Microbiome testing scientific update

[xjrs]

Here is an interesting article on the science communities' view of current commercial microbiome tests:

gutmicrobiotaforhealth.com/...

[Liz1234ty]

Hi xjrs and thanks for sharing. In some ways it is good to know that there are specialists out there untangling this, but in other ways it is depressing that so little progress is being made! My own experience of paying for a stool test that is more comprehensive than offered by the NHS is that it was a waste of money, but then I guess they must help some people and its the trial and error approach that I so dislike as we IBS sufferers are forced to find our own treatments

[xjrs in reply to Liz1234ty]

I agree. Everything is incredibly slow. I find that most research states a finding, but that finding doesn't result in a conclusion that translates into any treatments and usually states 'further research is needed'. I just hope that the term 'further research is needed' doesn't continue to go on for decades and decades like it has done already. Very frustrating.

I had stool tests done at great expense and it was a waste of money. All it told me is that I had a dominant bad bug, but where do you go from there? I took antiobiotics, which made my microbiome worse and bad bugs only grow back. I could have helped myself far more cheaply by just trying out a good scientifically tested probiotic to kick it in to touch.

You are right, it shouldn't be that way with us having to run around trying out this and that ourselves.

[Liz1234ty in reply to xjrs]

I think it must be obligatory to end a medical article with the dreaded works - 'this is a limited small scale study and further research is needed'. I have tried a couple of probiotics so far and they only made me worse but I am currently trying some fermented foods to see if that helps. I do get quite fed up of waiting weeks for some product I am trying (based on educated guesswork as I have been discharged from medical care with a 'learn to live with it' sign off) to make things worse, with the hope that maybe one day it will make things better. Sigh!

[xjrs in reply to Liz1234ty]

I know what you mean. The probiotic that helped me the most has been Alflorex. Other people get benefit from Symprove. It's like running our own small studies on an individual basis!

[Liz1234ty in reply to xjrs]

I think it was a recommendation from you and few others on this forum - in particular the IBS Network - that Alflorex was one of the probiotics that I have tried (the other being VSL). VSL caused pretty bad side effects whereas the Aflorex only made me a bit worse. I preserved with both for about 8 weeks since both had clinical trials in support of them. I appreciate that some people do say to give it longer but that is hard to do when feeling lousy and needing to work etc. I am actually thinking about giving Symprove a try as I like that it comes as a drink so it is easier to take small doses if the side effects become too much.

[xjrs in reply to Liz1234ty]

That's a shame. Hope you find something that helps.

[b1b1b1 in reply to Liz1234ty]

My gastro now recommended trying probiotics for one month only. If there is no definite help after that to stop. I am in the US, and that seems to be the current guidance here.

[Liz1234ty in reply to b1b1b1]

That's interesting. A lot of the people who sell these products claim that it can take longer to see results e.g. Symprove have a 3 month programme. The problem is since they are making vast amounts of money (I presume) from selling these products it can be really difficult to know whether this is good advice or self-interested advice.

[LFHell in reply to Liz1234ty]

VSL also gave me awful bloating but did give me better microbiome results, streptoccous thermophilus was the only probiotic strain that seemed to stick for me but it was also present in Alpro plain yhogurt i was taking with the probiotic! And i had it at 1% on that microbiome test, despite having gastritis and needing antibiotics 1 month prior! I could only tolerate it while on restricted diet for gastritis tho. I took Alflorex in the morning and VSL#3 in the evening and found them very soothing for the gastritis pain... VSL3 are now using untested strains tho, check google, my dietician told me. Vivomixx is the probiotic all the research was done on but VSL#3 kept the name.... So its vivomixx people should take if they want VSL3 now! I've bought Vivomixx drops now so i can take a much smaller dose. Only tried once so far and think it still made me bloated but i'm having issues with C at moment so may not have been that.

[b1b1b1 in reply to xjrs]

The lack of progress with IBS is indeed very frustrating. I think that it does not get as high a priority in funding and research because it is not a fatal condition. Also, there is still some stigma about it and ideas that it may be related to emotional issues. Fery unfortunate.

[Inksplat]

I’m trying the Zoe health study - includes a gut health microbiome test and identifies the most beneficial bugs to have and the least. Also measures your blood sugar and blood fat response ( I think this can be linked to inflammation) then they propose various foods based on your individual scores. I just had my scores and they don’t look too good but that’s no surprise. I’m hoping by following their nutrition advice to improve my gut health. Also been written off by the docs as IBS = no further treatment.

[Waiting_for_godo]

I've found it very useful and the report explained everything which helped me narrow down the probiotics strain I need. I think its a very good test.

[LFHell]

It depends on the test. British Gut project was great and Atlas used to use same technology RNA testing (like DNA testing). I got good insight into my gut bacteria from them and their results correlated well with BG test results. They've gone bust now tho and im gutted as was finding it much more useful than doctors.

[xjrs in reply to LFHell]

Tests can show up gut bacterial imbalances, but what do you do with that information? Many people with IBS have these imbalances, which is why doctors recommend probiotics as the first port of call. With regards my own microbiome testing, I wish I'd tried a better studied probiotic first - it would have saved me lots of money, effort and going down the wrong rabbit hole. On taking the tests, nutritional therapists convinced me that I needed 'to get rid of' the dominating bad bug - this resulted in taking antibiotics and anti-microbials which was the worst thing for my microbiome and I am still suffering from this now by having severe IBS-C. I wish I'd known more and accepted that we all have bad bugs in our systems (even people without IBS) and it is whether or not the good bugs are keeping the bad bugs under control. This fact was the game changer for me. Instead I started working on improving the good bugs, which in the end helped greatly with the IBS pain and severe food intolerances that I was experiencing.

[LFHell in reply to xjrs]

I found it useful to know the specific bad bacteria i had overgrowth of. For instance i had some proteo bacteria and also bilophia wadsworthia which has been linked to IBD and colon cancer. This is a bile loving bacteria which loves saturated milk fat. And i did develop dairy allergy. I then took Dr Gut because of this knowledge which helped. You can make dietary changes based on what bacteria you have and take targetted probiotics if you do enough research on it. So i found it really really useful and think as usual the medical establishment want to deny us knowledge until they've researched it to death while we all suffer in the meantime. I can also see my bacteroides have shot up on the low fodmap diet and i'm extremely suspicious of whether this diet is making me worse. Tho dont want to put others off as i could have other things going on..

[xjrs in reply to LFHell]

Yes. Being very low FODMAP for too long can be counterproductive since it reduces feed for the microbiome, which can worsen IBS in the long run which is what happened to me. Elimination and reintroduction diets can be useful if you've got a few things that are causing big problems, but you can make up for missing foods with alternatives. I found that the more I eliminated, the more intolerant to foods I became as time went on, so it became a vicious circle. The only way out of it was to try to improve my tolerance to foods. For me this was Linaclotide (for IBS-C) and Alflorex probiotic - for others it might be something different.

[LFHell in reply to xjrs]

I agree, i've been suspicious thats its making me worse from the start, though i do get good symptom relief if i'm strict. I've also found out im allergic to dairy/or become allergic to dairy from the latest diet so in theory i should be able to tolerate some fodmaps again but they still make me feel sick in large doses so i think i need to build up with a tiny bit more each day? Tho giving stacking is supposed to make symptoms worse, im not sure. How did you manage it? Were you always IBS-C or did low fodmap diet make you it. I was doing ok til I took LGG probiotic recently, a brand from Poland and its given me C. So one extreme to the other yay Now taking movicol daily and dietitian told me i shouldn't have taken it after 1 day of constipation but i could tell something had gone wrong and it hasn't righted itself in 5 weeks so far.. I'm so sick of the lack of decent advise on guts! Im going to spend my easter using Chuckling Goat to analyse my microbiome results from before. I've not had investigations and they did find a few things but i dont think they are contributing to my symptoms, so i def think its bacterial and food related still. I have been quite busy at work this year though so maybe that hasn't helped.

[xjrs in reply to LFHell]

I start with 1/4 to 1/3 of a normal portion size, incrementing every couple of days (some people's turnaround time might be longer) or cutting back to a previous amount for longer if I get symptoms whilst keeping a food diary. Sometimes this helps your body to get used to the food, sometimes I find that I can only eat a certain amount of a food (which is better than not having it at all to get some variety), sometimes I still have to eliminate the food completely (i.e. whatever amount I eat gives me symptoms). You may find this with dairy - note difference between food intolerance and allergy explained here: bda.uk.com/resource/food-al....

When I was younger I was IBS-D. This is when I started low FODMAP, but went too far with this for too long. This helped the 'D', but over the years, this moved to visceral hypersensitivity - gut pain referred to my back overnight and triggered by more and more foods so I could hardly eat anything without getting pain and badly affecting my sleep - I assumed being low FODMAP for too long affected my microbiome, with bad bugs dominating over sensitising gut nerves). I wasn't particularly 'C' at this point. Due to the pain and doctors kept suggesting PPIs for reflux (I knew it wasn't reflux since the pain was mid-lower back whereas reflux is upper back between the shoulder blades), I employed nutritional therapists - these destroyed my microbiome saying I had SIBO when I didn't. It was after this microbiome destruction that I became chronically constipated with overflow diarrhoea so I couldn't leave the house. At that point, under the care of an NHS gastro, I was offered Linaclotide (for IBS-C) and at the same time the IBS Network had an offer on Alflorex which I had just read about, so it was very timely. Both have changed my life in terms of the pain, though I need to consume a huge amount of fibre for the 'C', though Alflorex has made me more tolerant to fibre. I still have food intolerances - particularly certain vegetables give me problems, but I try to get variety in different ways such as eating different fruits and some nuts etc.

If you want to know how I deal with 'C' dietary wise, I posted info in the link below to someone else on this forum:

healthunlocked.com/theibsne...

[LFHell in reply to xjrs]

So sorry you went through all that. I literally saw my dietician on Wed, and argued with her a bit about lamb as she said it wasn't causing high cholesterol when i literally did the blood tests after then later and lamb was increasing it each time and back to normal each time i stopped eating! She also told me to up fruit and veg to cure C and possibly add psyllium husk& linseed and take out eggs which is all fine. But i just added up my fibre as i know i eat a lot now and I get 30-34g a day which is plenty. So googled can you have too much fibre and found this: drselhub.com/4-signs-youre-...

And now quite annoyed because the only time anyone has ever mentioned soluble fibre to me was my colleague who had a gf who has colitis. Why are the dieticians and doctors not tellin us about this?

"Excess fiber can cause constipation or diarrhea. Remember to think of fiber as bulk that attracts water in the GI tract. If you don’t have enough fluid in your system or you haven’t taken in adequate fluids, dehydration of the GI tract can occur, leading to hardening and difficulty passing the stools. This is especially common when the fiber is primarily soluble fiber like that found in oatmeal, beans, apples, strawberries, or blueberries.

Opposing symptoms, like diarrhea and loose stools, can occur when this bulk is made up of the insoluble fiber found in wheat, corn bran, leafy vegetables, broccoli, and tomatoes. Although adding insoluble fiber to your diet can be a good treatment for constipation, too much consumption of this type of fiber can lead to diarrhea and loose stools—especially if you up your intake all of a sudden, which will push the contents of your GI tract through more quickly."

Literally i've been wondering for years why I eat way better than most people in supermarket but have so many gut issues. Def going to complaint to doctor about this.

One website says you need 1 litre of water for every 10g of fibre consumed but i'd have to drink 3 litres a day so that can't be right

Thankyou for the link. I think dairy is the Non-IgE mediated food allergy. My dietician said its an allergy because its to protein but it can be delayed by 1 or 2 days. I read a medical paper that said its still an immune system reaction. So i dont think I should be eating it all but because i get reflux when i get blocked up I had to continue eating 10g.

Managed to cure the C tonight anyway by having a slice of beef, slice of cheese and movicol, have been to loo 3x! My friend said your bowels are like the British weather

[LFHell in reply to xjrs]

ps Ive taken alflorex and it helped when i had gastritis but dont notice much difference from probiotics at other times, other than bloating. Streptococcus thermophilus seems to be the only one that took to my gut (at 1% of my sample!) tho worry thats too high and it infected me

[LFHell in reply to xjrs]

ps sorry about the nutritional therapist convincing you of that and making you worse!

[LFHell in reply to LFHell]

My friend has IBS and has just done the Zoe test and they said everything was great (he's vegan tho! I told him it would be better to go vegan than do low fodmap diet and he seems to be doing great on it, he can even eat beans now which he couldn't before). Whereas my test results have just got worse and worse. Tho i know that the samples dont show everything in your gut anyway, its just one snapshot but the trend seems to be clear

[LFHell]

I found it useful to know the specific bad bacteria i had overgrowth of. For instance i had overgrowth of some proteo bacteria and also bilophia wadsworthia which has been linked to IBD and colon cancer. This is a bile loving bacteria which loves saturated milk fat. And i did develop dairy allergy. So i found it really really useful and think as usual the medical establishment want to deny us knowledge until they've researched it to death while we all suffer in the meantime. I can also see my bacteroides have shot up on the low fodmap diet and i'm extremely suspicious of whether this diet is making me worse. Tho dont want to put others off as i could have other things going on..