Has anyone been diagnosed with SIBO here?

[jimb0123]

Hi All,

I've been following a FODMAP diet for around 3-4 months now and it has made a huge improvement in terms of energy levels (which was my biggest problem).

I'd say I was at 50% energy and now I'm more like 85%- it would be nice to get fully back up to speed and not have to worry what I consume as well (alcohol, caffeine and FODMAPS send me back to square one.

I've read about SIBO (small intestinal bacterial overgrowth) but any NHS staff (doctor, gastro consultant, gastro registrar) I speak to are reluctant to confirm it exists and what the optimal treatment plan is.

Has anyone actually been diagnosed with SIBO and given any treatment? Obviously the FODMAP diet is helping me but I'd like to just return to normal life!

Thanks,

Jim

[Hidden]

Hi Jim,

I had a SIBO test done at Winchester hospital only 2 weeks ago, so I can confirm that there definitely is such a test even if your doctor won't! My result was negative, so no quick fix for me, but keep pushing it, it's well worth having done.

Roz

[Ibsr]

Roz have you also had the hydrogen breath test?

Just want to make sure I am pushing for the right tests ( the dietician didn't know what SIBO was).

[Hidden in reply to Ibsr]

The SIBO test measures both hydrogen and methane and if either or both are above a certain level this indicates intestinal bacteria, so it's just the one test for all.

[jimb0123]

Oh thanks Roz,

Was that the hydrogen breath test? I got a really wishy washy answers from the registrar I was talking to- he seemed to be saying whatever tests they have aren't that reliable and don't tell them much. I couldn't get an answer on SIBO he just said that FODMAP helps 70% of IBS cases....

I also asked about refaximin but he advised that it is very expensive and NHS trusts put up barriers to prevent prescription except in extreme cases because it costs so much...

It feels like we are in an odd situation where the US is conducting lots of trials in this area but the UK medics are reluctant to endorse the research.

Thanks,

Jim

[Hidden in reply to jimb0123]

The SIBO test measures both hydrogen and methane and if either or both are above a certain level this indicates intestinal bacteria, so it's just the one test for all.

I recently increased my IBS-D control on the FODMAP diet from 80% to 95+% by cutting out rice and oats as well, in fact the only grain I can eat with complete safety is corn (maize) - worth a go perhaps? The other products that are no good to me are the 'free-from' and 'gluten-free' processed foods, as they all contain shedfuls of other c**p!

Fortunately for me alcohol has little effect on my symptoms with the exception of dry red wine which is a real no-no. Vodka treats me very kindly.

Yes, it's really irritating that the NHS won't get behind IBS properly, it's taken them long enough to accept FODMAPs. Just think how much money they'd save by doing some further in-depth research and giving us all a proper diagnosis instead of palming us off with the catch-all term 'IBS' for a set of symptoms they don't understand.

[jimb0123 in reply to Hidden]

Hi,

Interesting- I gave up oats a while back as they clearly weren't agreeing with me (I switched to buck wheat for breakfast with maple syrup and pumpkin seeds) but I *think* I'm ok with rice!

The only caveat with the FODMAP diet is that it's meant to be a temporary exclusion diet- the good bacteria feed on FODMAP's so it's not actually an optimal diet....

[Hidden in reply to jimb0123]

Well, there are no silver bullets on offer!

The idea of the low FODMAP diet is that you stick rigidly to it for a period of 2 -3 weeks and, if at the end of that period, you've got a big improvement in your symptoms, you know that your problem foods are within the 5 carbohydrate groups you've been omitting.

You then try re-introducing a group at a time to try and pinpoint one or more of those which are affecting you.

I've found that I have hardly any intolerance of lactose - whilst a big bowl of ice cream doesn't go down too well, small amounts of milky foods are fine. I can also eat wheat bread 2 or 3 times a week with no bad effects and so on.

In short, you have to clear your symptoms and then work through a food plan until you reach a personal optimal tolerance diet.

Patsy Catsos's book, 'IBS - Free At Last' is well worth reading for this sort of info.

Hope this helps.

Roz

[Ibsr]

Thanks for the info Roz, think I am being fobbed off too with just the hydrogen test. Seeing the gastro in a couple of weeks so will have a push there.

Failing that probiotics and enzymes before I try reintroducing anything.

[angbri]

Hi! I was tested for SIBO & came back with extremely high results. I am with a naturopathic dr that specializes in gastro. I am on the natural antibiotics,(traditional is very expensive) probiotics & special diet for 3-6 months. The antibiotic will kill quite a bit of the bacteria but not all. So on the special diet, your not feeding the bacteria & so the rest will die off. I would say to please please get tested, majority of Ibs patients go un diagnosed. This is something you should not live with & something is causing it. I am excited to b on the road to healthy & happy

[IV-cross in reply to angbri]

What natural antibiotic?

[SB1000 in reply to angbri]

Just seen this old post and wondered how you are now? Did you cure your sibo?

[jimb0123 in reply to SB1000]

Hi, I've been ok, minor relapses corrected by FODMAP diet and other healthy life style choices. That's until four months ago a few wrong turns triggered a relapse which I really can't shake it this time. I'm going to see if I can have another course of antibiotics as it's making me miserable and unproductive.

[SB1000 in reply to jimb0123]

Thanks for the update. So have u lead a fairly normal life until recently? My stomach is getting worse daily and I am struggling to see the light at the end of the tunnel!

[sickandsore]

Wow this thread is of great interest to me as also been following the low fodmap diet and had a really nasty blip a couple of weeks back and ended up in A+E fobbed off with morphine again which of course just bunged me up and made the symptoms go on and on....I saw the dietician today and shes convinced somthing else is going on, ive never heard of SIBO before, im foing back to the consultant in June so will push to see if I can be tested for it..do GP's also arrange for this test or even the dietician??? im not sure where to go really. the dietician feels I should see the Gp again and maybe be prescribed a probiotic VSL3,is the one they recommend. Ive ben tempted to try symprove but itd cost me £21 per week, which is way out of my price range with 3 children to look after as well

I have to say though that I tried re-ntroducing wheat last week and blimey did I feel really tired the following day like Id been hit by a bus, my bowels were def gassier and a little more frequent than Id been in a long time so theres def somthing with wheat that my body doesnt like..also dairy i tried some delicious but creamy ice cream and had the worst migraine and bloating afterwards literally within a few hours...so the diet has def done me a few favours in identifying triggers but im not quite as well as Id hoped to be by now...

[jimb0123]

Kerry thanks. The key is that there isn't any silver bullet but I find IBS to be a really unhelpfully broad umbrella...

[jimb0123]

Yeh the origins of the problem for me were a parasitic infection of something called blastocystus. I was treated (successfully) with Metronizadol and then suffered dysbiosis.

Two things I feel aggrieved about are:

a) That my GP discounted the possibility of gluten intolerance due to negative celiac test results and instead put me on a long term course of proton pump inhibitors (PPI's) whereas gltuen was aggravating my gut

b) That I wasn't advised to take probiotics whilst taking the metronizadol which can help protect against IBS/SIBO

I'm sure that PPI's helped foster an environment for SIBO...

[Moonchild23]

Hello Jim,

I had suffered terribly with IBS for around 4 years, until I recently got a different and unrelated problem for which the doctors gave me one heavy dose of antibiotics. Miraculously this seemed to more or less eradicate all my IBS symptoms overnight, I also lost 2 kg in 2 days. I can only assume that maybe I had this, and the antibiotic I was given in one strong dose killed it. I am hoping it doesnt come back, but if it does at least I have some clue as to how to cure it. Good luck!

[GlutenSchmuten]

hi jimb0123. I was diagnosed with SIBO by and NHS gastroenterologist. She prescribed antibiotics which seemed to clear the sibo but I’m now about to embark on a low FODMAP diet for 8 weeks. From what I’ve read sibo has to have a root cause because normally food passes through the small intestine too quickly for bacteria to colonise.

[jimb0123]

Hopefully that's you fixed. I'd recommend proceeding cautiously - it looks like my problems were caused initially by food poisoning. What seems like legitimate research cab be found here: youtube.com/watch?v=aA-Bj4z...(Not working as expected?)