Confirmed SIBO diagnosis

I recieved a SIBO diagnosis recently which is recognised as causing IBS and is linked to traumatic injury in some cases as well.

https://www.ncbi.nlm.nih.gov/pmc/ar...of irritable bowel,SIBO), causes IBS symptoms.

https://www.frontiersin.org/articles/10.3389/fimmu.2021.800796/full


When I had my consultation with a Neuroscientist they also asked if I had mucus in my stools. Again, another sign of a physical problem.

 

What is involved in getting a SIBO diagnosis, and do the NHS test for and diagnose this now?

 

I had an NHS test some years ago - you have to drink some kind of sugar solution and then periodically blow into a tube to register the content of your exhaled gases.

 

I done my test privately. But please look into if the NHS do it.

 

I done the same @InitialConditions

 

Breath tests are done by gastroenterology units on the NHS. But as a caution, read the paper attached - or abstract. The reliability of these tests is probably poor.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856094/

 

This might be of interest :

https://sibosurvivor.com/sibo-breath-testing/

I had SIBO testing a few years ago but the test was only looking for one of the gases produced. I can't remember if it was hydrogen or methane. I wondered if it would have been more sensible to test for both.

 

My daughter did a private breath based SIBO test.
We did and still do have a gastro referral as symptoms were getting worse . Gut dysbiosis is an ongoing issue. It's like whack a mole.

Gastro clinics are running at 40% capacity locally and even with an upgrade to urgent we are not on the appointment list yet ( urgent upgrade in February from original referral in November 2021). Sadly consultants triage referrals and CFS on your notes often elicits a certain mindset .

An initial breath sample was taken and then Following a lactulose solution multiple samples of breath were taken over 3 hours ( you could do a 2 hour test) , 3 hours should mean samples are from most of the small intestine as the solution transits .
Hydrogen and methane were analysed.
Hydrogen was very high and methane was comfortably above the reference baseline figure.

GP would not prescribe Rifaxamin as she was concerned re drug tolerance and upgraded the original referral.

Private consult secured a prescription at a hefty price and it has been tolerated ok. Sadly I think given methane also being in the mix it should have been a two drug protocol . Some improvement but I don't think it's eliminated .

My daughter is now gaining weight more consistently which is a big positive.

NHS dietician has been good and has been chasing gastro referral and provided fortified drinks ( which are not so well tolerated) . She s keen to do a FODMAP elimination process. Looking at the list the biggest impact has been dropping onions, garlic and avocado, which we did post testing.

 

Have battled SIBO for about 10 years. The breath testing has its pitfalls, from memory a glucose (vs lactulose) test with a clear twin-peak response is the closest you'll get to a reliable diagnosis, barring an endoscopy & sample.

My SIBO symptoms ended up really quite severe, what originally could be managed with a low FODMAP diet ended up having to be very low carbohydrate too to avoid the excessive bloating, pain, reflux etc. after every meal. The breath testing was largely irrelevant because the consequences of eating carbs, especially FODMAPs, was completely obvious & repeatable in contrast to eating proteins and fats.

Rifaximin appeared to help somewhat whilst I was taking it, no lasting improvement. As others have noted it perhaps should've been combined with metronidazole. Any attempt to follow dietician guidance and reintroduce sugars to repopulate gut composition, even very gradually, ended badly.

Thankfully my SIBO problems have been gradually resolving over the past few years and with it my ability to tolerate more and more normal food types has returned again. Having had constant, gradual deterioration for about 6 years i'd be surprised if it just spontaneously got better - the two big changes around that time were initiation of Pyridostigmine (which presumably could've improved GI motility amongst other things) and Adalimumab.

Interestingly a gastro in an IBD clinic I attended noted SIBO in my history and said that it is increasingly recognised in IBD now too.

 

I think SIBO might be part of a lot of diseases, it's essentially just something that happens when the mobility in your gut is not good. I love the work of Mark Pimentel on SIBO, although he treats often with more than one antibiotic and my specialist says that that's too much for most ME patients.

For me, treating SIBO was a big part of getting more energy. Rifaximine treats SIBO perfectly, but it keeps coming back though. For now, I will just stay on rifaximine, although it is ridiculously expensive. No more extreme bloating, more energy, normal reactions to food