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Can you be "cured" of SIBO?

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Irritable Bowel Syndrome
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Posted 7/1/2011 2:39 PM (GMT 0)
Hi, Everyone,

Last year, after years of self-dxing myself with IBS-D I went to the doctor after one of my episodes caused me to faint. Anyhow, after several tests, and mostly ruling out any sort of IBD, he said we'd proceed as if my symptoms were due to IBS. Sooooo...in August he rxed me a round of Xifaxan b/c he said sometimes IBS symptoms are caused by SIBO and this med can take care of that. No hydrogen breath test or anything, just did the meds. I saw improvement within a week, and it lasted to the end of the year roughly, with problems returning in December. I then saw him in January, and he said, okay since that worked, let's try it again. So I did another round, and have been pretty much symptom-free since, with one mild episode in May, which is the only one I can think of.

Has anyone had such success with Xifaxan? I think 7 months is longer than Xifaxan usually works. Seems like he told me 3 months is usual. Maybe he is wrong.

Okay, thanks!

May
Posted 8/20/2011 4:54 PM (GMT 0)
Hi MayOK,

I have read some of your previous posts and noticed you tested positive for the IBD serology panel but were not definitively dx with IBD. What were your results out of curiosity? I also tested positive for both ASCA and atypical ANCA and have some concerns but my symptoms don't exactly fit with crohn's or UC as the doctor says. They don't even want to do a full workup yet. My question is, how did they rule out the IBD? What did they say about the positive tests?

I was prescribed Xifaxan for only 2 days! DIdn't notice a difference...Sorry I can't help more there.
Posted 8/20/2011 10:40 PM (GMT 0)
I only tested out of range for one antibody, anti-cbir1. And even that was not grossly out of range at 28.3 where reference was less than 21 EU/mL. My other values even if detected were all in range. With the serology, I understand it is the overall pattern of results compared to positively diagnosed Crohnies and UCers that results in a result of "Pattern Consistent with IBD: Crohn's Disease/UC/Indeterminate IBD."

I had c-scope, upper endoscopy and pill cam. Although the upper endo showed mild chronic inflammation in both esophagus and stomach, no pathology came back indicative of Crohn's. I had "multiple lymphoid nodules" noted on my colonoscopy pathology report, but my GI said that was typical for that area of the body. I had an abdominal CT scan to check out something that was incidentally found on my liver, and none of my intestinal loops that it saw were abnormal, but I don't know how low down it could see. There are several tests I didn't have - no Small Bowel Follow Thru, no CT Enterography, no MRI Enterography or any of that. I kind of stressed about it for awhile, but with IBD the sad fact is that it is mostly a pathological diagnosis - and so if there is not any real evidence of disease then you're not going to get a diagnosis. My doc even said he would want to be sure before he threw any of those god-awful meds at me. Basically, the IBD serology test is considered spurious by many docs, and so with that being the case, he said that if I had Crohn's he couldn't find it and it's also possible I could develop it down the road.

I don't think a 2 day round of Xifaxan would do anything! I was on it for two weeks both times. Xifaxan is also used sometimes in IBD treatment, and I wonder if it's more likely I had mild Crohn's and it put me in remission. This has been great! And he made it sound like if I had SIBO it would just keep coming back and coming back.

Also, I don't know much about UC, but I do know that Crohn's is a disease that presents very differently in each person - it doesn't tick the boxes, so to speak. What are your symptoms, if you don't mind my asking? If you are worried about it, then ask for more tests.
Posted 9/18/2011 4:46 PM (GMT 0)
Hello again,

Sorry for not responding to this sooner. I forgot I had posted earlier! I have been seeing my GP, rheumatologist, and gastroenterologist. The ANCA showed an atypical pattern of (very) high titer (1:320) (specific to ulcerative colitis or a few other autoimmune conditions) so it is increasing and that is a concern. I haven't had the ASCA (baker's yeast - specific to crohn's) values checked for a while but they were also high in July. My other blood tests were in the normal range (including sed rate and CRP which are inflammatory markers). The rheumatologist insists I have IBD, but the gastroenterologist believes it is functional (IBS) (the small bowel capsule endoscopy showed no evidence of crohn's in August). I am going to ask for a colonoscopy as soon as I see my gastroenterologist again in 2 weeks as it is strongly recommended by my rheumatologist that I have it.

FYI...

I ordered a home-test for SIBO a few months ago because I thought SIBO might possibly explain my abdominal cramping. I tested negative for SIBO (but since I ordered the glucose test, not the lactulose test I can't rule out SIBO in the lower small intestine region - I didn't have a prescription for the test) 

My main symptoms are fairly nonspecific:

1) Cramping a few hours after meals, sometimes extreme knife-like gas pains around my bellybutton that seem to last several hours and even into the next day. Fortunately this happens only once or twice every couple of weeks.

2) Chills without fever, cold hands and feet

3) Fatigue

4) Stress and anxiety (probably because I am constantly monitoring my symptoms)

At this point, I am wondering if I might have another autoimmune condition (and the IBS is leading us into the wrong direction) since I have had chronic allergy/sinus issues. They have largely improved since my last sinus surgery (in 2010) but it would explain my hypersensitive reaction to chemicals/environmental allergens. Otherwise, i might be developing IBD as these tests can be precursors to actual illness. I have started to see a nutritionist to see if I can start an autoimmune diet just in case (like the specific carbohydrate diet which I am trying to incorporate into my diet). The nutritionist suggested I get a LEAP blood test done which measures sensitivities to 150+ common foods. It is supposedly highly accurate so I will know within a couple of weeks if there is a particular food I am reactive too. Sorry that this is so lengthy of a response. I do appreciate your input as I am having trouble finding out what these IBD blood tests indicate and if there is a potential for false positive results.

Posted 10/14/2011 7:28 PM (GMT 0)
Hi,
Sorry it took me so long to respond. How are things? Have you had any further testing done? I have not been to a rheumatologist but I know they do a lot of testing and good ones are very thorough. Apparently IBD is very hard to diagnose. GIs want hard core disease evidence (understandably - as the drugs are themselves hard core in many instances) and so sometimes time is required for this to show up. It would be good to have the colonoscopy, as the capsule may not have gotten all the way to your large intestine. Plus a colonoscopy allows the doctor to obtain biopsies. On a side note, have you read about this?

http://www.msgastrodocs.com/mastocytic-enterocolitis

If you are getting a colonoscopy anyway, you may want to ask if they can obtain samples that can be stained for mast cells. This is another IBD that is difficult to see except on the microscopic level.

I frequent another IBD forum and there are many of us "undiagnosed" people. And yes, I think sometimes we get so hung up on, "I must have this" that you can paint yourself into a diagnostic corner, when really something else may be going on and the intestinal manifestations are just a small part of the story. Some of the members I refer to are getting tested for Lupus among other things. A GI will most likely NOT dx IBD off of one blood test.
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