Does anyone have SIBO and IBS?

[rustydog]

I was first diagnosed with IBS, 25 years ago.

Since this time I have been back and forth to doctors and gastroenterologists, had endless tests, tried every IBS diet, remedy and medication etc and always told it’s ‘just’ IBS and that I need to learn to live with it etc (difficult when you have symptoms every day!).

Over the years I have enquired about SIBO but always told that it’s highly unlikely that I would have that (even though I suffer all the symptoms).

Last month my gastroenterologist agreed to send me a breath test kit (I’m sure it was just to shut me up lol) and lo and behold it’s come back positive for SIBO.

I have an appointment in a month to discuss the findings.

I’m not sure if this means I have IBS and SIBO or just the SIBO?

Has anyone tested positive for this?

[Hidden]

IBS is not a disease, It is what you are told when they don have any idea what you have.

It is a catch all phrase related to everything they don't know about our stomachs.

Concentrate on the SIBO as it is a diagnosable ailment.

[Sallybt]

Yes, I have had IBS for 30 years and SIBO for 18 months. I saw a Naturopath for advice. You have to eliminate certain foods. Mine is brassica veg, porridge, legumes, certain fruits everything I use to eat everyday to keep healthy. Everyone different. Hope you get some good advice. You do learn to live with it. I still take herbal medication.

[rustydog in reply to Sallybt]

Did it help reduce your symptoms?

[Sallybt in reply to rustydog]

Yes eventually, does take time and one thing I have to do is have regular BM ,Constipation can cause all sorts of problems. It isn't easier when you can't eat fibre.

[Sallybt in reply to Sallybt]

I found probiotics including Alflorex) and pre biotics made me worse. I take cider vinegar for low a acidity etc it also helps with the nausea. I feel good most of the time now as long as I'm sensible.

[xjrs]

Unfortunately SIBO breath tests are not accurate. I tested positive and it worked out that I did not have SIBO in the end. It is a very controversial subject.

First of all you'd need to have one of the predisposing factors for SIBO. If you don't have one of those you definitely won't have it. In fact, those factors need treating first otherwise it will keep coming back - i.e. it is pointless trying to treat SIBO on its own.

Note that the first four causes of SIBO in the list below should be identifiable through a small bowel MRI scan:

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

Alongside having one of the causes, another sign also might be is whether taking probiotics over a period of time makes your condition far far worse (i.e. adding bacteria on top of bacteria in your small intestine).

If you have one of the causes and that has been treated, you could work with your gastro regarding a trial of Rifaximin - though I am not sure gastros in the UK are allowed to prescribe it. I had to get mine from a private prescription - it is extremely expensive and it did nothing for me since I didn't have SIBO. If this does nothing, again that could point to not having it.

[rustydog in reply to xjrs]

Thank you. I am waiting to see if I have Endometriosis which may, potentially, share a link. My gastro also believes I may have low stomach acid although we are not sure why. I have had a private gastro offer me a prescription for Rifaximin but have read it’s not widely available on the NHS. My NHS gastro appointment isn’t until the end of the month, so I will wait and see what she suggests.

Could I ask how you managed to discover that you didn’t have SIBO in the end?

25 years of this is really wearing me down, the last year has been just awful (I have had so many tests). I am absolutely desperate to find some relief as I have tried literally everything, I’ve exhausted all options, my life seems on hold (or forever ruined) until I can find something/anything which helps.

[xjrs in reply to rustydog]

I was diagnosed with SIBO using the breath tests by nutritional therapists, who I will never use again. They put me under every single SIBO protocol that you can think of, made me lose a stone in weight, destroyed my microbiome, made me really ill so that I became a shadow of myself. Every single thing they tried didn't work on me. The problem was, even though one thing didn't work, they kept trying another and another without actually thinking, well, she probably doesn't have it. I got a private gastro appointment for the Rifaximin. I then got transferred to the NHS and the gastro recommended a small bowel MRI scan. I worked through the SIBO cause list with him and absolutely I didn't have any of the causes and the small bowel MRI came back clear. They decided to re-run the standard IBS tests and my calprotectin became sky high (previous to being under nutritional therapy it was normal). I since found out that the regime they put me under (high protein/low carb/fibre diet) causes inflammation in the body. This led to a colonoscopy where they said my intestinal tissue was healthy but I had a long loopy colon which they diagnosed as causing my IBS-C. Additionally they diagnosed me with visceral hypersensitivity (IBS pain) (I was in agony from being blown up with gas from a CT colonoscopy). I have since been treated for both these conditions (Linaclotide for the pain/IBS-C and Alflorex probotic which I found myself) and I have been doing so much better. Also the fact that probiotics help me and not make things worse additionally means that I never had SIBO.

[rustydog in reply to xjrs]

Thank you.

I have spent a small fortune on nutritional therapists. They all have conflicting advise and as with your experience, most of the advise is down right damaging but I was pushed towards them as the NHS dieticians have been next to useless.

So far, I haven’t had good experiences with probiotics which has lead me to wonder if I do have SIBO as I have all the symptoms. This year I spent a small fortune on a comprehensive gut test which has shown I have more ‘bad’ bacteria than good/healthy, dysbiosis and candidia but that could simply be down to the fact I have lived on a very restricted low fodmap diet for years, which I know is not healthy but I can not function living any other way atm.

I have had years of endless tests, 2 colonoscopies, a gastroscope, pill camera endoscopy, san after scans, stool tests, blood tests……….It continues to be a long journey but I am determined to find something to help ease my symptoms.

Good to hear you have found some relief, that gives me hope.

[xjrs in reply to rustydog]

Maybe work through the cause list with your gastro to see if you have anything that might have predisposed you to it. Perhaps also ask for an MRI of your small bowel? Good luck.

[rustydog in reply to xjrs]

Thank you, I’ll print off the list and take it with me when I see her in 29/9. I did have a small bowel pill camera endoscopy last year, it didn’t show up anything.

[Antiques72]

Yes I did a breath test and was positive., I have IBS it seems people with one often have the other , they don’t know which one cones first .. I took antibiotics etc and saw a dietitian.. nothing worked , I tried lactose free , I tried everything but now I manage it on my own .. I stay off fibre even they they got me to take fibrogel for years , am very careful what I eat , often take buscopan 20 min before I eat and if it’s a bad attack I take buscopan until it eases . No doc or specialist has helped in the last 40 years.,

I take movicol every other day if I am going out anywhere and sometimes twice a day to make sure I am empty if am away for any length of time

[rustydog in reply to Antiques72]

Do you think you still have the SIBO?

[Antiques72 in reply to rustydog]

Probably yes … but I won’t see anyone anymore.. I have had colonoscopies endoscopies … had enough so just stick to the movicol almost every day and buscopan when needed , I am fed up worrying every time I go out so by emptying out I feel safer and can have a social life again