SIBO

[mickeymouse42]

Can a MRI scan detect small intestine bowel overgrowth?

[Nackapan]

I dont think so.Ask .

A stool sample.

Blood test.

Endoscopy is what I've heard of.

[mickeymouse42 in reply to Nackapan]

I don’t think there’s a stool test or blood test. Endoscopy to collect sample for analysis requires consultant plus nurses so they are on hold because of COVID.

[fbirder]

I believe than an MRI scan can be used to look for structural changes in the small intestine that may be caused by SIBO, amongst other possible causes. A breath test is a better way of diagnosing it.

[mickeymouse42 in reply to fbirder]

This NIH article says that the glucose breath test is more accurate than the hydrogen breath test:

ncbi.nlm.nih.gov/pmc/articl...

“Therefore, it is not surprising that the sensitivity and specificity of the lactulose hydrogen breath test in detecting SIBO has been reported to be only 68% and 44%, and for the glucose breath test 62% and 83%.”

[Cherylclaire Forum Support in reply to mickeymouse42]

That might explain why my SIBO breath test (hydrogen) was "inconclusive" : results indicative of either SIBO or "fast transit" (indicating IBS).

Since initially the test was organised to rule out SIBO as the cause of my raised methylmalonic acid (MMA), my GP gave me trial antibiotics. Beyond an adverse reaction to the antibiotics - vertigo, headache - nothing really changed, so I guess SIBO was crossed off the list. The gastroenterologist then said it must be IBS - which, she admitted, only explained one of my symptoms. I think my GP had crossed IBS off her own list years before. All a bit disappointing at the time, probably for both of us.

My constantly raised MMA , it was then decided, was "my normal".

It wasn't: after three years of regular B12 injections, on the sixth test, it was finally comfortably within normal range.

The MMA test (blood) is not available at all hospitals - my GP had to try 3 before being successful - but raised MMA is a good secondary indicator of B12 deficiency and/or SIBO (which will rob host of B12 and other vitamins), once renal problems have been ruled out by blood test. Ordinarily, MMA should return to a normal level as soon as B12 is replete -certainly on completion of loading dose- but mine was found to be raised by GP 8 months after B12 treatment started and remained raised. A DNA test did not find a genetic cause for this.

All of these were NHS tests.

[EiCa in reply to fbirder]

Agreed. And breath tests are not consider that accurate. The endoscopic diagnosis is invasive and not that accurate either. They have to get a sample from the small intestine and it can miss the mark. The best diagnosis is really eliminating fermentable foods, sugar, carbs and seeing if you improve. You also can try a trial of an antibiotic. If it helps it is likely SIBO. Unfortunately it almost always comes back. I just watched a podcast by Dr. Datis Kharrazian that explained SIBO and treatment well.

[Narwhal10 in reply to EiCa]

Dr Datis Kharrazian is great

[Nackapan]

Sorry was thinking of: H- pylori

[Hidden]

No it can’t. You need a breath test for SIBO. A small bowel capsule endoscopy can check for damage to the small intestines but it can’t tell you how that damage was caused. I have had SIBO and a small bowel capsule endoscopy. I have also had the breath test and in my case the lactulose worked better.

[deniseinmilden in reply to Hidden]

I just wanted to take the opportunity to thank you again for your advice here! You have been a life saver.

Because of you and thanks to your help I have managed to get a referral to an Addenbrooke's gastroenterology team who have diagnosed chronic pancreatitis and PA, ruled out IBS and have at last treated me effectively for SIBO.

Unfortunately I've managed to get an infected lymph gland at the moment so I'm not feeling the full benefit of controlling the SIBO but, oh my goodness, is it an improvement!

How are you at the moment?

Are you still undergoing tests or have you managed to get enough treatment for a stable situation?

Thank you!

[Hidden in reply to deniseinmilden]

Aww bless you Denise. I was just sharing my own journey with PA and for some people with PA it seems the pancreas is involved as it is key to digestion. I have now had 3 MRCPs and 3 CTs and they say my pancreas is not damaged. They deny pancreatitis (I am not sure how they diagnose that other than through symptoms and pancreatic atrophy??). But my fecal elastase was 74!!! So I’m on Creon and I take HCL Vit D and probiotics and I kinda manage with that but I feel 30 years older than I should. I plan to keep getting checked every 2 years as my gastroenterologist (Edinburgh based) says there is no surveillance for people with a compromised pancreas. He expected a degree of atrophy in mine but perhaps that’s to come? I hope you are getting good treatment; I know that’s a great teaching hospital. Thanks for getting in touch and all the best!

[deniseinmilden in reply to Hidden]

I'm glad you've got the Creon - it's magic, isn't it! My last fecal elastase when I was on the Creon had got up to 33 and I think it's probably better than that now I've increased my dose. It's definitely worth keeping your pancreas monitored. I'm sure the histology and therefore enzyme production changes long before the pancreas actually physically diminishes enough for it to show up so unfortunately you could have a dx of CP in time.

At least if you've caught it early you can very strictly have no alcohol and do all the dietary things to help, so that at least you get worse as slowly as possible! 🙄

I've drunk almost no alcohol ever and have always had the best diet for it because of my heart and liver already being shot, so I know I haven't done anything wrong and I know it's not the whole answer but I guess everything helps!

Good luck and keep in touch!

[Hidden in reply to deniseinmilden]

Thanks Denise. I’ve got a catch up with my gastroenterologist soon so I will ask him about this. It’s just another area that needs more research! All the best.

[EiCa in reply to deniseinmilden]

Hi Denise,

How did they treat you effectively for SIBO? How did they diagnose chronic pancreatitis? I have a fecal elastase of 84 which is very low but a CT scan of my pancreas showed nothing abnormal so it is being dismissed as a probem. I have pain in my pancreas sometimes after eating. I do not absorb food well at all. I feel certain I have both SIBO and pancreatic insufficiency, at least, which affects my absorption of all vitamins and has given me severe B12 deficiency.

[deniseinmilden in reply to EiCa]

Hi!I have only just had the first trial treatment for SIBO of a fortnight's metronidazole. After 9 days the +ve effects were really noticeable.

Another drug they might use is Rifaximin.

When I was trying to sort out my desperate need for so much B12 and other vitamins and minerals, my Dr said if I could find a consultant I wanted to see he would refer me.

After about 3 years of looking I found one and thankfully only an hour's drive away.

By then I also had steatorrhea, obviously no digestion and terrible malabsorption - but almost no pain.

I had a course of Nitrofurantoin and suddenly (overnight!) everything improved. Martin (also on this post) told me about SIBO and so I asked, and got, the referral.

They booked me in for an ultra sound of my upper GI tract and that showed that my pancreas had atrophied and my liver texture was coarse. My liver packed up when I was 18 so that probably explained that, but they then did an MRCP and a MRI to see what was causing the shrivelled pancreas. Thankfully everything seems OK (no cysts, tumours, stones, blockages or inflamed ducts) - it's just packed up!

My fecal elastase was 33.

They said I have idiopathic chronic pancreatitis and have given me a supply of Creon digestive enzymes to help digest my food which is a huge improvement.

As last year went on I was getting worse and worse gassing, bloating and pain and I was afraid to eat anything - and the malabsorption was getting worse. I spoke to Addenbrooke's in early January and they gave me the metronidazole. It seems to have done the trick on the SIBO. 🤞

[EiCa in reply to deniseinmilden]

Thank you both, Denise and Martin. I don’t know why no doctor is taking this pancreas thing seriously but I am in serious pain and getting more and more malnourished. I appreciate the suggestions and advice from both of you. Now to find a doctor who doesn’t dismiss this as stress and IBS.

[deniseinmilden in reply to EiCa]

Ah - IBS is a serious complaint and one of many IBD problems for which there is a definitive blood test. I know because I've been tested and had this ruled out. Whether you can get this tested too, who knows! Worth asking for though as many symptoms can be alleviated or at least helped with medication.

I'm really sorry for you and completely understand your plight - for years I've felt that I've been gradually dying and didn't know specifically why or if anything could or should be done. (I'm not quite sure that knowing I've got lifelong suffering ahead of me and nothing can be done is much better, but, hey! 🤪😁)

The SIBO is truly horrible. The CP isn't good but it's not as bad as the SIBO unless I get a flare. Had both together for a few weeks at the end of last year and I was starting to think that just getting covid and snuffing it was a better option so it is no joke.

A bad CP flare can become Acute Pancreatitis and that's often life threatening itself. There's a very good Chronic Pancreatitis Facebook group but don't go there if you are easily put off by other people's health problems as some cases are horrific.

It does, however, hi-light the fact that there is very little knowledge about or understanding of CP and the funding for research into pancreatitic complaints is minimal.

A few mornings ago BBC Breakfast followed the story of a lady whose CP had turned to pancreatic cancer because, due to covid, she didn't have the surgery that she needed on time. Grim stuff. It was good to see someone had raised awareness though as their legacy, if very sad.

SIBO is even less known.

So along with the subsequent vitamin and mineral deficiencies as a result of the malabsorption, we are all suffering in a very little known, understood or even accepted area of medical science. Sorry. As far as I can tell we're better off in Britain than elsewhere in the world.

And on that happy note... I'd better make the most of the last rays of sunshine before it gets cold tonight!

I'm here if you want to say hi at any time and I wish you luck in your quest for help and answers.

[EiCa in reply to deniseinmilden]

Thank you so much Denise. I may be back. Does IBD mean irritable bowel disorder or (here in the US) there is a term IBS-C or IBS-D which differentiates between constipation and diarrhea. Rifaximin really constipated me which made my IBS-C worse.

[deniseinmilden in reply to EiCa]

Yes, irritable bowel disease or disorder.

There are lots of complaints about the pancreatic care in the US - lots and lots of people from your continent are on the group (but I appreciate the US has just a few more people than Britain! 😜).

If you are getting constipated the problem may involve your colon too.

I'm sorry but I'm so new to this I'm not much help!

I do wish you every success and hope you feel better soon. X

[Hidden in reply to EiCa]

I got rifixamin for my SIBO. It’s a Avery specific antibiotic so it works only in the small intestine and doesn’t cause widespread damage to your micro biome like other antibiotics. It’s use is quite new in the U.K. it can be used together with metronidazole if your SIBO is methane dominant. If your elastase is 84 then you need urgent treatment and just because your pancreas showed no damage on imaging that does not mean it is ok as your doctor has said. If this came from a gastroenterologist I’d have them reported for malpractice. The guidelines are clear. Elastase of below 100 is severe. I have this. My pancreas is also clear on imaging . I would follow this up so you get the treatment you need.

[deniseinmilden in reply to Hidden]

More of your sound sense!

I must follow up on mine (I've just got a new appointment through... For July!) and see if some of this will help me. They did mention it.

Thank you again.

[Hidden in reply to deniseinmilden]

My zoom follow up is next Friday do we will see what he says. Keep safe!

[deniseinmilden in reply to Hidden]

Good luck!

And you!

[Hidden]

Breath test I meant. Not sure how ‘great’ it will be....

[deniseinmilden]

No it can't, but it can rule out other possible causes for the symptoms - especially checking your pancreas, gall bladder and biliary system. It is important to get these checked as problems with these are also serious and can be a predisposing factor for SIBO.

My gastroenterology seem excellent (recognised as world leading) and they have just heard my symptoms and suggestion of SIBO (having seen it mentioned in posts on here and having had good results with antibiotics previously) and agreed a trial of 2 weeks of metronidazole.

For me it has been pretty revolutionary and conclusive. I now need to report back to them and hopefully move to the next step in the treatment.

[mickeymouse42]

When SIBO is present, Folate levels are said to be often elevated and Vit B12 low. Is that what people find? Leaving out diet, what's the main reason for low Folate levels?

[Hidden in reply to mickeymouse42]

Bacteria feed off b12 so that’s a distinct possibility. It did not affect my folate levels though. SIBO affects absorption of vitamins so it potential could affect folate and other vitamins though.

[fbirder in reply to mickeymouse42]

The main reason for low folate is dietary. Not eating your five a day.

Other than that low stomach acid (such as with PA) or a pancreatic problem can result in poor absorption of dietary folate (but not folic acid).

[mickeymouse42]

Thanks for the reply. Dietary seems unlikely as other half has allotment (kale is very good at this time of year). Pancreatitis is ruled out by normal faecal elastase test. Not sure I can get test for low stomach acid at the moment. What's the best way to increase stomach acid?

[mickeymouse42]

I was watching Professor Hunter's 2016 conference presentation where he discusses SIBO and shows an image of the small bowel which he says is normal; the image is shown 3:51 minutes into the presentation. Maybe I am misunderstanding his point, but he seems to be suggesting that imaging technology is relevant.