I am trying to find a way forward with a cure for SIBO but everywhere I read says that it just comes back after treatment. Trying to figure out whether its worth the cost and risk of changing IBS symptoms to something worse or not. Plus any comments on what methods where used to cure would be helpful. Thanks!
Any SIBO survivors out there?: I am trying to... - IBS Network
Any SIBO survivors out there?
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SB1000
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Have you been diagnosed with SIBO?
Yes. I took the test a few months ago via a private nutritionist. She cant prescribe antibiotics so I am trying to get info on how others might have been cured.
So are you in the UK?
Yes i am
Will your GP not give you antibiotic or don't they believe SIBO exists? I hope you don't mind me asking but I have had IBS for nearly 35 years and am always looking for answers and have often wondered about SIBO and going down the route you seem to be taking.
No unfortunately the GP hasn't even heard of SIBO and my first session with the consultant at the hospital was very dismissive. I asked the nutritionist to be tested for SIBO and it came back positive. I have always wanted to find a cure for my IBS rather than try and manage it. Not sure if I am being unrealistic with my hopes hence the post.
Totally understand, when I first started my IBS journey it wasn't even called IBS. Now there are all sorts of things raising their heads, but unfortuately we don't know if they exist or not. We all could be being conned into paying money for things that don't exist. I don't know what to think myself. You like to think people aren't taking you for a ride but then the older I get the more disillusioned I get with people.
Maureen I am on my early 70's and very healthy and active. I developed IBS-C 3 years ago and it is a trial and error process because there is no clear " cure" nor is ther no clear diagnosis just a catch all term. good luck and do not give up!
Feeling your pain. My GP hadn’t heard if SIBO either and just dismissed it when I mentioned it. I’m thinking of writing direct to my consultant who did my colonoscopy which came back clear to see if he will do a SIBO test. I have heard people have had medication after which has helped for a while but then it came back. I’m on FODMAP diet which is helping but still living with ibs
My UK GP prescribed rifaxamin so it is available on nhs. But gastro needs to tell GP to prescribe it.
Yes, just recently was tested for SIBO with a breath test over several hours after a food prep and now I am awaiting Xyfaxin, an antibiotic that can run severa thousand dollars however there are patient appeal companies that can get the fee weived. I am awaiting this
Could you please let me know how you get on with it. I would be very interested. As you probably have noticed a lot of people come on here and post things and then you don't hear any more, so you don't know if they work or not. Many thanks. Maureen.
Hi Maureen,
i shold be getting the med this week and begin a 2 week trial. I will let you know.
Thank you yogaman.🙂
Hello, this is my general response to help people find a baseline with SIBO. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do. Most people find they are all clear, and that IBS is a condition brought on by our modern diet, freely accessible food, sedentary lifestyles and usually a trigger of a previous infection. After 27 years of suffering with IBS I have found that the long-term solution that actually works is all about vitamins, periodic fasting and knocking out a few toxins that are freely dished out by the food industry. You are effectively the manager of a “food nutrient extraction factory”, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory, and learning how to get the best performance out of the factory.
This is based on some excellent publications, and also by observing how healthy people live. But, if you are all clear from the doctor’s, then the first thing to sort out is your vitamins and the timing of your eating and fasting periods. An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are practically impossible to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. Your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption, so it is a vicious circle that you have to break. If your farts really stink like something died, then this is because partially undigested proteins are making it through to your large intestine and the amino acids lysine and arginine being metabolized by bacteria into cadaverine and putrescine which are the compounds that give the smell to rotting flesh! – you yourself are not rotting, and this is just temporary, but it shows that you really need to sort your digestion out.
So, get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Get a blood test for Vitamin D and get you doctor to judge your supplement level required in IU’s to get you well healthy for Vitamin D. Do not get vitamins with high calcium and magnesium content initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and you should get enough of these minerals from your diet. Magnesium particularly can give you diarrhoea. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods immediately. This is normally completely overlooked by GP’s, but is an absolutely essential element for resolving IBS. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do the cleaning. You need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, ideally drinking only water. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be permanently loaded with bacteria. This results in SIBO (Small Intestine Bacterial Overgrowth), which is apparently responsible for 85% of IBS cases, but is only one of the mechanisms involved. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. The modern scenario of have cupboards full of rich foods permanently available day and night is a modern luxury outside of the original human design. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Furthermore, you should be able to avoid future bouts of gastritis as during the fasting periods, your stomach acid is more neutral at nearly pH 4. As a basic program, eat a good breakfast at say 7am (porridge with 50% almond milk or lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food at all for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day.
You will feel hunger in the fasting periods, but this is doing you good!, and you must NOT respond to it - only with water or black tea. This is CRITICAL. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. It takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped to prevent you from relapsing. In a couple of weeks, you should be able to be getting off the low FODMAP diet, and begin mixing back in the higher FODMAPs. Eventually, you can forget about low FODMAPs altogether, depending on how well your small intestine is performing.
The other aspect of IBS is that some food additives are quite simply toxic for you and cause direct inflammation of the colon, allergic reaction of the colon, or they are laxatives that give you diarrhoea that you didn’t realise you were eating. These are to be considered separate to the usual SIBO mechanism that you are dealing with above:
1.) Try to seek out and eliminate “trans-fats”. These cause direct inflammation of the colon, separately to bacterial overgrowth and you will be more sensitive than most because of SIBO and this confuses what is causing you trouble. Chips, hash browns, butter, doughnuts, popcorn and things cooked in cheap or old frying oil as you find in many restaurants and commercial products can give you colon pain directly through inflammation. It usually takes a couple of days to reduce this inflammation, but trans-fats are bad for you in a miriad of ways (cardio-vascular and diabetes), not only by inflammation of the colon. There is evidence that as cooking oil is re-used that the trans-fats increase. So, if you want fried food as a treat, best to do it at home with good oil at a low temperature, and use it only once. Ideally, starches should only be boiled, rather than fried.
2.) E407, or “Carrageenan” – is a high MW galactose food additive derived from a red seaweed, which is only present in small quantities as a thickener, but even at that level it has been shown to be “highly inflammatory to the digestive tract” and associated with IBS, colitis and other GI diseases. There is loads of literature and objections to this substance on the internet. It is present in cheap Crème Caramels, and many other dairy and meat products. After weeks of good health, just one of these products knocks me out with colon bloating and pain. I have found this by trial and error several times. Food tests show that even the food grade carrageenan contains between 2 and 25% of the non-approved “degraded” carrageenan, which is colon damaging and carcinogenic. Some food agencies now prohibit this additive altogether, and it may be responsible for a lot of IBS cases. It may be found in chocolate milk, cottage cheese, cream, crème caramel, ice cream, almond milk, diary alternatives, such as vegan cheeses or non-dairy desserts, coconut milk, creamers, hemp milk, rice milk, soy milk, and particularly processed meat. It is used extensively in cheap meats and is injected even into beef joints – so always get organic or local butcher fresh good quality meat!). It may be labelled as E407 or Carrageenan, but if you’ve got IBS, consider it as highly toxic for you. It may take a couple of days to get over a dose of this.
In the same category is carboxy methyl cellulose (CMC) which is more widely used in the food industry, but has similar toxicology in animal studies, giving inflammation of the colon. However, the jury is still out on CMC to its impact on humans.
3.) E338, E339, E340, E341, E450, E451 and E452, are phosphates or polyphosphates of different elements. Natural phosphates are essential for life, and your body is full of organically bound phosphates, however, free ionic phosphates have several problems. Firstly, they are laxatives and will give you diarrhoea (sodium phosphate was once used to prepare patients for colonoscopies!). Secondly, they are associated with cardiovascular disease and accelerated aging. Since the 1990’s we are now exposed to twice the amount of added phosphate in foods, and this is bad. There are calls to have added phosphate labelled on products as a health warning. Particular culprits are mass produced sausages and processed meats (another reason to go to your local shop butcher), some cheeses, and cola (both diet and normal).
4.) Aspartame and other sweeteners definitely have a negative role to play in IBS, and for some people this can entirely be the problem, if they are otherwise under control. As with the other toxins above, your ability to cope with them varies on a spectrum. If you look at some of the work of K.J. Mielke, many of these additives can be allergens or “pseudoallergens” and with time you can develop a reaction to them. There are many different possible causes of IBS, and one person’s solution may not be another’s because of the allergies that you may or may not have developed, plus all other factors in play. Personally, these don’t affect me (yet!), but I respect that that could change at any time, and I am vigilant for it.
Red meats generally take a long time to digest, and also contain some trans-fats, but are usually tolerable. Only have them once a day, and just a light salad to go with them, not a load of starchy food or grains, as they have long digestion times. Ideally, you don’t want carbohydrates being held up in transit with heavy meats.
There is a lot of support for L-glutamine to help with repair of your intestinal lining; this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day, one before breakfast and one just before you go to bed, and you can have this in a light cordial drink.
Other positive things you can do is to start doing some exercise if you don’t already, as this will really help with your gut motility, and your general health. Crucially, hard exercise burns up adrenalin which will also help get your anxiety under control. A friend of mine says that “adrenalin that is not used by your muscles goes to your guts” and there is probably some truth in this.
Dealing with Flare-ups
First thing is, fix your SIBO as described above. But if you are on top of your SIBO, then a bowel toxin usually hits you 5 to 8 hours later as the food gets to your large intestine. The first line of attack is ibuprofen which is far more effective than paracetamol for bowel pain, and I find that 200 mg alone is enough. Second, a couple of Buscopan will stop the cramps. Third, have available some linseed (seeds) and natural aniseed (Star Anise), and make the following tea: in a saucepan, add 1 teaspoon of linseed, ½ to 1 anise star, 1 teaspoon of sugar, a squirt of lemon juice (bottled is fine), and one mug full of water. Boil to simmer for 3 to 5 minutes, then sieve off the hot liquid back into the mug. This is a very effective remedy that I have used countless times, it really does help. The reason that it helps (anecdotally) is that the “gooey” linseed extract coats the intestinal lining. There may be some truth to this, as some propose that the mechanism of inflammation is a chemical attack on the mucus lining of the intestine which then allows food particles be exposed to the more delicate tissues underneath, causing inflammation. The linseed goo would provide a temporary replacement to the mucus lining, preventing further inflammation.
A lot of this was taken from the inspirational paper “Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation, by Aglaée Jacob, MS, RD; Today’s Dietitian; December 2012, Vol. 14 No. 12 P. 16”, and several other papers, but it does fit exactly with what I have experienced. Please reply if this works for you.
Thank you so much for your comprehensive reply!! I will take a proper look at what you suggest, a lot of what you have said makes total sense.
It’s very difficult to do the fasting inbetween meals when you are severely underweight. I am struggling no end with SIBO. UK Drs says breath tests are unreliable and say SIBO isn’t cause of this much weight loss. I can’t seem to put weight on. I have had rifaxamin prescribed on NHS- your GP can prescribe it if a gastroenterologist advises it. The brand name is targaxan. It lists so many side effects not sure on risking taking it.
Hello, I am not suggesting that you eat less in a day, but that you eat the same amount of food during three meal times only, with clear spaces in between. This gives your digestion a better opportunity to fully extract the nutrients from your food. The space between meals gives time for your clean up of your infected small intestine.
Thank you. I have been eating a very limited diet. I eat 3 good meals and one snack around 4pm ish, meals are usually chicken rice potatoes olive oil coconut oil, boiled carrots. I suffer dreadful constipation.
I don’t think I tolerate carbs well but have multiple food intolerances. If I take rice and potatoes out it leaves me low on calories and I am severely underweight. I take a multivitamin and worryingly my blood tests show elevated folate and b12.
Have you tried probiotics?
Yes various different ones. I have just ordered VSL 3 as this gets good reviews!
Hi lm waiting to have sibo breath test my gastroenterologist is booking it I’m in England an have tried rifaximin twice an have just picked up my 3rd script. It works for me for around 4to 6weeks which makes my consultant think l have sibo. I have tried all the recommendations for probiotics spending fortunes but l willing to just to cure myself of this awful condition I have had for 19 yrs an it’s worsened over the years l do fod map which helps but isn’t a cure for me. I’m also waiting for my 3rd colonoscopy. Will let you know how it goes lm hopeful if it is sibo l can control it
Please don't forget to come back and tell us how you get on. Many thanks. Maureen.
will do Maureen im wating for app to come through have colonoscopy ist in next 2 weeks waiting to go pick up scripted for picalax as hate movalax lol
Hey
Yes i know all about sibo/candida.
I have always had minor ibs... knew what my trigggers were and just stayed away and lived a relative normal life.
Well that was until i fell over my dogs out walking , face planted and knocked and chipped all my front teeth so bad i needed 4 lots of root canal YEAH!!!! It hurt to heck.
Also alot of antibiotic( metronizadole) being main one.
After about three month of this constant teeth and antibiotics my teeth got better but my body got worse...
I kept comin up in hives, psoarsis, i was pooping about 10-15 times a
Day, i couldnt keep anything in, i couldnt stomach foods esp bread, yeasty things, i was tired and fatigued....it was so bad i went from a
10st3lb women to a 7st5lb women in 3 -4 months... i looked horrific.
Eventually i paid to see a gastro that soeciality is ibs....
As soon as she saw me and i told her what had happened she knew what it was....
Candida/sibo coz of the antibiotics had basically killed all the gut bacteria in stomach.
She sent me to a nutritionalist that specialises in this as antibiotics will
Make it worse.
So i saw a man who was fantastic...
He gave me a list of do and donts..told me how hard the next 6 weeks would b but said if u stick to it u will never look back...
Oh i stuck to it like a absolute geek... i didnt do a bad step as i was determined i was so ill i couldnt do it anymore.
Well 2 years on i more or less still stick to the diet... im now 8st 7lb.
Feel and look great. I have NO IBS.
Rarely have a flare once in a blue moon usually through alcohol!!!
It was best money and thing i ever done
And when i got re tested i had the most healthiest bacteria in belly she had seen in ages....
Who was the guy you saw? I would pay to get proper advice!
His name was mark but i cant remember for life of me what his name was ... he ran his business from his home in rainham kent but he was looking to go into premises somewhere near there... he works with athletes to...
i mean i can give u the diet as i still have all the diet sheet here
Yes definitely interested please 
Its quite disgusting as u actually see the “ die off” they call it...
It all comes out in ur 💩
Hi - i have had 3 courses of rifaxmin for sibo. It works for about 6 months for me. It is helpful to do a 3 month low fodmap diet after the antibiotics to help starve any surviving overgrowth and also to practice meal spacing to get the small intestines working to clear bacteria while in fasting mode. Check our alison siebeckers website for treatment and preventing relapses. The herbal treatments dont work for me at all
Hi, what symptoms did you have with SIBO? thanks.
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