[jmc09]

Went to see my GP and asked for a SIBO Hydrogen breath test and was told it's not available on NHS any more and that the only thing available is a stool sample which I've done loads of times before with no positive results.Is this a reliable test for SIBO?He won't prescribe Cipro or Neomycin as per NHS guidelines as they have bad side effects.Any thoughts or advice please?

 

[Kathleen M.]

Stool test will say nothing about WHERE the bacteria are which is what the issue is.The bacteria in the small intestine for SIBO are the same ones you have in the colon. They are not a different species.They can do an endoscopy and take a sample of the fluid and culture it (the gold standard test that the hydrogen breath test is compared to) but I don't know if the NHS will do that, either.http://www.medicinenet.com/small_intestina...rowth/page6.htm lists the antibiotics used, but don't know if they will do any of the other ones, either.

 

[jmc09]

Kathleen,does that mean that the bacteria produced in the Colon should NOT be in the small intestine and this is a major sign of having SIBO?

 

[Kathleen M.]

The definition of SIBO is you have bacteria growing in the small intestine that should not be there.The colon is supposed to be loaded with bacteria.When they do species typing on the bacteria in the small intestine they are always ones that normally live in the colon, or occasionally ones that also live in the mouth.The small intestine should be relatively free of bacteria. It isn't completely sterile but it should have very low numbers.

 

[jmc09]

Do any UK posters know if there are hospitals over here that still do the hydrogen breath test for SIBO?Or even private clinics that I might be able to persuade my NHS specialist to use for me?I'm in North West England.I've been trying to google places that do it but not getting any hits.

 

[Hester]

Keep in mind the Hydrogen Breath Test can be false positive and false negative anywhere from 20 to as high as 40 percent of the time. It is just not that good of a diagnostic tool for SIBO. If antibiotics make you feel somewhat better and you suffer from weight loss with diarrhea specific "IBS", you probably have SIBO. New studies indicate that a very long course of antibiotics might be necessary to get rid of the bugs in the small bowel. My new doctor trained at the Cleveland Clinic and swears by Xifaxan for SIBO but he uses it with Miralax. That's right: A laxative. He believes it takes quite a bit to "flush" out the long small bowel of bacteria. There is also clinical evidence that the use of PPi's such as Zegrid make SIBO worse. It is the acid in the stomach that sweeps the bacteria from the small bowel. Less acid, means more bacteria grows back. The worsening of my condition after 6 months of bliss on Tetracycline was due to taking the acid blocker. I am much better and now taking nothing but my vitamins and an imodium. This new doctor also stressed staying mobile, active, keep to a good diet of complex carbs, eat small meals with lots of organic veges. There is also some speculation that good fats can slow down the gut. I am not a medical professional but have suffered (like many) with severe SIBO or antibiotic responsive diarrhea. Good luck.

 

[jmc09]

Weight loss is difficult for me to explain to doctors as over the past few years I've weighed from 15st down to 13 and a half stone,my current weight.I'm a 5 ft 11 male and I try to exercise regularly too.Because loperamide has prevented me having Diarrhoea I can eat well,but without anti diarrhoea drugs all food would pass through me quickly causing weight loss,although this hasn't happened for years because of loperamide.This is why doctors don't take me seriously enough as I'm not forceful or emotional enough to explain my frustration,this may be the case with a lot of people here too and why we get passed off as being hypochondriacs by a lot of outsiders and medical people too.I have recently started to write things down when visiting my GP and yesterday I took my iPod touch to give him a web article by Dr Pimentel so maybe this is an idea for others as well as me.

 

[Hester]

Profound weight loss according to the Journal of Gastroenterology is when a person UNINTENTIONALLY loses more than 15 percent of their overall body weight. At one point and over a 7 month period I lost 35 percent. You seem to be right at the 15 percent point and should definitely bring in the documentation for your doctor's attention since that is a significant loss. For me, more than the loss was the weakness, fatigue, breathlessness and brain fog along with the gas that went along with it.

 

[Ste h]

Hey man I was in same situation as yourself, the doc referee me to a gastro doc who said it's better to do a biopsy and culture with a colonscopy than a breath test. I should get the results next but I'm also interested in doing a breath test. The hospital for the colonscoy was called Fairfield(it's private clinic tho as I was covered through my works health care) it's in rainhill as I'm from northwest also. Hope this helps.

 

[jmc09]

Thanks for your info Ste I live not too far from that area but can only use NHS facilities due to circumstances.I've had a few colonoscopies done with negative results but based on Kathleen's information it's actually an Endoscopy with biopsies that needs to be done as the problem lies mainly in the Small Bowel,hope I understood that correctly Kathleen,so a colonoscopy isn't going to reveal the problem it appears.There seems a reluctance by gastro docs to do breath tests here in the UK, I wonder if they view Dr Pimentels studies as not valid? If so they are not helping their patients as a good doctor would try to eliminate ALL possible problems before a proper diagnosis.There must be somewhere in the UK that does this breath test!I'd imagine it would be cheaper in the long run than numerous invasive tests and could give lots of patients a much better quality of life.And isn't that the reason most doctors became doctors in the first place?Cheers.

 

[Hester]

Instrumentation can only reach the very first portion of the small bowel and a person can have SIBO anywhere in 20 feet. Although the "sample" during endoscopy might show somthing. You could still have SIBO because of growth in the middle or lower portions which are unreachable. There is a device in study right now that is a pill that can take samples of fluid at various portions of the small bowel. But no one knows when or if it will get approval. Rumor says maybe at the end of this year. The best evidence as to SIBO are your symptoms and how well you respond to antibiotic treatment. The biopsy would be able to show other diseases like sprue or lining abnormalties which might be of value. If you have not had a colonoscopy and endoscopy with biopsies, these should be performed even though they are unlikely to give you a definitive diagnosis of SIBO. They can provide other information which might offer an alternative diagnosis. Two of my GI doctors have never seen SIBO turn up on an upper biopsy. While many people even those without symptoms such as ours will have a positive hydrogen breath test. I am not a doctor but have done a great deal of research over the past year.

 

[jmc09]

Am I correct in thinking though that a breath test would be a bit more reliable than a colonoscopy due to it being mostly a small bowel problem?Colonoscopies give me negative results but I've never had my small intestine investigated at all.I've responded to trimethoprim unintentionally so I'm determined to test for SIBO.After 20 years of suffering I've got nothing much to lose I don't believe.

 

[faze action]

Colonoscopies give me negative results but I've never had my small intestine investigated at all.I've responded to trimethoprim unintentionally so I'm determined to test for SIBO.After 20 years of suffering I've got nothing much to lose I don't believe.

My colonoscopy was negative also... in fact every single diagnostic I've had done, except for the breath test, has been negative. And my symptoms improved (twice now) after antibiotics... I hope you find somewhere that will give you the breath test (I'm not in the UK so I'm no help there). It may be possible to get a false positive, but it's better than nothing... if you can, maybe get a small bowel aspirate because I think that's the "gold standard" for SIBO diagnosis right now.

 

[Hester]

Some doctors believe the breath test is reliable but the clinical literature suggests that it is not. There is a high degree of false positives and false negatives (20 to 40 percent in different trials). You can have it but why spend the money and time if you already know you respond to an AB? There is NO 100 percent proof of having SIBO. You can have the breath test and if it is positive, you will be on antibiotics which may or may not help and no professional knows which AB is best nor for how long. Many diseases are this way. Diagnosis is based on a combination of symptoms, ruling out more serious issues through biopsies/lab/pathology, response to therapy, observation and the clinicians' experiences. My latest GI doctor believes in long term AB treatment up to 3 to 6 months to kill the bad bacteria that has infiltrated the small bowel along with (believe it or not) a laxative or colon cleanse to clean out the bacteria. (This is why many of us with SIBO have felt better after a colon prep.) I have also learned to avoid the proton pump inhibitors and antacids because they make SIBO worse as do most dairy food. There is a recent peer reviewed article regarding the PPi's and how they made a population with SIBO worse. We need our stomach acid to kill the bacteria in the SB. Also, probotics and prebotics are controversial. They tend to make me worse or do nothing at all. I took Tetracyline for 6 months 2000 mg a day and have also gone on an organic diet which has made me feel much better. Much of what I have done/did was my decision along with the expert opinions of my doctors and literature. I think we all need to be OUR own best advocates. You/we will be hard pressed to find ONE doctor or ONE perfect therapy to help you/us. Also keep in mind that one in four people cannot tolerate dairy food. I suffer with gas, bloating and diarrhea anytime I eat yogurt, cheese, milk, cream, (dairy), casin, cassinate (in packaged foods), or whey. There are others here that swear they got better taking Kilfur (sp?) or Align both of which are dairy related products. Each of us and our systems are unique. What works for one is not going to work for another. This does not mean there is no cure, nor no hope or treatment. Do not give up but be systematic in your detection. You may want to keep a notebook of all that you have tried, eaten, taken and the result. Do not make changes too quickly. I think three weeks is reasonable to see if a product/therapy or dietary treatment may be working or hurting. You have to follow your instincts as to what you think is best for you. Good luck.

 

[jmc09]

Sorry for my ignorance but is a small bowel aspirate were they remove fluid from the small intestine and test it for the bacteria causing SIBO?I would like to try ABs in a bit more detail but my gp is bound by his code of practice to not hand out ABs like sweets/candy and hope for the best.Maybe my gastro consultant will be a bit more positive with me.Strangely I haven't taken many ABs in my lifetime as I'm allergic to penicillin,not really badly though,so I shouldn't find resistance problems from taking too many different types.Thanks for your advice.

 

[Kathleen M.]

Aspirate is take a bit of fluid out and then check it for bacteria.

 

[Hester]

I had the aspirate and it was negative! Yet I have SIBO. It is correct about the test removing fluid from the upper SB. Again, though, it is not a full proof test meaning if you test negative you still may HAVE SIBO just because you cannot gather fluid from the whole SB. It is impossible to aspirate the entire SB. There is a SIBO theory the bacteria embeds itself into the lining of the small bowel rather than "circulating". This is what also causes permability in MD terms and Leaky Gut in Holistic terms. It is a shame your doctor refuses to practice empirically based on YOUR experience and HIS observation especially since you responded to the AB yet he insists on finding a test to prove it. There is no 100 percent test. There isn't even a test to confirm it 70 percent of the time. So you might risk testing negative and have SIBO and find in the UK that doctors refuse to believe ABs will help you. My personal feeling is that is just wrong. I hope you can find a better doctor with a more extensive knowledge base in GI diseases. My fear is you will test negative and your doctor will simply disregard the FACT you felt/got better on ABs. He will clump you in with the unresponsive IBS group. If you had weight loss, gas, bloating, urgency and persistant/chronic diarrhea without constipation - these symptoms are more SIBO than IBS. The clinical literature is very clear that IBS sufferers rarely lose weight while SIBO do. Obviously, sprue and dairy intolerance are different entirely. Also you probably do need to rule out a pathologic abnormalty in the gut lining/content. Sprue has a test/biopsy of the upper SB while diary does not. It is good to rule out more serious or clear-cut diseases. Not that SIBO is any less debilitating. How sad that many doctors write off how we "feel" and call this disease psychological rather than physical. I realize anitdepressants do control the diarrhea but this control has little to do with psychology and eveything to do with the amount of serotonin and dopamine receptors in the gut. (Yes, IBS can get worse with anxiety because of the gut/brain connection.)IBS and SIBO can go hand in hand but they can also be completely separate diseases. There are many, many reasons why someone might have chronic diarrhea. Hence, all the different tests and treatments. If you require a few peer reviewed articles on the topics I have discussed, please PM me with your email. They are .pdf documents from various journals. You will need Adobe Acrobat on your software to open them. I needed the evidence in a U.S. court to prove my case against an insurance company who denied my chronic diarrhea was a disability that required time off work and/or further treatment.

 

[Ste h]

Hey yeh I had colonscopy and endoscopy but the doc didn't touch the small bowel. Fast forward two years and the last colonscopy went into the small bowel for the fluid and biopsy, hopefully it gets some results, if it comes bk negative I'm going to ask for breath test as this isn't ibs which I have. I get results on Thursday will keep u posted if I get sent anywhere different for the breath test or if I go on abs.

 

[jmc09]

Good luck Ste and keep us posted.BTW I'm having a bladder investigation this week and if an infection is found then I could be given Cipro for it so I'm keeping my fingers crossed as I may be able to try ABs for something different.

 

[Moises]

Hester,I appreciate your contributions to this and other threads. Very informative.