read on-line, it seems that it always does… So I have also been wondering about a low carb diet.

    I guess my question to you is, are you now feeling somewhat back to normal? And if so, how did you discover the diet that works for you. If it was through an elimination diet, what food groups did you eliminate?


  2. Hi Adrienne. It sounds as if Xifaxan helped you? What you describe sounds eerily familiar. Before I took Xifaxan, my worst symptom was distention. As I noted in this blog, I took measurements twice daily, upon waking and at night and my belly would expand throughout the day to the tune of two or three inches around my waist and my hips. After the Xifaxan, I would often still feel bloated after meals, but to my surprise, my clothes did not fit any tighter, and a glance in the mirror would confirm that my belly did not actually get any bigger. Is this how you are feeling now?

    Unfortunately, I think the SIBO returns in a lot of us. There’s a brand new study showing that Lialda, a medicine typically given for Crohn’s I believe, when taken after Xifaxan, can possibly reduce recurrence. The study is small but promising, but only broke in April. I am about to take my third course of Xifaxan. I feel lucky to have a doctor that prescribes it, and lucky to be able to afford it, but of course I wish I never had to take it again. However, I do feel almost completely back to normal, most of the time, after being afraid for years that I might never feel normal again, and that is worth a course of Xifaxan two or three times a year. I have to be aware of my body and how food makes me feel; I have to go back to a strict diet of low carbs on occasion, but all in all, I feel that I have my life back.

    If you’re open to a low carb diet, I urge you to give it a try. It has really helped me. As far as the elimination, I actually began this blog with a series of entries about my elimination diet; I think I ate nothing but green veggies and fish, slowly expanding to include goat dairy, greek yogurt, etc. The results were confusing at the time, but the diet allowed me to see that I was having trouble with an entire macronutrient – carbohydrates – and since one doesn’t just have a macro intolerance, I knew I did not just have a food intolerance; something else was going on.

    Feel free to keep in touch via this blog or my yahoo group.

    -Girrlock Holmes


    • Girrlock Holmes,

      Thanks for your reply! My doc has put me on a low carb diet for 2 wks following my rifaximin treatment, and the bloating/fullness is definitely under control. When I avoid carbs, I almost feel normal after eating a meal. I guess the question now is – how long do I have to be on low carbs for?!

      A few other questions for you – first, did you experience stomach pain with the SIBO? Like I said, I was also diagnosed with mild inflammation of the stomach lining. The rifaximin treatment seemed to cause a flare up of my gastritis and all the protein I am eating these days don’t seem to help. I am wondering if you had any similar symptom/experiences.

      Finally, I noticed you have candida as one of your blog categories. Did you also suspect yeast overgrowth? And if so, how were you able to diagnose it?

      You mentioned that you have a yahoo group – how do I join?

      Thanks and so glad to hear that you are feeling somewhat back to normal! That’s awesome!


  3. I just found this blog, after searching endlessly to see what my bloating problem was all about. Two gastros have blown me off – one with a quick IBS diagnosis with no testing whatsoever, the other with a stomach emptying test that said he would only be able to help with an endoscopy, but I want a hydrogen test. Shall I do the endoscopy? After noticing a pattern, I put myself on a low carb diet (induction phase of Atkins) and it has helped TREMENDOUSLY. However, for the first time in a week, I bloated and as I type this, I sit here uncomfortable and unhappy. I need to know what the exact problem is so I can work on it! How do I find a doctor that supports a SIBO diagnosis? Did you get lucky with yours or did you seek them out? I’m so frustrated, unhappy, and I too am getting married this year. I hate this. 😦


    • Layla,

      Congrats on getting married and sorry to hear that your stomach is not feeling well! I totally know how you feel – this has been the most frustrating/hellish problem I’ve ever had to deal with in my life. I guess my advice to you is to keep looking until you find a gastro that you like. Perhaps ask around for referrals? Finding a good doctor is key to avoid wasting your time and suffering longer than you need to.


    • Hi Layla. Sorry to take so long to get back to you. Again I’ve neglected the blog…I did have to do my research to find a doc who would test for SIBO; it wasn’t incredibly hard but I had to look around. Perhpas you can get a referral from a current doc who doesn’t do the test? It was especially helpful to me to get a nutritionist to back me up and say that I needed the test. That way, even when my doc acknowledged that he didn’t do the test, he supported my search for someone who did and ended up working very well with that doctor to administer the treatment that I needed.

      Always scope at least once if your doctor suggests it; no harm no foul in finding out what isn’t wrong with you (that’s what scopes are for – to make sure there isn’t something more serious and more painfully obvious going on.) Gastros will continue to try to blow you off with the IBS diagnosis because its easy and conventional and takes the responsibility off their hands and places it squarely on you to “relax” or “calm down” or whatever. The responsibility is on you – but not to be a better mental health case; don’t let them make you think that any of this is in your head. Just keep working with your diet and do your research.


  4. I have been on the xifaxin neomy treatment for 6 days, and I have seen no improvement in my symptoms. How long does it take to start working?

    Thanks.


    • I never took the Xifaxan/Neo combo; I have only taken them one at a time. On the IBS boards (www.ibsgroup.org) a lot of folks seem to see improvment right away but that has almost never been the case for me. Only once did I feel better during the antibiotic course. The other times (I’ve taken 5 courses now 😦 ) it was much more gradual. I know for me keeping a strict low carb diet is really key to making sure the antibiotics can do their job…and the positive change always comes slowly a few days/weeks after the meds. Good luck.


  5. Once you complete a 10 day course of xifaxan/neomycin should you have another hydrogen breath test? How does one know if the antibiotics work?



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