I am wondering if anyone had any experience with SIBO? I recently received the diagnosis.
Did you find something that worked? That didn't work?
How did you feel mentally before and after treatment?
(I have developed severe anxiety after herbal supplementation only after a couple days, which is not subsiding).
Thank you!
I had was diagnosed with SIBO 6 months before my b12 deficiency!! I really think it has something to do with it! I was severely bloated and constipated ALL THE TIME for like 2 years! And then BOOM - a b12 deficiency 6 months later!!!
My GI put me on probiotics and said he may switch me to antibiotics if I’m not feeling better in a few weeks. He can’t say whether this caused my absorption problem but my Neuro thinks it’s possible. Either way I am on b12 injections and thank god for them every day!!!
What symptoms did you have with SIBO? You are like the only other person who I know with it! Many have never heard about it! And when did you get diagnosed w b12d?
Unfortunately I never really received my b12d diagnosis. Doctor suggested B12 injections for energy. I was light headed sitting down, was unable to comprehend what people were saying to me, vision was going dark, couldn't sit up straight longer than 3 seconds, constant sighing, etc. but those all got better after receiving B12 injections so I know it was a part of it. Still have other symptoms, but at least those are gone!
For SIBO related symptoms I have bloating, gas, constipation, stomach discomfort all the time but worse when I eat.
Probably more, but brain fog as well!
I have adapted to the digestive symptoms as I have had them so long, but the worse part is I feel very sick, brain fog, tired, etc. I wonder if we are not absorbing other nutrients as well?
Have you noticed any improvement with the probiotics? How long have you been on them so far?
I did notice a positive difference with the probiotics in just a few days. BUT - the constipation was still an issue until b12 injections and it cleared up almost immediately!!! The symptoms you describe sound very much like b12 deficiency. I had almost all of those. With the probiotics and b12 injections I am feeling 90 percent better than I have in YEARS!
I definitely noticed an improvement too with my digestion after B12, which is great. However, still not quite there! What type of probiotics were you recommended?
That is great you are feeling better!
Was starting to get tested for it before lockdown but then they found problems with my liver and biliary system and that my pancreas has atrophied and stopped working which took the focus off the SIBO. They and I are convinced that's what a major part of the problem is but I'm waiting to be able to get back in the system to get any further with it. Would be very interested to know how you and others get/got on.
It definitely sounds like you need B12 jabs and supporting supplements too.
I'm sorry to hear you are going through that right now! How did they find that out, through a blood test? Do you mean they think that SIBO contributed to those other problems you are having?
Thank you!
Once I was well enough (having had enough B12 jabs and supporting supplements) to cope with going to the Dr's and dealing with the system, I asked for an investigation into my absorption problems.
I went for a consultation and the possibility of SIBO came up because I had noticed much better absorption of vitamins and minerals after a couple of courses of antibiotics, with a subsequent decline again in time.
I know I did have some blood tests but I think it was when I had a feacal sample test that they decided to ultrasound scan me which was when the pancreas and other problems showed up. They only managed to give me a general MRI scan before lock down but I was due to have a special pancreas scan and a CT scan, among other tests and all sorts!
A dose of antibiotics a few weeks ago had a significant but short term effect whereas taking pancreatic enzymes for the last couple of months has barely done anything, which also points to SIBO.
What other supporting supplements do you take?
How did you notice you had better absorption? Did you just feel better for a period of time?
What type of doctor did you see? I saw a GI doctor here, and she basically told me to take a PPI and meditate to make my stomach pain go away. I hardly had any tests - only colonoscopy and basic blood work. I had to go outside to a naturopath for my sibo diagnosis.
I find it hard to believe how dismissive some of the medics can be! Why on earth did they go into medicine if they didn't want to believe that people could actually BE ill!?! With genuine problems?Just for the money?? You'd have thought that they were getting paid enough to incentivise them to do their job and actually try to help you!
Anyway! 😁
Because the processes of cell replication, nerve function and energy release that B12 is used in, all require a wide range of other things to work properly, most people benefit from taking a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium, magnesium, iron and vitamin D - ideally from their diet.
I need all these things and don't seem to absorb much at all (of anything) through my GI tract so I have to take a raft of supplements in addition to a nutrient dense diet.
Unfortunately, if I do have SIBO, this rich, healthy diet will also be helping the bacteria colony - but without everything being regularly topped up, to what should be beyond toxic levels, every few hours, I suffer horrible deficiency symptoms.
It's all a bit "catch 22" without the right antibiotic treatment.
Yes I have sibo regularly when my digestion gets out of kilter because of diet or antibiotic use. My gastroenterologist said it often starts at the site of surgery (Ileal resection) and is difficult to eradicate because the scar tissue provides an ideal home for the anaerobic bacteria that cause it. I starve these bad bacteria by going on liquids only for a day, no sugar, and then build up to more challenging food (soup) and add probiotics for a while. I seem to be OK eating at home, but often eating out sets it off. I think it is because I know what is in my food and I avoid wheat, dairy, alcohol and sugar, which are all challenging. It is shitty, but I know when it is happening now. My B12 injections are vital. Look up FODMAP, Dr Myhill Etc. I have had B12 injections and SIBO for 50 years now, and have had all sorts of diagnoses over the years. This protocol works for me and i take comfort from the fact that they are discovering new things all the time, so good luck!
Yes my daughter did well with fodmap.
A very limited diet but regular normal ibowe movements only bloat if too much of one type of food eaten.
Was tested for celiac but despite negative and some peoples views .is so mush better gluten free. Diary free fructose free red meat free egg free ect
This was not done lightly she used to live to eat. Loved diary .
She narrowly missed going down the route of being tube fed.
So definitely look at fodmap.
Its arduous and difficult but if needs most csn change your life.
She had no guidance with this just offered ant acids ect.
Had regular b12 injections
I used to make chicken clear broth/stock only with carcass and 'green herbs' a really good gut and nutritional food. I would diver 29+ pots frozen as some days thats all that would be tolerated. Then add things to it.
Before this were other soups but found onion barley potato a problem??
The gastro at Addenbrookes support her and do nutritional profiles. They admit they dont know. Lots of seeds nuts miso almond fortified milk avocados chia amongst her saviours. Lemons in abundance and berries.
Alcohol free
Not sugar free but low sugar ad caffeine free
Buckwheat pasta a good base I find if I struggle with a meal for her. .
Cakes are expensive and taste like cardboard whatever I do. So I tend to make cookies with coconut oil and dark chocolate. Cheap better as no sugar or milk added.
Or flapjacks. When I was more well a seed loaf . Bit too much at the moment as lots of weighing soaking. But freezes in slices.
Thank you! I understand being told to take antacids - I ended up on PPIs for years! I was once again offered this by GI, but I declined.
I really do need to work on my diet - regardless of the sibo. I currently don't have the energy to cook so it took an unhealthy turn lately but that is one change I want to make regardless.
And I am sorry your daughter went through all of that! It is very nice to hear that she has had some positive changes with the diet changes though. It gives me some hope - I welcome any improvement at this point. I would love if someone could cook for me too!
Hi Swimmingthrutreacle! Do you find that diet is enough in eradicating SIBO?
I have had diet changes in the past (ex. gluten free, no alcohol, coffee, decreasing dairy, etc.) but I haven't had much success. Maybe I need to do something more strict. I will look more into FODMAP. I have heard of it before, just never tried it.
I almost want to just do something like diet until more research is done!
I have PA (confirmed) and Exocrine Pancreatic Insufficiency (EPI) and have had confirmed SIBO twice. I do not take probiotics to shift SIBO as my gastroenterlogist says you need to clear the overgrowth of bacteria first. His view is that the overgrowth of bacteria is about location, not just the tuype of bacteria. What does that mean? According to him the overgrowth is of BOTH good and bacteria in the WRONG location (the small intestine) which should be relatively clear of bacteria of any kind. His view is that you kill the bacteria first using antibiotics. There are very specific antibiotics that operate within the small intestine only and do not act as a general antibiotic that kills bacteria in the colon. The success rate is only about 60% however. I have also taken oil of oregano softgels three times a day with caprylic acid softgels and they have sifted it just as well in my opinion. This is my personal experience. Interestingly if you look at google and insert 'oil of oregano and BMJ' you will see a list of studies they support or have writen about which discusses the efficacy of this treatment. Once you have shifted the infection of SIBO you can then start to populate the gut with probiotics to correct the dysbiosis caused. I personally use 100 billion CFU probiotics twice a day. Some probiotics are very low dose and you have trillions of bacteria in your system do for them to do any good they need to be in sufficient quantity. All of this advice is from my gastroenterlogist and form my own treatment regime. I cannot vouch it will work for you or anyone else. Others will have their own personal views and experiences. I hope however this helps in some way. Good luck.
Yes, I am told that there are too many bacteria in the small intestine, where they shouldn't be! Have you used antibiotics as well?
I will look into the oil of oregano. Did you notice any side effects or symptoms? How was your mood while treating and afterwards?
How long did you feel better for?
Also, how were you diagnosed with EPI?
My gastroenterologist confirmed SIBO through breath testing. He then prescribed rifixamin which is a special type of antibiotic. Make sure it is one like that which does not go on to kill good bacteria in your colon (e.g. metronidazole). There is no known side effects from oil of oregano. Use the ones from Zane, they are excellent and use the softgels. I take 2 three times a day. They were very effective for me. I used them with caprylic acid soft gels, 1 three times a day. To get tested for EPI the symptoms are usually those of malabsorption, undigested food, stomach pains that sort of thing. Your GP can order a fecal elastase test. Easy to do and the results are clear and free if doubt (for once!). Good luck with it all.
Hi kitty kitten , SIBO is very difficult to eradicate, I have had it for many years now . Rifaxamin is the drug recommended , together with a low fodmap diet . If Rifaxamin does not work first time you need to go at it again with another round. Probiotics are not recommended whilst treating SIBO ,it feeds the bacteria and can make it worse. Rifaxamin unfortunately is only prescribed privately and can be very costly . If you can go down this route I recommend you have another SIBO test regularly throughout the first year to see if it has lowered or eradicated , unfortunately it’s a tough one as I said to eradicate. I am trying another regime of Rifaxamin at present, 2 weeks at 3x daily and now for 6 weeks 1 every other day . It may be the case that I take Rifaxamin long term every other day . I will be tested again after this course , I can tell you I have tried many other antibiotics to no success . There is also a test which is rather invasive to see what the actual bacteria that you have in the gut , this is done by a biopsy . It’s rather drastic and if your symptoms are not severe I would advise against it,
You could also try other methods of natural herbs , which I have also done . Also a very drastic diet which consists of a fluid diet for two weeks, this needs to be done under a trained dietician who is trained with SIBO , again very expensive, and many give up , its tailored especially for you . There are some good low fodmap diets on the web which are a really good way to reduce your symptoms .
The anxiety that you have experienced will be the SIBO causing die off. That’s a really positive thing , if you can stick with it , keep going . If not cut back on your herbal regime . Don’t give up unless you really can’t take it any more. If you need a list of herbals and the sibo chart I can give it to you . You could also have low Caecal PH and carbohydrates malabsorption. All could be a contributory factory as well as food poisoning which normally starts the Sibo off in the first place, you really need to get a good sibo functional medicine doctor on board to guide you and get the appropriate tests done. Good luck !
How have you found you felt after taking Rifaxamin? Did you have an increase in anxiety or depression? Any other side effects?
What are your symptoms of SIBO? Have you been asymptomatic and felt better between treatments?
I stopped the herbal supplements over a week ago (only took it for 2 days), and my anxiety is not subsiding yet. I was having severe side effects as well, that my naturopath said was die off. But it wasn't something I feel I could push through. I'm afraid that Rifaxamin will cause the same symptoms?
How do you test the carbohydrate malabsorption?
There are so many options for treating this, it is very overwhelming!
Rifixamin is available on the NHS at least in Scotland as I got it. I agree with your other comments but I’m finding the herbal treatment works well.
Rifaxamin is the best choice of antibiotics for SIBO. Less side effects . Do not touch doxycycline if you are offered this drug, it causes major problems .I was rather unwell on it ! My SIBO was off the Richter scale , I reacted to the first round of treatment with Rifaxamin , flu like symptoms for the first few days . But none since and I have been on this drug so Many times now.
I don’t know where you are based , I have all my tests done at the functional gut clinic in London . You can google them . If you have insurance. Insurance companies will cover all their tests . Don’t waste your money on home DIY breath test kits . This clinic is for gut problems ..They are accredited to take all these tests . I had the smart pill which confirmed that I had low Caecal PH . All my hydrogen breath tests are taken at this clinic, It’s a long elimination process especially if you are seeing no results of clearing it. I don’t know your medical history . But if you are suffering with severe anxiety etc through the die off process , you could be reacting to a surge of histamine within your body causing very unpleasant side effects, try taking a histamine tablet that might help . Also keep off all histamine type food . From processed meats to oranges etc .google histamine intolerance or mast cell activation syndrome. My SIBO caused intermittent upset stomach, most people with SiBO will also have IBS which again can be confirmed now with a blood test and blood tests to confirm markers for food poisoning . Unfortunately you can’t take these tests your self , you can only have them taken by a specialist gastroenterologist or a consultant who specializes in SiB0. Many doctors still do not understand the condition and have never heard of it .You could try a product called similase by nutri Advanced it’s a good digestive enzyme. I also take Candex SIBO, again made by nutri advanced . Also a tablet called calcium magnesium Butyrate, it’s a short chain fatty acid . SIBO sufferers are all low in this .
Believe me I have tried the lot and these are the ones I now stick with , with no side effects . SIBO can cause a lot of weird symptoms , ranging from
Anxiety to muscle and joint problems , it creates an autoimmune response . Your bacteria is supposed to be in your lower intestines not your small . Another good thing that you could do to help your self is to not snack and leave a good 4 hours between each meal so the food does not sit in the small intestines, and cause fermentation. There is a lot that you can do for yourself. Stick to the low fodmap diet is a must and helps imensly , find out your triggers , I.e leave off all foods that make SIBO worse, you should know your triggers . Good luck with it all
Since replying first time I have had a general gut infection following antibiotics. My own advice didn't work......After 3 weeks of no joy and continual diarrhoea I reread this conversation and ordered some oregano oil. AMAZING quick and lasting results, thank you!
My GI thinks I have SIBO. This might explain my b12 issues even though my intrinsic factors are normal.
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