Hi everyone, I am new here and I was wondering if someone could recommend a sibo specialist based on their experience. I have been diagnosed with methane sibo by a private gastroenterologist and treated with several rounds of antibiotics. These would clear out symptoms well but they would return in few month.
My gastroenterologist suggested staying on Rifaximin bit I don't think it is the best way forward.
I would rather work with an integrative specialist to find and address a root cause.
There are a lot of SIBO Clinics but I would rather go by a recommendation.
Thank you.
Sasha
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sasha_nico
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Whilst I cant recommend such a specialist for treatment, Id suggest you consider a 2nd SIBO opinion based on my experience. Theres fuller details on HU which you may find via a search but essentially SIBO testing indicated I had it until we questioned it and the testing company CEO finally agreed that I didnt!. As my post(s) indicate, SIBO testing can be unclear.
Maybe a more independent Nutritional Therapist specialising in gastro could give the 2nd opinion as well as treat. I can send you links for some from which to choose, if you wish.
PS I applaud you moving away from an antibiotic-pushing gastroenterologist!
This is a tricky one since the tests for SIBO are not accurate. Also, you won't have SIBO unless you have one of the causes. If you do have SIBO, unless you treat the cause it will keep coming back - this means that the cause needs treating first. The only people who can check whether you have one of the causes is the medical profession. Please avoid anyone from the functional medicine/nutritional therapy community. They are not medically trained and the courses they go on can have very little in the way of prerequisites to join them. I know since I made this mistake myself and they made me seriously ill from their treatments and looted me financially. I ended up not having SIBO at all.
You could discuss the below cause list with your gastro:
Note that the first four causes of SIBO in the list below should be identifiable through a small bowel MRI scan:
Stasis: dysmotility – problems with muscle contraction in the gastrointestinal tract
Surgery (loops, vagotomy, bariatric)
Short Bowel Syndrome
Stuck open ileocecal valve (which sits between the small and large intestine) allowing bacteria from the large intestine to flow back into the small intestine
Achlorhydria – no stomach acid – unlikely if you can experience acid reflux. Additionally a faecal elastase test would show if you aren’t breaking down proteins correctly (which require stomach acid for digestion)
Hypochlohydria – low stomach acid – see above – the only real test is a PH test directly into your stomach, but many practices do not carry this out and home testing is inaccurate
PPIs – proton pump inhibitors for GERD/acid reflux – this is particularly related to long term use
Malnutrition – excess bacteria in the small intestine can compete for nutrients that your body needs
Collagen vascular disease – immune system inflammation e.g. arthritis
Immune deficiency
Advancing Age
Chronic Pancreatitis – this causes constant abdominal pain/fatty stools
Chronic antibiotic use
IgA Deficiency – identified from GP blood tests
Coeliac Disease – identified from GP blood tests
Crohn’s Disease – identified through GP tests and colonoscopy if GP tests indicate referral is needed
NASH – non alcoholic fatty liver disease –identified from GP blood tests
Thanks for providing the most comprehensive list of root causes of SIBO/IMO I have seen. I wish I had seen this before undergoing ineffective and painful antibiotic treatment.
I was ‘diagnosed’ with Methane Dominant Sibo in 2021 by a private Nutritional Therapist in the Uk. The tests were carried out by a company called Genova and cost me a small fortune. I was advised by the Therapist to take quite a large amount of tablets (not antibiotics) which amounted to over £250 and I think this monthly. My family talked me into leaving the therapist - it didn’t take much persuasion to be honest. Fast forward to now and I’m no better. I’ve found it nigh on impossible to discus Sibo with any of the 4 Gastroenterologists that I’ve seen since then. One actually put his wide-spread hand up to my face to stop me talking. Further down South I believe there are a few Drs who will treat you with Rifaximin, Metronidazole but unfortunately, the SIBO very often returns. I’ve never actually been diagnosed with IBS, but the last Gastro I saw Nov. 2022 said I had an IBS ‘kind of thing’. Very professional diagnosis - not. I’m pleased you have posted this list. I have now been transferred to Colorectal Surgery, pelvic floor unit. I’ve waited 8 months for this appointment, which should have been today 1st August and yesterday I receive a phone call from the Consultants Secretary informing me it’s been cancelled. Reason being, the Consultant I was seeing doesn’t deal with pelvic floor! It’s taken them 8 month to discover this. I’ve cried all day yesterday and best part of today. It’s an absolute sheer disgrace! When I eventually get to where I’ve been referred, I’m taking that list you’ve posted with me, but I’ll not be mentioning sibo!
I can understand what happened to you with the therapy, it is so easy to get sucked in by them. In the end, I became so weak from what they were doing to me, I noticed that I started to rely on them more. My friends and family were worried too. It's almost like being sucked into a cult. Luckily I had some light bulb moments when I realised that they were no good, giving inconsistent advice, even confusing themselves when interpreting the results. I started doing my own research and had to build up my own confidence again by relying more on myself and the vast amount of information and clinical studies on the internet.
SIBO is a really controversial subject. My gastro said that despite there being a money making industry based on it, true SIBO cases are rare.
It would be interesting to know what your symptoms are.
Have you had all the usual tests? An IBS diagnosis is definitive based on symptoms and also by running tests to rule out other things. There is no 2 ways about it:
Hi Sasha - I have terrible symptoms after a bowel movement, within about 20 minutes, I feel extremely dizzy, I can’t focus properly and I keep blinking . I feel as if my lower stomach (under belly button) is being pulled up as far as under my breast. 2 different Gastroenterologists, when I mentioned this, said the exact same thing - they punched their fist into the other hand and said “That is your colon contracting” 😔. I’ve got no medical knowledge, but I know that my colon is contracting, what’s making it ‘contract’? I got no answer from either of them. I’m 75 and I’ve never experienced this before so something is causing it. I want a colonoscopy but because the bowel tests are clear ( no signs of blood in poo) they won’t do it. I’ve been like this since early 2022 and I’ve never felt anything like this in my life. I literally can’t stay on my feet. I feel as if I’m filled with air, not like trapped wind, different feeling, but it is air. Very swollen under belly button, feels tender, back body has a lot of pressure. The dizziness and nausea is very bad. Please read my reply to xjrs - I was diagnosed with methane SIBO too back in 2021. Uk dr’s don’t want to know about it 😢. I’m pleased I’ve read your post and the replies. I don’t feel so alone now with this bowel movement malarkey. I hope you get the help you need, if you do please keep us updated. 🫶
PS The bowel symptoms usually last for hours. If I can keep sitting down the sometimes go away quicker but I’m left feeling as weak as a kitten.
The way you have been treated by your doctors doesn't seem fair to me. Just the results of a FIT test aren't enough of a reason to deny you a colonoscopy. In my opinion, they should have done one or two more stool analysis tests to check for any inflammation markers. The presence of any inflammation should have been a good enough reason to let you have the colonoscopy, just to see what's going on in there. Not just about bowel cancer, is it? There are other things such as IBD, or Diverticulosis. At least if you knew whether there was inflammation or not you would have some sort of guideline as to what to do maybe?
Louisa, thank you. What you have said is exactly what myself and my family have said. I actually had 2 FIT Tests. The first one was the one sent to older people, yearly or something like that - I’m 75. The 2nd was my GP surgery request. I have an appointment with the GP on 14th August and I’m going to mention all this. Thanks again .
Sasha, Crohns test was negative. My daughter is going with me to the pelvic floor clinic, once they give me another appointment!😡. She can be my mouthpiece, but I won’t be leaving that dept until I get the tests I want. Thanks again .
I am sorry to hear what you are going through. I sent you an email with the name of the consultant I had just in case if you want to try the same route. My symptoms are mild in comparison. Indigestion, acid reflux, diarrhea, malabsorption, unwanted weight loss, gas, bloating but not much pain. Have you been tested for Crohns? I think it's important to get a proper diagnosis first.
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