Sibo diagnosis?

[Forestgarden]

Hi there, My son (17) has many ibs symptoms and has been severely underweight for years. We've tried elimination diets (dairy makes a difference), We've had blood tests to look at absorption issues (bit low in iron), he's been referred to paediatrics (no life threatening issues), referred to dieticians (not much help). Now finding it a bit difficult to swallow. Phoned GP to ask about sibo test to be told not available on nhs. He's hopefully getting a referral to gastroenterology. Sibo seems highly likely in everything we've read compared to his symptoms so we'd like to get him tested. Do we need a referral to get a private test? Can anyone recommend a reliable private test? Are any of the home tests reliable? Even if we get a positive sibo test, how likely is it that we can then get him a course of antibiotics? Lots of questions! Thanks in advance

[bluejourney]

It’s not true you can’t get a SIBO test on the NHS. You just need to research and find the right hospital and department. You need to get one that tests methane as well as hydrogen. I had one in 2017 at the Royal Brompton allergy clinic, and one at the Chelsea and Westminster Hospital gastroenterology department. My local hospital in Epsom, only offered a hydrogen breath test so I declined that one. Actually in the US some centres are actually testing 3 gases now, called Trio-Smart, which includes hydrogen sulfide, but the UK doesn’t seem to have caught up with that yet. My advice is don’t always believe what you’re told about SIBO/IMO. You’ll get a lot of fobbing off. Do your own research and then pursue what you think is right. Dr Mark Pimmental in the US is a good source to follow. He does a lot of research on SIBO/IMO, the microbiome, and he was first a microbiologist then a gastroenterologist, so knows what he’s talking about. Good luck.

[Forestgarden in reply to bluejourney]

That's interesting. Thanks. I guess we need to pursue the gastro referral first and then push for the sibo. I'm usually on the thyroid forum so well used to getting fobbed off by the NHS!

[xjrs]

Probably best to wait for your gastro appointment and ask them. Unfortunately currently there are no accurate SIBO tests. You can get false positives with the breath tests (which is what happened to me).

A pointer might be if your son tries a trial of probiotics that have been studied for IBS such as Alflorex. If a 3 month trial of Alflorex makes your son's situation far far worse (after the 2-4 week bedding in period where there might be some natural backlash), this may be an indicator, since you are adding bacteria on top of bacteria. However, if Alflorex improves the situation, it is more likely to be IBS (and this is statistically far more likely to be the case too). I have no affiliation with Alflorex but I've tried many probiotics over the years and this has made a significant difference to my life.

I am telling you all this since I made a big mistake purusing SIBO from the get go (as advised by people who are making an industry out of this). Trying to treat SIBO (when I didn't have it) made my condition much much worse than when I started out.

SIBO is not as prevalent as some say, but it does exist. Your son will only have SIBO if he has one of the predisposing conditions, since it has a list of distinct causes. The causes list would need investigating first. If something in the cause list is found, that would need treating first otherwise it is a waste of time treating the SIBO since it will keep coming back. The cause list is below - might be worth working through with your GP and/or gastro. Note that the first four causes of SIBO in the list below should be identifiable through a small bowel MRI scan (so might be worth asking the gastro for that):

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

Cirrhosis

Fibromyalgia – widespread pain

Rosacea

[Forestgarden in reply to xjrs]

This is useful thank you.

[IzabellaOlszewska]

have you read the recent research on EnTEROSGEL ? It’s now available on prescription from GP or gastroenterologist, but also over the counter from any pharmacy. Basically it’s an intestinal adsorbent and very safe even for newborns , it gently cleanses the gut from molecules that cause those awful symptoms IBS, pain , diarrhoea, bloating, and it’s the first treatment in 15 years that was added by NHS to prescription due to amazing results , helps 89% if patients. Read reviews on Enterosgel , amazing people share their stories and how it helps, especially children should definitely try its drug-free !

[Forestgarden in reply to IzabellaOlszewska]

Thank you. I'll look into this