I have pretty much exhausted all tests etc via my NHS gastroenterologist.
I have had a colonoscopy, a gastroscope, a pill camera endoscopy, various ultrasound sound scans and a ct scan. I’ve been tested for coeliac disease, h pylori and had biopsies from the gastroscope.
I am low fodmap, avoid known trigger foods and drinks, have tried digestive enzymes, probiotics and all the IBS meds. I exercise and listen to gut directed hypnotherapy.
But still, every day I have symptoms (indigestion, bloating, gas, excessive gurgling, mix of diarrhoea and constipation, incomplete evacuation and an over all super, super sensitive gut. My gut and I fell out 25 years ago and have never been friends since 🙁
I keep looking online at the comprehensive stool tests like the one offered by Healthpath. It checks for various things like the microbiome’s health, microbe diversity, dysbiosis, bacteria, parasites, pathogenic bacteria. Malabsorption, zonulin levels etc.
The test is quite pricey though so I’m a bit worried that it may be a waste of time and money.
Just wondered what everyone thought? Has anyone had this done and did it throw light on anything which has helped you?
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rustydog
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Over recent years, Ive had 3 such tests done (tot ~£1k), 2 via Genova Diagnostics and 1 via Invivo - not specifically for IBS but to investigate gut-related issues linked to my medical condition. In summary, they at least confirmed gradual improvements which supported the nutrition and lifestyle protocol I was adopting.
But Id recommend you consider seeing a qualified, specialised Nutritional Therapist (as I did) to guide you along your journey whether that includes such tests or not.
Thank you. Sadly, have had my fingers burnt and a bad experience with a nutritional therapist. I ended up leaving £300 lighter! I would love to see a reputable one and am on a quest to find a good one I can work with. If you are in the U.K. and have any recommendations that would be great.
Sorry you had a bad experience which obviously can happen both for natural and allopathic healthcare practitioners. Im in the UK but cant recommend an NT specialising in gastro - mine was more generalised. But Ive listed below a wide range of options that graduated from the reputable College of Naturopathic Medicine so maybe you could use this in your research. Hope it helps.
Yes I have had a test done through Invivo which was recommended by my nutrionist. My nutrionist explained the results which showed I had high level of Zonulin which indicates gut permanability (leaky gut) & small amount of parasites. I was prescribed probiotics which made me feel worse. The problem is you have no idea if the treatment is working unless you feel better or have another stool test which is expensive. In my case I didnt.
Oh that must have been quite disappointing. Everything is just so hit and miss with this condition isn’t it? I’ve spent a small fortune so far, looking for answers.
I have a test coming soon via my NHS hospital, it’s good to know many trusts are offering the test now. How did the test go? I am really worried the lactulose solution will give me a bad tummy (well, worse than it already is!)
I asked my doctors practise for a sibo test but he said only gastroenterologists can do it! I have been waiting for one of those for over 15mths, so would have to get one done privately.
It was okay, I had stomach cramps about 30 mins in but it wasn't that bad. Its a bit boring , blowing into the machine (hand held device) every 15mins.
I made sure I sat near the toilets.
My results where boarder line. My Gastro wouldn't prescribe antibiotics. So in my case it was a waste of time.
Please don't bother with those tests. At best you'll be told you have a microbial imbalance or you'll be diagnosed with something that you don't have such as SIBO (there are no accurate tests for it). I went down this route. It cost me thousands of pounds. You have to go through nutritional therapists to interpret the results.
I spent ages going through the entire list of therapists available in the UK. Anything from GPs who had been struck off, to someone who said that I needed to discuss my past lives with her. All of these had the nutritional therapy qualifications and were registered. The qualifications do not involve the rigour that medical professionals have to go through. Dare I say that one of them who seemed highly qualified wasn't particularly bright. I kept seeing holes in her justifications for things or things she'd recommend suddenly she would then tell me I shouldn't do them, completely inconsistent and dare I say stupid. I worked with two of the 'best' that didn't costs £100s per hour (but not far from that). They both made my condition far worse. I ended up in real trouble health wise and pleaded with the last one to help me (since she made me that way) and she just disappeared - never returned any of my emails. Another spent half my session that I was paying for telling me about what fantastic holidays she takes, all while she was showing me a list of about 30 supplements I should take amounting to about £600 a month - looking at me as if what she was asking me to do was normal and not something out of planet cuckoo land. Both therapists did nutritional therapy part-time as an alternative career, but this meant that they weren't available when you really needed them - their 'lives' were far more important than you - they wanted to make a fast buck but without impacting their lifestyle. A medical professional wouldn't get away with this.
Luckily I was in the NHS at that point seeing a gastroenterologist who actually listened. They recommended some medication that would help me with my visceral pain (Linaclotide for IBS-C only) and I found Alflorex probiotic myself, which has been scientifically studied for IBS (have you tried that one?). Both have got me into a much more stable position.
The problem with those tests is you end up down a rabbit hole trying to 'fix' things by taking loads of very expensive supplements (from which they also make money) none of which work. This is because the science is not there yet - if it was, there wouldn't be any IBS and there wouldn't be this forum and we wouldn't be having this discussion. Unfortunately the tests companies and therapists are making vast sums of money from very desperate people. I can say that since I was one of them.
Thank you for your reply. I, too have sadly fallen prey to a ‘nutritional expert’. I paid a vast amount of money for her advice which actually made me worse ‘I told her eating 10 vegetables a day and the £100 worth of supplements would wreck me but she insisted she knew my body better than I do’
I have tried so much over the last 25 years and am actually worse now than when I was first diagnosed. I appreciate I am probably grasping at straws with the stool test thing but I’m getting desperate now. I have tried various probiotics but sadly they all exacerbated my issues. I truly hate this condition and my NHS gastroenterologist has given up on me.
I'm so sorry to hear that. Did you specifically give Alflorex a try? I have had many probiotics over the years and that one worked best for me. It has the strain that is normally passed from mother to baby during a natural birth to prime the baby's gut defences and is very strong at fighting infections if your IBS is caused by a gut bacterial imbalance which can often be the case.
I have tried Alflorex several times as I’ve read so many glowing reviews but sadly it made everything so much worse. I’ve tried many probiotics and probiotic foods but they make my gas, gurgling, bloating and IBS-d worse.
Have you had any tests for BAM (bile acid malabsorption)?
Also, I know that SIBO tests are inaccurate, although my gastro said that true SIBO cases are rare, they can happen. It is interesting that probiotics make it far worse, which is why I am thinking of it. Has this been discussed with your gastro? There is a distinct set of causes of SIBO and you won't have SIBO unless you have had one of the causes. I can post the full list for you I you think this might help.
My gastroenterologist said very much the same to me although he has said he will still send me the Healthpath SIBO test to do at home as it is now available via our NHS hospital. I am on the waiting list for the SeHCAT scan, although so far it’s been over a year as there is a nation wide shortage of some of the radioactive substance they use for the test. I don’t have many of the symptoms of BAM, my issue is mainly very excessive gaurgling and growling in my upper and lower system (which even wakes me at night), gas, bloating, pain, nausea, acid and discomfort in my lower digestive system.
I would very much appreciate it if you could post the list, thank you.
It is good that they are considering it via the NHS. Shame about the wait for the scan, but on a positive note it does look like they are looking at the right areas.
Regarding the list I was presented with this handout which shows the root causes of SIBO:
On the right hand side you will see the box containing the heading "Aetiology" which actually means 'a set of causes'. I went through this list with my gastroenterologist and I have added comments from my own health perspective.
He said that these areas would be covered by the Small Bowel MRI scan that I had:
• Stasis: dysmotility – not apparent
• Surgery (loops, vagotomy, bariatric) – not apparent
• Short Bowel Syndrome - not apparent
• I also added ileocecal valve (which sits between the small and large intestine) to this list, which my therapist kept going on about. She said that my ileocecal valve was stuck open allowing bacteria from my large intestine to wash back into my small bowel and I'd need to visit an osteopath who practices visceral (organ) manipulation to get them to close it for me (or you can do it yourself via a youtube video). I had to go to another city 1.5 hours away to visit such an osteopath who eventually said he didn't manipulate the ileocecal valve (although a phone call indicated he might), but I had a couple of sessions of him manipulating my intestines because they were stiff. My small bowel MRI showed there was nothing at all wrong with my ileocecal valve - it was closed and showed no inflammation or any abnormality that would cause SIBO.
And now for the rest:
• Achlorhydria – no stomach acid – he said this was highly unlikely and also considering I can experience acid reflux - I also would have thought a fecal elastase test would show if you aren't breaking down proteins correctly (which require stomach acid for digestion) and mine came back OK.
• Hypochlohydria – low stomach acid – same answer as above – the only real test is a PH test directly into your stomach, but he said they didn't do this any more and home testing is inaccurate
• PPIs – my therapist said that I hadn't been on PPIs long enough to make a difference
• Malnutrition – no
• Collagen vascular disease – immune system inflammation e.g. arthritis – not in my case
• Immune deficiency - unlikely
• Advancing Age – no
• Chronic Pancreatitis – this causes constant abdominal pain/fatty stools - no - it is interesting that another IBS Network member had responded to Rifaxamin but was also diagnosed with a compromised pancreas.
• Chronic ABX use – no
• IgA Deficiency – my tests show this is normal range
• Coeliac Disease – I had blood tests with the GP and these came back fine
• Crohn’s Disease – I had blood tests with the GP and these came back fine
and colonoscopy was OK
• NASH – non alcoholic fatty liver disease –looked at my records for this and this is normal
• Cirrhosis - no
• Fibromyalgia – widespread pain - no
• Rosacea – no
I don't know whether this list helps at all, but might be worth working through from your perspective. If you do have SIBO and the root cause isn't tackled, it will only keep coming back. You could additionally request a small bowel MRI scan, which my gastro recommended, to investigate the anatomy of the small bowel and whether everything looks normal. Good luck.
As I mentioned having had these stool tests the probiotics affected me the same way caused gurling, wind etc. Nutrionist did try an alterative again these did not agree with me.If you go ahead & have the stool test done privately you will need a Professional to decipher the lab results for you & think all they offer is alternatives e.g herbal remedies will be pro or prebiotics or for parasites herbal antibiotics. Just a thought as you have tried all these in the past will this not be a waste of time & money.
hello Rustydog, I had very similar symptoms to you, excessive gurgling, wind and pain in upper abdomen and just about everything I ate disagreed with me causing pain which kept me awake in the early hours. Also constipation. I went to a Naturopath he recommended a SIBO test which I did at home and returned to a clinic the results in my breath test were hydrogen high. I followed a very strict diet similar to Fodmap for 6 weeks and took herbal antibiotics and digestive enzymes recommended by my Naturopath. It was tough but made a remarkable difference to me within weeks. I introduced foods back into my diet very slowly. I cannot tolerate soluble fibre very well only in very tiny amounts. I tried porridge again, which I love and ate every day, it made me really poorly again so that’s off the menu. It has been a year now and I’m finally beginning to feel normal but I still have to watch what I eat and listen to my gut you get to be able to read it. I do hope this helps, we are all so different, affected in different ways it’s so hard to get to the bottom of it all. Hope you find an answer soon.
Thank you, your story gives me hope. I will chase up the hospital and see if I can get the SIBO test asap. I will probably need to find a very good naturopath as I know the gastroenterologist will just prescribe me Rifaximin and leave me to it. So good to hear you are feeling better, that must feel amazing.
Best to look at reviews on Naturopath that's all I had to go on and I struck lucky. Only had to pay for one consultation and one follow up he was very helpful answering my queries online so cost me less than £100 The SIBO test was the most expensive thing I think about £130 ish but all was worth every penny I felt so ill. I did also suffer with dreadful nausea which was very debilitating. I really wish you well and there will be an answer just have to find it, took me a long time.
I wouldn't " invest" in any sort of Stool sample test until after you have your SIBO and other tests . There is no point in spending money unless you know it's going to be necessary.Check with the list if drugs and supplements you take to prepare for your SIBO test , you can look this up by checking what's required with a Google search . Certain drugs will make the test inaccurate.
If you do need a comprehensive stool sample you may be able to get in on the NHS after the tests you've had booked have been done if they don't give you any answers if you ask about it.
You could ask the specialist about the possibility of Fungal Overgrowth, not just bacterial issues.
I have FO in acute bouts , often after courses if certain medications.
If you want a comprehensive stool sample done you may be able to get it via the NHS private / paid test service which is available now . This , at least, may give you more piece of mind about how reliable the labs are whom are examining your stool cultures. The GP is also more likely to react appropriately to the results that return from an NHS used and approved lab . Many of them try to dismiss the results that come back from private company tests or decide that it needs doing again by them anyway.
Plus , the NHS test service may cost less than the advertising companies , so it's worth checking first.
Have you been to a Nutritionist just to request food and drug intolerance tests yet ( unless you have a friendly GP whom will just refer you for these tests via the surgery )?
Thank you. I was unaware there was a private test service available via the NHS, that’s good to know, I’ll look into that. Sadly, my gastroenterologist has confirmed that a comprehensive stool test won’t be available via the NHS at our trust.
I’m just desperate to get to the ‘bottom’ of everything. 25 years of this has worn me down tbh. Since Covid, as with everything else on the NHS the waiting times are horrendous. I have to wait 9-12 months for gastro follow ups, the SeHCAT test could be another 10 months wait on-top of the 12 months I’ve already waited and the SIBO test seems to be taking an age to arrive. I am rather nervous about seeking out a nutritionist due to the issue I had with one last year, she was a complete charlatan tbh. Sadly my gp just wants me on antidepressants as she says all of my issues are anxiety related!
Can you get to an NHS Nutritionist in your area?All nutritionists are hit and miss from my experience, much like Physiotherapists, if they don't really have good understanding of the condition , or how multiple conditions you might have effect each other and your body they can do more harm than good.
But it may be worth being referred to just to see if you can manage to get the tests that would be useful done by them free on the NHS rather than spending out lots of money are tests that are , on the whole , unlikely to show significant results .
I have a gp appointment next week so will ask her. I did see a NHS dietician many years ago but have never been offered anything similar in recent years.
Oh , meant to say , the amount of times they used or dismissed my conditions as Anxiety related over the years I couldn't count on just my fingers and toes.I don't take Anxiety lightly , but I also know none of my conditions are related to Mental Health issues . The only Stress I get is biting my tongue in health appointments.
I got into the habit of saying to the Anxiety card, " I am not ill because I have Anxiety , but I am sometimes anxious because I am unwell and haven't been diagnosed or treated for it yet."
That is how I feel. On a previous appointment with GP he referred me to the practice Mental Health Nurse and I spoke with her and she said exactly what you have stated that I get anxious because I am unwell and not been diagnosed or treated 🤬Take care
I've just signed up to the Zoe Health Project which is being run by Prof Tim Spector of King's College, London. It includes an optional stool test (full microbiome), plus others (such as blood sugar) for around £300 on top of the monthly payment, so it's costing me a minimum of £450. However, I tend to trust this as it is part of a wider research project on gut health, rather than something which is being done purely for financial gain. It's too early to judge whether this will be of any benefit (though trials have suggested around 75% success rate) as test kits aren't being sent out till May but, if you want to find out more about it, go to joinzoe.com.
Have you had the test kit sent to you get? I’ve been following the Zoe project and Tim Spector for ages and signed up about 4 months ago but haven’t heard anything yet. Although I didn’t realise it was so expensive!
I thought of doing a comprehensive stool test with Genova diagnostics, but for some reason, my instincts just said no don't bother.
That applied to me anyway, and I wouldn't want to put anyone off who wanted to do it.
In the absence of any signs that suggested infection or SIBO, BAM, etc, or even (excuse the tmi) ...bad smells or colour, etc, I thought whatever is going on is not showing those kinds of red flags. Just a sensitive tummy with loose-ish stools sometimes.
But I kept thinking...suppose they find I am short of xyz good bacteria? Where the heck am I going to find a probiotic with ONLY xyz in it? I wouldn't really want to throw any probiotic at my gut in a way that's like throwing darts at a dartboard while blindfolded. I'd want to take only the ones that were needed. Another instinct I get is that a probiotic would make me worse. Unless it was specially targeted.
Again, that's just me. It probably wouldn't apply to everyone.
I can be very weird and hypersensitive.
But what has helped me a lot is homeopathy. It costs me £65 a month with a local practitioner. I am honestly nothing like I was when I first started. I thought I might be dying at that stage, I felt so bad, and was terrified of waking up in the morning. It was truly horrible.
Now, I get glitches, still have the odd flare up, still can't eat some foods without some consequences next day, but my whole life feels so much more positive and my gut is easier generally. I often feel like my old self again and go for long walks and enjoy my dinner.
Thank you. I did have my doubts about the stool testing but have been watching a tv show about gut issues and they tested each person with a comprehensive stool test and said the results could tell them so much, it intrigued me tbh but the tests are so expensive, if they were cheaper I’d have jumped at it. I suppose as nothing has helped me long term and I’m getting daily symptoms I was hoping a stool test may pick up something which hasn’t been considered via the NHS? I’m probably grasping at straws right now!
It is very possible the comprehensive stool test will pick up something that the NHS doesn't bother with. The NHS does ignore many things. It would be good though if you had someone who could help you interpret any findings, and suggest the correct treatment/diet, whatever. Unfortunately, there goes another bill !
But when I started the Fodmap diet, I couldn't afford a dietician, and wasn't offered one on NHS (lockdown situation at the time). So I just started researching and learning, and working jolly hard on it like I was doing a course to be a nutritionist. That is a good option which is free but takes a lot of time and energy.
Sometimes a bad gut can be caused by imbalance in serotonin and the brain-gut connection, rather than any dietary thing. I don't know if the stool test has a way of picking that up? I haven't done enough study to learn yet how serotonin imbalance affects the microbiome, if it does. (it probably does.)
Yes I’ve done 2 stool tests , one from Healthpath & one from Nordvic labs .
I did 2 because the first one I did was with one nutritionist, who wasn’t very helpful & the second one I did was with my now nutritionist, she’s preferred for me to use one she was familiar with so she could put me on the right path with supplements, which she has now done & we’re still working on it .
I would suggest you find the right nutritionist first before you do a test , so you don’t have the expense of two tests like I did !
Yes the nutritionist interpreted the test results as they didn’t make much sense to me , it showed I have dysbiosis , so Christina gave me a very detailed report & plan of action & supplements to take . It was worth doing .
That’s encouraging, Thank you. I’ve had a good look locally and sadly there are very few nutritionists in my area who also offer tests, most just offer diet advice. I will have to look further on the BANT site.
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