Exploring the Gut Microbiome
I accidentally started side-tracking another thread on this so thought I better just start a new thread if anyone is interested
I was recently looking at the gut dysbiosis idea (e.g. https://me-pedia.org/wiki/Dysbiosis) and came across a study in 2012 called "The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy". The study concludes "Bacteriotherapy achieves initial success rate of 70% in CFS and a 58% sustained response. Given that manipulation of the colonic microbiota improved CFS symptoms, bacteriotherapy for CFS warrants further investigation and may provide further insight into a possible etiology of CFS." I thought that was interested and might be worth exploring.
Apart from trying probiotics I really haven't explored treating the gut issue much. Has anyone else had any helpful experiences? Anyone seen a gastroenterologist or similar?
Hi@Katt Today must be all about the gut . Perhaps we all have our appetites back and just want to chow down on whatever we like without any complications. I have issues with my stomach, yet have managed to control the nausea, and digestive pain simply by understanding the whole process of digestion. One of the most important aspects of gut health is the food itself. Once I learnt what foods actually are ( what they are made of and how are bodies break it down and convert to energy, then I felt confident in knowing that certain foods would be easier to digest than others. The trick is to know what to eat across the food spectrum, factor in allergies and intolerances and come up with the wonder diet (diet for better health) that suits your body. I eliminated a lot of foods that always made me ill (yet yummy to eat). I now know what to stay away from and what to eat more of. This took a year or so to get some consistency in diet and discipline and wasn't my brainstorm at all. It was the well researched and educated dieticians that helped me. I am amazed at the technologies available today that can gather data on your body health and actually provide solid based information. Years ago it was a broader general approach: today the science doesn't lie. I'm glad you are open to exploring information about gut health. The more knowledge one has the better: especially when dealing with ME/CFS ( plus all the other ghastly sidekicks that persist in ruining a good meal). Thumbs up to Doctor Thomas Brody and his work. Perhaps you could reach out to the Centre for Digestive Diseases and see if any follow up studies were done since 2012.
I began to treat my gut health by seeing my GP first and having a blood test for liver, kidney function etc. and general overall health. I sought the services of a dieticians/nutritionists armed with info and knowing my body was functioning well (within the constraints of ME/CFS) and began with a very long chat with the foodies … best thing I ever did. I still have ongoing gut health issues that appear in bouts every now and then due to PEM and me being a crashdummy. The difference now is, I am more aware of what my body is doing, compared to years of ongoing pain and suffering, major weight loss and other nasty symptoms. I feel like I have won a small battle and gained back some right to the way I feel.
Hi @crashdummy Great points about finding the right foods that suit each persons digestion. It is absolutely all related! I certainly have to be careful what I eat too and I have heard a lot of people getting a lot of help from dieticians and nutritionists (they are also on my list to see) so definitely a good thing to bring up
So happy to hear that this path has helped you so much too! Always so great to hear
Looch last edited by
@Katt I have had IBS with my CFS for over 4 years, discomfort/pain most days. I work with my dietician who is amazing, she is a bit of everything! ( psychologist/motivator), has helped me more than anyone. I have followed a low FODMAP diet, which helps with “load”, but we have been trying a low histamine diet for the last few months . I think I have had some improvement but it is very strict so not sustainable long term. I am also taking sodium cromolyn which is linked with mast cells and histamine. I have been referred to Professor Pete Smith who is here on the Gold Coast (Immunologist/Allergist), currently waiting for an appointment. He apparently does a lot of work relating to IBS but I am cautious, in the end it feels to me it is all fatigue related.
@Looch thanks so much for the info! I have heard of some people having some success with the low FODMAP diet. I hadn't heard of the histamine diet before though. It does sound promising for you if you've seen some improvement, hopefully they can narrow it down to a more sustainable diet for you. I might do some further investigating too. Was there a test that lead the dietician down the histamine path or was it just something else to try to narrow down food intolerance with the IBS?
Fingers crossed that the Immunologist has more insight for you! I do understand the caution though but never hurts to keep exploring
Looch last edited by
@Katt Just another thing to explore, she felt some of my symptoms were similar to high histamine levels. I’ll let you know how I go. I didn’t find it easy to find current information online, happy to share what I have if you are interested.
@Looch always keen to hear what others have found
Over the decades I have tried everything and a plethora of medical tests, some to which I have major episodes and once ended up in another ward, from gastroenterologist to neurologist and under the care of now retired Professor Ray Garrick in the 1990s. My gut continues to decline in function. I have also toured the Centre of Digestive Diseases in Five Dock under Prof Borody and immunologist Prof Clancy. Nothing definitive has been found, a bit of this and that. I refused the RPAH and the elimination diet as back then, the 1990s I had two friends go down that road and come out allergic to everything. I am convinced my gut issue began the day I was born and with the dx of hEDS and MCAD and the ageing process, it is a matter of daily management. Two doctors have suggested a poo transplant which could help some things such as a better microbiome but it does not help valves, arteries, sphincters and ducts that malfunction due to hEDS. A ton of money wasted and more suffering endured than I should have in hindsight. A sick gut is IMHO a driver of ME/CFS.
river last edited by
It's a high nausea day for me today so I'm living off sustagen. I can only manage about 60ml at a time but it's better than nothing. I recently got the chocolate flavored version and it's a lot nicer than the vanilla.
My dietician recommended Fortisip to get more protein in my diet. It's very rich and I can't drink it when I feel this nauseous but it is a good snack on better days. Again I can't consume much at a time - I usually only drink 50-75% of the tiny little bottle.
Does anyone else find these kind of meal replacement drinks useful? What's your favorite?
@river Sorry to hear you are having a bad time with nausea. Hope it eases off soon for you. I haven't tried sustagen or any other product like that before. If I did, I would probably go for chocolate. At least you ae getting some nourishment whilst waiting for your stomach to settle down, even if it is only small quantities.
Hi @River, on the days that I struggle to eat because of nausea and extreme fatigue I drink a plant protein from Botanika Blends. It's organic, dairy, gluten and refined sugar free, and has no artificial flavours or colours. It contains prebiotics, probiotics and digestive enzymes. They have a huge range of flavours and on the occasion Aldi sell it at a very reduced price. So far, I've had no stomach problems from drinking it. I can highly recommend the Mint Cacoa, Golden Chai Latte and Oh My Apple Pie flavours. Take care of yourself.
I'd like to share my experiences with Fasting and Gut function, discussion of which seems surprisingly negligible from a simple search given that GI impairment is a near universal symptom of ME/CFS
For some historical background, I was raised Seventh Day Adventist and thereby have been a healthy eating vegetarian most of my life so impaired gut function was always a mystery.
It was in my late 30's that CFS symptoms started to set in which included a stark decline in gut function. In particular, I could no longer digest sucrose, white flour or other simple di/polysacarides. It took 10 years for that realisation to click that it wasn't just bad gut flora but impaired absorption.
Di/polysacarides require enzymatic breakdown into glucose and fructose before they can be absorbed through the intestinal wall. Those enzymes are on the surface of the cells lining the intestines. If those cells are damaged or impaired the sugars don't get digested. Undigested sugar simply gets fermented in the gut promoting Small Intestine Bacterial Overgrowth (SIBO) and Inflamatory Bowel, Leaky Gut and all it's knock-on effect.
Taking sugar was not just bad for my gut but would trigger violent and severe CFS crashes within 3 or 4 days together with serious mental health disorders which I simply had to suffer through until my gut cleared out again.
For this reason my only sweetener and significant caloric intake is honey, which is glucose and fructose and easily absorbed. This has made the gut more manageable but for a long time the question was how to heal the gut lining itself.
The second realisation of note is that the gut, being a long tube of very strong muscle, nerves and specialist tissues, is also subject to serious fatigue crashes and that it also needs absolute rest in order to recover. So it is by this reckoning that for the past few years I practice Intermittant Fasting - no breakfast, late lunch and early dinner with occasional prolonged multi-day fasts of 2 or more days.
It's effectiveness is such that, given a week's notice, I can pull myself out of a serious prolonged crash in order to be functional enough to attend some important appointment. The lead in is a day or two of more vigilant rest followed by a two day fast to empty my gut and let it rest. Sometimes I'll dry fast for 24 or more hours. It takes about 4 days to evacuate properly. This shifts the body into a ketogenic and autophagic state in which it's burning fat, damaged cellular material and foreign biota (particularly when dry fasting). It a very effective way of 'clearing out the old' and promoting full body healing.
By the end of the week, my body is fully rested, detoxed and generally functioning at 80-90% and I can go about the day's necessities with physical and cognitive confidence. If that involves significant excursion, I'll typically crash again on day 3 following leading to cyclic crashes if I have weekly appointments any distance away.
In early experimenting, my longest fast was 10 days which included 3 day dry fast. I believe this was very effective at crack out a lot of 'old junk' though I did suffer a lot more fatigue and dizziness throughout which I attribute much to poor metabolic function of CFS itself and lesser to low blood sugar. It was a very interesting experiment to go through and gave me a far greater awareness and experience of the various modes of metabolism and differing physical and cognitive qualities arising from those modes.
Having this practice and experience, together with breath-work and 'fostering' the release of disautonomic energy, I'm happy to say that my gut function has mostly restored to health. I can take sugar again in small quantities without to triggering a crash...but not too much.
Over the years I've used on vary rare occasion, a 'chocolate bar' test (Bounty or Chokito ) if I feel there's been any improvement. After learning some trauma release techniques before Easter this year which I felt healed gut function somewhat, I ate a Bounty and had no adverse effects. I enthusiastically reported this to my mum and we had a Cadbury Creme Egg each..... which completely crashed me days latter. Oh well. But I've gained ground!
Gut neurology (the Enteric Nervous System ENS) and endocrinology is one of the systems suffering a sinful neglect of enlightened research (called Gastopsychology). Given that it has half as many neurons as our brain and that it's neuro-topolgy is similar to that of a mollusc, I don't just think of it as a gut-brain but our Mollusc Brain in the similar sense as our Reptilian Brain (as they say). It's much less integrated, in the same sense an octopus' brain is distributed out into its arms, but has its own intelligence and communication channels with out brain and ANS. I tend to regard it as something of a creature in its own right. It's the primary source of our emotional dynamic, good, bad and disordered according to its health and function. Thinking in this way has greatly affirmed my relationship with gut health itself. It's like my own internal pet that loves me and needs proper care and attention. And if it's happy, so am I.
From the Moderators: While we're always glad to hear of people experiencing improvement, please take care when investigating fasting. While some people with ME/CFS have reported benefits from fasting, others have reported that it didn't help and triggered difficulties of its own. We recommend exercising caution when investigating fasting, and only undertaking it in consultation with appropriate medical support (eg, a GP or dietician).
Hey all, how are you going on your gut journeys?
I am looking into this atm.
Many years ago i hd th e'hunch' to eat organic, was often mocked for it, and over time it became too expensive anyway.
Well, this gut microbiome thing is now doing the rounds, and I just learned today that glyphosate (the main ingredient ie poison in roundup the most common pesticide used in conventional produce) can totally disrupt our gut microbiome on so many levels and have far reaching effects, i haven't verified this, but in my research today i learned its follow on effect can negatively impact ones use of amino acids, ability to form neurotransmitters, as well as cause immune issues. My jaw dropped to say the least.
here is one of the sources https://www.youtube.com/watch?time_continue=167&v=TYTsQbahME0&feature=emb_title
again i haven't personally verified the but it does seem to be a repeated sentiment.
I am working towards using more organic produce in my kitchen but holy moly it is PRICEY.
yesterday i spent $10 for a small bag of salad leaves and 4 tomatoes. probably double what i would spend for conventional.
Cucumbers were $8 each! crazy.
Hi @coco .... yes there is a lot of buzz talk about the gut microbiome ... it is more prevalent these days than years gone by.... some of the information is very informative as it explains the digestive system and the good gut bacteria we all need, in a very scientific way ... I suppose the message has been around for generations; the language has changed though. I can remember being told not eat too many stone fruits, you will get a gut ache and the runs !!! .... Eat your greens or you can't leave the table!!! ..... Oh and that dreadful cod liver oil ....all the words of wisdom still ring in my head ... and yes I still dish up 3 veg and meat/fish/chicken etc ... but I prepare the foods differently now after having cellular well being consults with my nutritionist. I have learnt to identify the foods that just don't agree with me even if they are good foods and recommended for a healthy diet. I have added some new foods I didn't even know existed and so far after 4 months, I have discovered a better state of gut health. I know this as when I tried to reintroduce some foods, my stomach was in pain. Clean foods another buzz description for foods that haven't been processed was strictly adhered to in the first few weeks to get a gut balance, and blood sugars under control. The whole process is to target the cells and get them in a better state. I'm not usually into strict food eating but I tried it and now I am getting use to it. I do struggle with new recipes, especially ones 'I like. I said to my nutritionist "You are what you eat" and he replied not exactly... "You are what you absorb" .... I'm beginning to understand this. I was desperate to get my whole digestive system into some kind of friendlier state, hoping it may help with the illness. It has helped me with ME/CFS symptoms and at least allowed me to sleep better without digestive issues and stomach pain. I have to laugh at the cultural shift towards certain foods ... one can't help thinking it is to prop up emerging growers and food production in Australia. Almond milk is an example as well as blueberries, sweet potato, spinach leaves ... they are the greatest promoted foods at the moment and dominate the supermarkets. I have seen the changes over time and I'm still wondering where the squash has gone... we called it marrow but be darned if I can find it anywhere. As far as organic foods ... well they can be expensive unless you catch the supermarket grocer marking them down .... I've been lucky enough to live regional and our community garden is thriving with the best leafy greens ( all free for the picking) There are often wire baskets on front fences laden with fresh produce, grown on the property/or house block. Check out your community garden if you have one or one of those farmers markets ( when open ...they may be closed due to covid . I think I have practically written an essay here ... sorry everyone, I can get carried away in the moment ... totally understand if you don't make it past the first few lines ... or if it's all too much to digest ...heehee
@coco I am mystified by your statement that glyphosate is used on conventional vegetables as it is a herbicide and would kill the vegetable
@iris I realise now some glyphosate could drift across from weeds onto the vegetable
@iris organic produce is usually certified. With uncertified produce you don't really know what you are getting as the soil it is grown in could be contaminated
I saw a program that showed a lot of salad greens being grown in shipping containers in warehouses these days ...probably hydroponics ...
@iris good point ...