View Full Version : SIBO
Has anyone been tested for SIBO? What were your symptoms? Apparently a lot of people get misdiagnosed with IBS but really it’s SIBO. It can cause problems for years....
I do get the impression that SIBO is somewhat like LPR. There are those, professionally, who do feel that it has merit and some of the tests are valid and then there are others who do not think that as a condition it has a diagnostic means to be accurate or valid.
The Gastro that I saw did not believe, after many many years of work in that field, in the value of diagnostics or the damaging use of antibiotics in its treatment.
I remember back to my ENT consultant diagnosing LPR but the Gastro didn't believe in that.
Great fun.
What are your symptoms that you feel could be SIBO related...?
I have constant bloat and acid reflux and weak/numb hands
When reflux was a problem for me I was initially prescribed PPI's. That is quite typical and I tried two different types over a period of six months. They really did not help at all. It wasn't that I was producing too much acid, it was more that it wasn't staying where it should.
Diet helped somewhat but perhaps lifestyle and anxiety control might have improved it more.
It didn't help as all the tests that I had done came within the "normal" range and the two Gastro specialists that I saw were both dismissive of the LPR diagnosis, the ENT consultant noted the damage being done to my throat and vocal cords.
Have you had any tests for your reflux or just been put on PPI's...?
Initially it was my first ENT who put me on a PPI and the second placed me on a different one.
The Gastro that I saw was not happy about that.
Bloat type symptoms, for me, are usually discomfort and pain but lots of noises going on. Somewhat loose as well. Have you seen anyone about your symptoms..?
Best wishes
Thanks for your response. I have been to the doctors but due to limited resources due to COVID there’s only so many tests they can do. The doctor just referred me to GI as he said my symptoms started with my ibs. My arms seem to get more tingly and numb the minute food empties from my stomach and I get hungry. It makes me feel anxious. It calms down after I eat but sometimes can still linger a little.
Never heard on this until now...... And I've been here for a while ;)
Positive thoughts
This whole Covid situation has certainly made life most difficult for those awaiting tests or investigations. During the lockdown I remember going for a colonoscopy, having had to go through the testing for Covid. It was very surreal going into a almost empty private hospital for that to be done.
Have you tried addressing your diet in regards to reflux..? I tried both the AWD and FTD type of diet, buying the books and apps etc.
That gets a little complicated if you have IBS / SIBO conditions as it requires some thought.
Life at the moment isn't easy for many of us.
I wish you well :)
A hydrogen test, where you blow into a ballon, I think, then it’s tested if you have a gut flora inbalalance. Antibiotics are a major cause. I’m being tested for it next week as have severe bloating, foul smelly gas and stools and belching to name a few symptoms.
A hydrogen test, where you blow into a ballon, I think, then it’s tested if you have a gut flora inbalalance. Antibiotics are a major cause. I’m being tested for it next week as have severe bloating, foul smelly gas and stools and belching to name a few symptoms.
I had been on antibiotics for months at a time, before my FESS type surgery resolved my sinus issues. Stopping the use of them doesn't just stop the side effects either.
I had 4 - 5 weeks worth in a 12 week period, added to a drug trial that I’m on, which causes gastric issues. This couldn’t have commenced at such troubling times with Covid and not being able to get to see anyone. I’ve had to live 6 months imagining all manner is illnesses, which has really impacted my life, both professionally and personally. The missus had enough and packed her bags on Thurs and has gone to her daughter. My stomach has bloated, I look 6 months pregnant, but I’m loosing weight. I’ve had many Covid symptoms too. I managed to get to see the trial team Drs last week, who are great. They said all the tests I’ve had are reassuring as they have come back negative but no one has looked at my gut. The drug, though out of my system, causes GI issues. I got them for months when starting the trial and it eventually subsided. Jan, I was asked to increase the dose. This has been when the problems have happened. I was told the breathing issues I’ve had, dust feeling in my throat, coughing, a feeling of being unable to swallow and a lump, chest burning, constant belching - I can go on, is probably Silent reflux and I have a gut flora imbalance. My GP was saying Covid, which has given me anxiety as I have underlying health issue. Funny enough, when taking probiotic I felt worse. I think my pancreas has had a hammering from this drug, and I’ve just read the pancreatic enzymes are raised when taking this. I think I have malabsorption as my stools are floating and sticky at times. Not sure if it could be gastritis? I’m waiting to have a camera down so hopefully will get to the bottom of it, but I’ve lost 6 months of my life because of this and developed anxiety.
I done the candida test too which was positive. Do I have a yeast overgrowth too.
My goodness, what you describe does not read to be good.
I can understand and appreciate your concerns.
As a very broad generalisation, not wishing to cause any offence at all, try and be wary of joining dots...
It isn't easy but also be aware of reading too much into what you read. I have never found Google to be my friend in that respect.
Try and find a health care professional, eg doctor, who you can have faith and trust in.
This whole Covid situation creates a new base line of a heightened sense of anxiety for us all.
I can't see that ending anytime soon either.
I was actually advised by a consultant to look up the full side effects of the trial drug as he said everything I described was there. He also mentioned the antibiotics. GP will not accept it. I also get a lot of information from a health shop owner who I know and trust. Agree, Covid is here to stay for the time being until they get a successful vaccine or cure. Also agree that really researching symptoms and illness can cause heighten anxiety and lead into things that may necessary not be the problem. Hopefully I’ll get this sorted very soon, but think things are very slowly calming down.
I can very much understand needing to be as informed as you can be, regarding that drugs trial. Increasing your dose as you were instructed to do could well have lead to much of what you are still experiencing.
We are all so different when it comes to side effects from medication. For some reason I do find that I typically react not very well when given medication, needing to take medication each day, and have done for many years, still gives me problems.
It can be frustrating when you have differing advice from specialists and doctors.
I remember the two ENT consultants I saw both diagnosing LPR and yet both the Gastro specialists very much disagreed with them..! Apparently that is quite typical for those suffering with LPR. Much of the diagnosis and treatment still centres around traditional reflux and not that of non acidic reflux, which could include pepsin etc etc.
Sometimes you have to become the "expert" in trying to push for answers and tests etc. But that can often lead to heightened levels of anxiety and symptoms. Not sure what is best there.
Also the impact of dealing with your physical and mental wellbeing can have a severe impact on those around you, that is very hard to deal with. If things become chronic and long lasting it can be very debilitating, difficult for those who do not experience that to understand or be supportive.
I have spent, mainly in the past but not exclusively, a lot of money on health supplements. Especially to try and help with LPR and gastro issues.
When you add anxiety and conditions like IBS etc into the equations I sometimes get the impression that those are what doctors only see as their response.
One of the better courses that I did was a twelve week CBT mindfulness based one, that did help somewhat.
Yes, it’s frustrating when Dr opinions differ. A problem I have is that my partner cannot get her head around why I’m panicking and not myself. She said to my cardio that I was suffering extreme anxiety and depressed, which he has mentioned in a letter to my GP and now I’m not being taken seriously. I’m not depressed but anxious as I’ve not been well for 6 months now, and I have not been able to get the support needed from GP. Even now they are not seeing people yet I’ve seen a dentist!
As someone that has been diagnosed with LPR, did you have bloating and a strange sensation in your throat with a very light sour type flavour in the mouth?
I do think things are slowly improving. The drug trial team have said my issue is not the drug as it would be out of my system. I agree that it’s probably left, but that doesn’t account for any potential issues that it has caused which are slowly rectifying. I will discontinue the trial now once this has been resolved.
Where did you do the mindfulness CBT, I would like to look at that?
I use to have Reiki which I found to be beneficial. I’ve have contacted him again to see if I can get get some sessions.
I can understand and relate with that. It is very difficult to be taken seriously if you have some "labels" attached to your notes. I had to have a pretty strong conversation with my GP / Specialist that even tho there is a IBS diagnosis on my notes that people with IBS still have their baseline and if things are persistent beyond that baseline then they too need investigation. Fortunately I was able to get a colonoscopy in April (lockdown) and had a surgical procedure whilst that was being done.
With my LPR (many many tests done) my ENT specialist was very supportive, noting damage to the pharynx and vocal cords. Yes those sensations you describe were noted. Remember also that PPI's and typical ant-acids can't help for non acidic reflux. Pepsin can be aerosol in its delivery to those areas, including your ears and sinuses. Bile reflux also will not be helped by PPI's etc.
I simply do not have the faith or confidence to believe that just because a certain drug is out of your system then that is the end of your symptoms. I was surprised to read that a drug that I take daily is considered to be ototoxic, tinnitus that I typically relate to LPR.
From the months of using antibiotics I do feel that they have really messed up my digestion long term.
SIBO testing and diagnosis, including treatment, is laced with problems and ambiguity. Then again so is that of LPR.
For LPR I was fortunate in selecting a specialist who had a clinical interest in that.
You will be very lucky to get a referral for a mindfulness based CBT course. I got mine through my doctor and "Healthy Minds". We used to have group follow up sessions, until the government and local authorities cancelled them due to cut backs. They might be still available in your area..? You would need to chat with your GP. For me they were so much better than the typical CBT based counselling.
Support and understanding from those "on the outside of your symptoms and feelings" is most difficult. I wish you well with that
Do you take daily tablets, if so what..?
You have described the effect on the throat so accurately - “aerosol in delivery”. I was portraying the sensation like a dust. I found today that coffee causes it too, though it is not so severe now. Back in March, the burning in the throat, mouth, eyes and warm burning air whilst breathing out through my nose, was excruciating.
I also suffer regularly with full and ringing ears which commenced when this all started.
The meds’ that I take follow.
Omeprazole
Bisoprolol
atorvastati
Ramipril
Aspirin
Solgar Vitamin D 4000iu
Viridian Co-Q10 with MCT 100mg
Solgar Fish oil concentrate - 1000mg
The drug on trial is Semaglutide.
i think as it currently stands, my relationship is over. She will not come home until I get help. She’s turning this around that I have mental issues going on. I’ve been feeling ill for 6 months with no support from the medical fraternity. My stomach looks like I’m 6 months pregnant, I’ve had problems breathing, loss of appetite, nausea, hoarseness, constant cough, chest pains. Many of the symptoms can be attributed to COVID and that’s what I was told I probably had. No wonder I’m anxious and not myself!
For many who are diagnosed with LPR, rather than "std" reflux often medication like PPI's are largely ineffective. As you know they inhibit the production of acid. It often isn't about too much acid being produced but it not staying where it is needed. Many ENT's, and others, are also aware that it can be non acidic types of reflux which can damage the larynx, sinus cavities, eustachian tubes in the ears, airways and lungs etc etc. The aerosol type gases secrete pepsin within these areas, a digestive enzyme that only should be in the stomach, that remains within those tissues for a long time. It can then be reactivated and start to damage those sensitive areas.
I know that my last ENT was very much supportive of that but both the Gastros I saw were quite dismissive. It seems that LPR is very divisive when it comes to professional people diagnosing and treating it. Typically, in my experience, ENT's support it and yet Gastros remain most sceptical about their findings.
There is a peptest which can be done with your saliva, a Professor Alyn Morice uses that as a diagnostic aid. He has found pepsin in peoples lungs, breathing and cough etc, and other areas as I have noted and that is pretty hard to dispute as that enzyme should only be in your stomach.
A person that I know has seen him and there are, iirc, a couple of videos which show him talking about this.
The tinnitus can be a big problem for me, other times it is "just" in the background.
Noting that medication you are taking I can only imagine that their potential for side effects are not good. I can't remember if I had read it or it was one of the consultants I saw who mentioned to me that side effects can be cumulative when combined with other medications or over time when used daily. It is most important that we keep taking our medications as prescribed and need to talk to our doctor / specialist about any changes.
Sorry to read about your relationship, wishing you the best there.
The symptoms mirror what I have and currently experiencing now. Really interesting to hear that it can cause sinus issues as that’s what I had in March and it was bad. The GP said assume Covid - must add I had other issues too, mainly throat related, extreme mucus excess, keep having to clear my throat, hoarseness, cough, breathing issues, burning, chest & back discomfort, cramping, pain, stomach noises, foul smelling gas and very gassy swollen stomach. I’m convinced it was the Semaglutide - look it up, differing reviews and a lot of GI issues. Added with the many antibiotic courses.
Over the past few days my stomach is becoming less swollen. I applied some pressure to the centre stomach region, just above the tummy button and I immediately felt the throat sensation - pepsin. Is there anything that I can take or do to stop this?
I have some concerns that my pancreas has been affected. I keep getting floating stools that mark the pan. I know there are bloods that measure the pancreatic enzymes but read the semaglutide raise it, so not sure if that would be a good indicator. I will ask the trial team today, but they are not attributing my issues to the drug. The annoying thing is with Covid taking over the health service, I have been unable to monitored as the team usually would have done.
I spoke with a nephrologist recently who said he thought my problems were drug related. This was before he knew I was on Semaglutide. Omeprazole and Atorvastatin can play havoc with the gut.
It’s a relief to speak with someone that can relate to the symptoms that I’m experiencing.
Apart from the pretty constant sore throat, as well as other throat sensations including hoarseness, my sinuses and ears were not good at all.
I had not, at that stage, related my throat clearing, mucous build up and Post Nasal Drip to all be part of typical LPR symptoms. I was fairly ignorant of how LPR can present and the symptoms that go with it.
I now understand why it is termed a multifactorial condition and whilst it can be typically diagnosed by an ENT it's management can be most difficult.
Traditional reflux treatments can be somewhat inadequate.
I did read about a couple of drugs trials which didn't work out that well to try and limit the refluxing of Pepsin. It doesn't have to be in a liquid form but a gas or aerosol burped up into your airways.
As well as LPR impacting in my sinuses, and ears, there were noted structural issues with my maxillary, frontal and ethmoid sinuses which required two FESS operations to correct.
Diet and lifestyle including anxiety and stress plays, imo and from what I have read, a very big part in the management of LPR.
I have used with some success high alkaline water, above 9 in the scale. That helps to deactivate and destroy the Pepsin that it would comet into contact with. Of course as pepsin continues to be deposited then that process is ongoing.
I also irrigated several times a day using a more alkaline mix. Sometimes I would also use a facial steam machine with alkaline water to breathe that into my airways.
But, for me, the irritating cough was fairly minimal, others are more impacted with their airways and lungs.
High alkaline water can be bought, made with a filter type jug or, less ideal, made by using sodium Bicarbonate in water. The latter isn't much use for people with high BP as it contains lots of salt.
The other symptoms that you note, digestive disturbances and gases etc... Remember that LPR is multifactorial and presents with a wide range of symptoms.
I knew one person who has LPR and she told me that her specialist related it to IBS of the upper digestive tract to what the more typical IBS is of the lower digestive tract.
I can relate to so much of what you mention. I’m not sure and I really do not want to tempt fate, but I feel as if things are slowly improving as time goes on. I hardly had the aerosol sensation yesterday though my stomach was growling after I ate. When this all started the symptoms I experienced were all attributed by the Dr to a respiratory infection and to assume Covid. Some Covid suffers even describe a dust sensation in the throat. Now I realise mine systems stemmed from the stomach - for sure pepsin. All was probably caused by the Semaglutide injections. I read that they should be given at least two inches from the tummy button. I inject just to the bc side! Whatever ailments this drug caused is, I believe, slowly starting to settle. If you read some of the reviews of people that have a bad time with it, it’s all GI issues.
I think the copious amounts of antibiotics never helped either.
One concern that I have is my stools are still floating at times and I feel if I am loosing some weight. I know this can be pancreatic or the the stools contain too much gas, which could be the case. I think this is can also a symptom of SIBO.
Not that I want it, but I have chased up the referral for the endoscopy as my concern is this second wave of Covid is coming and all the services will shut again.
As you have noted I can't see how Covid is not going to be with us for a long time.
Sadly I also don't see how the NHS, including our GP's, are going to be able to deal with the backlogs of people not being treated due to this crisis, or the already growing waiting lists reduced for people to get diagnostic tests done.
It is difficult enough to see your GP and I absolutely do not like a video consultation.
It makes me wonder how many people are aware of the potential long term issues associated with antibiotic use. Of course it is a balancing act of what they are needed for against that of the risk that they present.
I needed to be on one particular course for quite a long time before I could get my second FESS surgery.
Totally agree re the GPs. I am one that is anti the phone and video consultation. I had one zoom call and the Dr sat there yawning and looking, I assume at his screen. He made eye contact once. It amazes me that I can get a dental appointment cannot get to see a GP unless I present with something of concern.
I was told there is a 3.500 backlog for 2 week endoscopes and 15000 and a similar number for echo scans. I do hope that my suspicions prove to be incorrect, but I believe we will be hit with a second wave by the end of next month, beginning of Sept. not that I relish it, but I am desperate to get this endoscopy concluded prior to services shutting down again.
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I have had a couple of video consults with a specialist using Zoom and then another using MS Teams, similar arrangement. I simply do not like it at all. Trying to get a face to face doctors appointments is most difficult (perhaps not quite impossible) but to feel the need to discuss your issues with a receptionist to try and get a video consult with a GP is most uncomfortable. We can't yet book appointments with our doctors practice. Trying to have continuity with seeing one doctor is impossible, it was difficult before Covid. So we get bounced around with either stand in doctors or different ones each time.
It is not a good arrangement.
Yes for some reason getting a dental appointment with our regular dentist has proven to be much easier to arrange, not sure what is going on there...!!!
I had an appointment with a top gastro on Monday evening. He diagnosed pretty quickly SIBO and said this would cause all the symptoms that I have had, even down to muscle aches, joint stiffness and anxiety. The bacteria really messes with the brain chemicals. He order two faecal tests to rule out inflammation and blood. Told me to start a course of Symprove for 3 months. If I do not feel any improvement after 2 weeks, we will prescribe a specific antibiotic to destroy the bacteria. Also advised that I look at FODMAP. No requirement for an endoscope.
Thank you for your advice as you were absolutely spot on!
I said to the gastro that I cannot understand that 4 Drs have dismissed me when I’ve questioned whether the cause could be gut bacteria overgrowth especially after all the antibiotics that I have taken.
That's a good result for you.
Hopefully you will respond to his suggestions.
Both the Gastroenterologists that I saw were pretty dismissive about a SIBO diagnosis. The last one pointed out the potential for more harm than good to come from the antibiotics they could use. C-Diff was one of the risks of using them, as explained to me.
I do find it most difficult and annoying when you can't seem to get an agreed opinion.!
FODMAP seems to have a lot of merit in these circumstances, good luck with that. I imagine that it will mean some changes for you.
Take care and you're welcome if anything that I've mentioned has helped.
I keep everything crossed but feel positive. It was a real relief that nothing I said phased him and that he could relate everything to the bacteria overgrowth.
The FODMAP list is interesting as a lot of the foods listed under the avoid group, I regularly eat.
Your advice and experience has been priceless. You were the first to understand and correctly rephrase the throat sensation as “aerosol effect” I had never heard of Pepsin until you mentioned it, but you were right. Thanks again.
I think there are many on here that woukd benefit from taking Symprove, as opposed to accepting an IBS diagnosis Really goes back to the original posters post. It would seem SIBO, gut overgrowth of yeast, is common, problematic, but rarely diagnosed.
I remember once reading an article which suggested that 80%of those who experience IBS also had a type of SIBO.
From what I understand it can either be methane or hydrogen dominant, leading to either constipation or diarrhoea.
There is the FTD diet which looks at the fermentation potential of foods. That also had great success with those who suffer with SIBO.
I bought the book and App for that one.
Some foods are prone, for some, to encourage an overgrowth of harmful bacteria in our small intestines.
When you start to look at what you regularly eat you then appreciate how typical that is for many people.
As mentioned LPR can be multifactorial and the author of that book I noted believes that many who suffer from reflux is due to gases being produced pushing it through the lower and upper sphincters. Hence the FTD diet.
Best wishes.
Hi Dibbler, hope you are well.
When I saw the Gastro who requested two tests. I received one of the results, which was checking for blood, but the other was pending. Chased up today as still not heard anything and informed no news is good but the PA would check. The Gastro is on holiday. Received a call back advising the result was positive and I may have to have an colonoscopy. The test - faecal Calprotectin checks for inflammation in the intestines. My result was 128, should be below 50. Adds another dimension to things! The PA, who is excellent said it could be due to bacteria. If it were tumour related, the other test which was negative, would have been positive. I will keep you posted!
A bit late to reply but I try and not visit these forums much, overall it seems to make my own issues mush worse rather than support them in a helpful way. at least this is how I'm feeling at the moment, which, like anything else in life, can and will change.
I'm in my "having a break" period as such from these types of places, just my thoughts.
So if I don't turn up here you will need to understand that :)
Reading what you write suggests that much of what you know so far supports the need to try dietary changes as suggested with the FODMAP focus. There are apps for your phone as well as books etc for that.
If you need a colonoscopy then that will appease any anxieties you might have about that procedure, which is relatively simple. The blood for me was due to haemorrhoids bleeding, which were banded during the exam.
You will be fine, try and work with your partner as well and I wish you all the best with that.
Take care and try your very best to remain calm, and do NOT overread things, often Google is not your friend.
All the best
Hi again. Thanks for your reply and I totally understand with you taking a break from the site. I think if one is not in the best of places, visiting these types of forums can be more detrimental as opposed to beneficial.
The colonoscopy is a matter of protocol as the faecal calprotectin is raised and given my age - 49. The consultants PA is fantastic and said he worked with the professor who invented the test. He would not be concerned if the range was below 250, which mine is at 128. I’m not too concerned about colonoscopy just debating whether to have sedation or not. Had one 10 years ago with sedation but would prefer to be awake.
I have purchased a FODMAP book and will look at the apps.
I have sorted things with my mrs - thanks
Thanks again for you invaluable advice. Look after yourself, take things easy and I wish you peace of mind.
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