Tested for SIBO

[Bassem1979]

Hi

Has anyone ever had a test for SIBO (small intestinal Bacteria overgrowth)

[SjogiBear]

I am wondering if I might have this too as my IBS symptoms flared up at the same time as I had an outbreak of rosacea which I've not had for some time. I'd also recently come off ppi's and had to stop hydroxychloroquine for my Sjögrens Syndrome as it had started to affect my eyes. All in all a perfect storm! I'm just waiting for the standard tests to come back (foecal occult blood plus blood tests) ... I had a completely clear colonoscopy just under two years ago. I have gluten intolerance related to Sjögrens and my daughter has coeliac so lots of autoimmune issues that affect the gut. I have had IBS on and off for so many years now but only recently heard about this SIBO and have discovered it's a particular issue in Sjögrens patients. It will be interesting to hear from anyone who has had this test done.

Let's hope we can all find some ways to deal with this horrible condition very soon.

[Bassem1979 in reply to SjogiBear]

I believe u can get a home testing kit bits it’s quite expensive am tempted to pay but it’s knowing if anyone else has done the test and if the results where right before I spend that money. I do have the doctors next week and am going to ask about it and maybe I will get a referral but I guess it will be a long wait.

The worst thing is the not knowing what causes all the discomfort and symptoms and that the majority of gut symptoms are the same for all gut disorders.

[tony11173 in reply to Bassem1979]

Even if sibo is found, whats causing it ?. Isnt sibo a symptom?. I had a chat with my dr about bacterium and antibiotics. He said antibiotics is not the answer. I get neuropathy with my ibs, and i had antibiotics for a toe infection. Wsll the neuropathy stopped for some time.!

[userotc]

Yes I had the test but....... It was reported as positive but my further research indicated I wasnt. Long story short (I can explain technicalities if reqd), the test company agreed with me so reversed the decision.

So, in my case, it wasn't successful. But, if you have permanently bad, relevant symptoms eg gas, bloating (mine were intermittent), it may be worth doing. But obviously accurate diagnosis can be difficult and may need a practitioner.

[Bassem1979 in reply to userotc]

Hi Thank you

Yes I have them symptoms every day and at the minute I can’t see a light at the end of the tunnel. So that’s why I thought should I pay for this test and see if I have it. I will speak to my doctor on Tuesday and see what they say.

[xjrs]

These tests are not accurate. Please see my post in then link below which also points to another post about SIBO root causes:

healthunlocked.com/theibsne...

[Bassem1979 in reply to xjrs]

Thank you I have tried changing my diet, taking loads of different tablets and my symptoms never ease up. I just feel this is not IBS every day for 4 months now I have had issues with my bowels, trapped wind, excessive wind, excessive burping. Mixture of constipation and diarrhoea, I get all over abdo pain and near my belly button, I have also lost weight too. it all started out of the blue. For a long time I thought it was from my Covid booster but to be honest I think every day I click at straws as I want answers.

I have been reading other stuff and a few years ago I had thyroid issues and I think I might ask doctor to check my thyroid just in case it’s that.

I wake up every day and think here we go again and am getting so down with it all, really don’t want medication as that does help with ur gut especially if you already have gut issues.

[xjrs in reply to Bassem1979]

If you can, ask to be assigned to a gastro until they get your symptoms under control. No one should have to live like this on a long term basis. It might be worth looking at the list of root causes of SIBO that I provided in the links, work through the list with your doctor/gastro and get assessed or tested for each possible root cause. If they find something in the list that you have, that issue would need to be treated first. Good luck.

[HowNowWhatNow in reply to Bassem1979]

Good idea to get thyroid checked

[Gardenlover2020]

Hi ,My IBS-C symptoms got worse so I asked my NHS consultant for a Sibo test , it’s a lactulose breath test done in the hospital, it’s free & it shows if you have hydrogen or methane Sibo it’s important to know which one as treatment varies for each .

The appointment only took a few weeks to come through and I felt it would be more accurate than the home tests . I’ve had it done twice now , unfortunately I’ve still got Sibo methane , it’s quite hard to get rid of .

[Bassem1979 in reply to Gardenlover2020]

Hi Did your GP refer you to the hospital or was you already under a consultant ?

Did u have it done in Covid time ? Or before.

I just feel everything been delayed cause of Covid.

[Gardenlover2020 in reply to Bassem1979]

I was already under the consultant for ongoing IBS issues , the first breath test was done in December last year & the second one was at the beginning of February.I think I’ve been quite pushy & haven’t experienced too much of a delay with hospital appointments , but my consultant has been good so far in organising things for me 🤞

[A_IBS]

I was told by the person (NHS) performing the test that they’re not accurate. They only test for one type of bacteria and there are so many. My advice is to religiously stick to a FODMAP diet for as long as possible to reduce the bacteria. It’s taken a long time but I’m much better.

[Gardenlover2020 in reply to A_IBS]

They test for hydrogen and methane & if you stay on the FODMAP diet too long that can cause problems too , I should know as I’ve done exactly that and ended up with Sibo !

[A_IBS in reply to Gardenlover2020]

And as I’ve said, my experience is that with FODMAP I’m much better. FODMAP is designed to reduce the bacteria by starving it of prebiotic’s.

[SjogiBear]

I am also very sceptical about the plethora of home testing kits and private tests that are available. I've been referred to see a gastroenterologist on the NHS although realise this may take some time for the appointment to come through. My current flare up has lasted since last October and it really gets you down - it's not surprising that we clutch at any straws in trying to seek an explanation and then solution for our symptoms. Have you been referred yet as if you haven't, I would definitely suggest you ask your GP about this.

Those of you who have gone down the FODMAPS route, are you doing this with the help of an NHS dietician or just on your own?

[ArthurP in reply to SjogiBear]

Got my SIBO test through an NHS gastroenterologist and was also referred to NHS dietician. This was a few years back before COVID - since then have had a telephone appointment but now silence. Low FODMAP diet helped a bit but unfortunately my SIBO hasn't gone away despite 2 courses of Rifaximin. So currently proceeding without NHS/dietician help but struggling to find a diet that consistently helps.

[Loolops]

I was told by consultant you can’t manage fodmap without help from dietician , I waited 18months for consultation at hospital!!! I really do feel for you it just takes over your life hopefully you’ll get some answers soon x

[Sunshineonmyshoulder]

Based on my symptoms (diarrhea, bloating, gas, and weight loss), my gastroenterologist assumed it was SIBO and was willing to skip the testing and go straight to treatment with an antibiotic, but I wanted the testing (which was covered by my insurance). I came out hydrogen positive, and I'm currently taking rifaximin. Time will tell. You sound like a classic case, so you might consider just assuming you have SIBO and go directly to treatment, too.

[Bassem1979 in reply to Sunshineonmyshoulder]

Hi That’s what my symptoms are, no matter what I eat as I ve tried all kinds of diet changes.

I do however get left sided pain and some times constipation.

[Sallybt]

Yes I have been diagnosed with SIBO and I’ve been on the SCD diet for three weeks.I have no doubt I have it as I’m feeling so much better now. It’s hard to stick to the diet but you have to stop feeding the bacteria in your small intestine. I had the breath test which was expensive but so glad I did. I can see a light at the end of the tunnel. Also I take natural antibiotics prescribed by the Naturopath. There is a lot of info available online just Google SIBO and SCD. Hope that helps. I was in a lot of pain and my life was miserable. You do have to be determined to get on top of it by sticking to the diet.

[Bassem1979]

I am staring to think once you have an issue with ur gut it’s so hard to get back to normal. There seems to be no treatment about from changing ur diet and that does not help for all.

I first cut out dairy that didn’t help, then cut out wheat that didn’t work, then went gluten free that made me worse

Now just eat what ever because no matter what I eat or don’t eat am still in pain.

I just wish there was a diagnosis and treatment plan then get better

My abdo just feels so sore

[cj20uk]

I paid for one myself as it wasn't available on the NHS in my area. You do have to stick strictly to the instructions and diet before taking it. Mine did come back positive for hydrogen.

[Dodo21]

yes, recenTly and apparently it is positive😔