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Author Topic: Just diagnosed with SIBO... anyone else out there with it?  (Read 776 times)

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Offline livelaughlove

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Just diagnosed with SIBO... anyone else out there with it?
« on: December 03, 2013, 06:34:54 PM »
Has anyone else out there been diagnosed with SIBO (Small Intestinal Bacterial Overgrowth)? And if so, did you take xifaxin? And how are you now? I had an EGD and biopsy showed duodenal intraepithelial lymphocytosis and crypt hyperplasia, negative H pylori, and I don't use NSAIDS. So the differential is celiac disease (which I am negative for... I do not have DQ2 or DQ8 genes so it is impossible for me to have celiac). So if it's not celiac, then it means autoimmune disorder or SIBO. So I had lactulose breath test recently and it came out positive for SIBO ( I had double peak hydrogen counts on the test). I pretty much eradicated all my gastro issues through diet... i did a strict diet for a long time of high fat, high protein, low starch and that nearly killed the bacterial overgrowth but it's still there as proven on the test (i figured I had this nearly over a year ago and no doctor would listen to me, so i had to take matters in my own hands... so i figured since bacteria ferment upon carbs/sugar then if i cut out grains and synthetic sugars i would be killing them off... and I was right!). I can take xifaxin, but that only temporarily gets rid of it and it will likely keep coming back. But since I can hold it down with diet I am contemplating should i even bother with an antibiotic if it is just going to come back? However, I am thinking of taking the antibiotic to see if it will temporarily boost my energy level and make my muscle twitching stop. I don't know what to do. My doc really knows nothing about SIBO so I am even wondering if I should just switch doctors to one in the city who actually knows about SIBO. Anyone else with SIBO or any knowledge of it?
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Offline livelaughlove

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Re: Just diagnosed with SIBO... anyone else out there with it?
« Reply #1 on: December 04, 2013, 09:17:48 PM »
Anyone??? Hello??? just what i thought... most doctors don't even know of this... so most people that aren't doctors don't even know of this... so there is like no one out there to talk to :( FRUSTRATED!!!!!
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Offline dmarie725

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Re: Just diagnosed with SIBO... anyone else out there with it?
« Reply #2 on: January 12, 2014, 09:12:05 PM »
Hi there...I'm wondering what your symptoms of SIBO were? Did you have the breath test for it?
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Offline dmarie725

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Re: Just diagnosed with SIBO... anyone else out there with it?
« Reply #3 on: January 12, 2014, 09:26:42 PM »
I'm sorry I forgot to mention...I've been curious about sibo lately. I've had weird excessive belching issue the last 4 months and also lots of muscle twitching. Not sure if they are related. I've had a lot of GI tests and all come back normal so I never get any answers as to what's causing the burping. Do you have these symptoms? My dr has never brought up sibo...
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Offline livelaughlove

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Re: Just diagnosed with SIBO... anyone else out there with it?
« Reply #4 on: January 13, 2014, 05:48:36 AM »
Hi! I got the xifaxin but I never started it yet, but I will. I have to take one pill a day three times a day for 10 days. I have to get a probiotic to take at the same time and i have to continue to take the probiotic for at least a month afterwords, and the probiotic should have 20-50 billion microbes... that is because xifaxin will kill off all the bacteria so the probiotics will give me good bacteria so I don't get C diff. My only symptom was chronic chest discomfort and that was it, like a lot of times, it feels like an elefant is sitting on my chest... but I do think it's musculoskelatal in nature, like I am always pulling the muscles in my chest or getting costochondroitis, cause sometimes it hurts to push on my sternum and my lower ribs... i think it's just harmless inflammation. Anyway, i got the upper endoscopy to see if i had GERD and comes back no, I don't have GERD, my esophagus is fine, I don't have H pylori, My stomach had some inflammation but everyon'es stomach does so that's normal, but my entire duodenum had a granular appearance (that means endoscopically, it looks different, something caused the entire surface to change in appearance). So biopsy taken, and comes back duodenal intraepithelial lymphocytosis, which is a rare finding. That can be indicative of celiac disease, so I had genetic testing and I do not carry the genes so I don't have celiac disease. I don't use NSAIDS and i don't have H pylori... so I never got an answer, and others like me with that finding don't get an answer either. So i did research and learned that bacterial stasis can cause SIBO and you would get a lactulose breath test to diagnose it, that would cause the lymphocytosis. So i took the breath test and it was positive because i had double peak hydrogen counts. I can tell you after the upper endoscopy, i was just told to take nexium indefinitely, which i did, and that resulted in making me have severe liquid water diarrhea, i would get flares of it, going around 10 times a day and it was like pee, no lie. I read nexium and PPIs cause diarrhea in people with SIBO cause they further cut down gastric acid which is needed for digestion, so someone with SIBO taking nexium or another PPI, will have horrible increased symtoms. So, that;s basically it. I dont really get burping. I think i do pass a lot of gas depending on what i eat. I stay away from garlic, onions, artichokes, anything ending with an -ose or -ol and no HFCS. I try to eat all fresh whole foods, and lactose i am fine with (as in dairy products). So i think by eating clean that;s why i feel really good, but the SIBO is still there. The fasciculations, ive had them for 9 months or so, cant figure that out, other than i think i have overactive nerve responses constantly firing off making me twitch. I do have to say i have majorly increased my sodium intake and that seems to help. The major symptoms of SIBO would be excessive gas and major liquid diarrhea. Some people just have bad constipation with it.
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Offline notsocalm

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Re: Just diagnosed with SIBO... anyone else out there with it?
« Reply #5 on: January 30, 2014, 05:24:06 PM »
Hey livelaughlove, I am not currently diagnosed with SIBO although I have suspected I had it in the past. I do have gastroparesis though which can lead to sibo. When I was considering SIBO as a possibility I read a ton about it. Xifaxan really is the best option and is regarded as very safe. Absorption into the bloodstream is almost zero so the effects are contained within the intestine. Sibo is often a result of poor motility. Have you had a gastric emptying study done, if not it might be worth looking into. I would also read up on the Pimentel protocol developed by a doctor on the west coast. Some people have had permanent remission from xifaxan and even if that is not the case for you, a jumpstart might be what you need. Hope you feel better.
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