SIBO Test Update

So, I posted few months back that I was going private for SIBO test - that's Small Intestinal Bacterial Overgrowth. I've ongoing symptoms, cross-reaction to non-gluten foods, and increasing joint damage, so SIBO looks likely culprit. Test came back that SIBO levels were normal (hydrogen producting bacteria), but levels were high for methane production. So, seems there are actually two types of bad bacteria that produce same symptoms, and the methane producing one is much more difficult to treat and needs combination of two specific antibiotics (SIBO needs an antibiotic approach, as well as dietary adaption). So, went back to the NHS consultant and it was case of having to send her the results of the test and wait yet more time (I've absolutely no faith in this consultant and I had to inform her what SIBO was, and request the test through NHS, which did not happen due to pandemic), and then I went to GP to ask for the antibiotics. GP refusing antibiotics until she has spoken to the NHS consultant. As great as the NHS is, I see it simply as a system that leads to worsening health for any gut related issues as they genuinely are clueless. This is over 15 years of me pursuing answers, and time and again having to do my own research and pay for all own tests. I've now booked a private appointment with a private gastro consultant - appointment was speedy, is face to face (for the moment) and will be a full 30 minutes. It's costing me £200 (after paying £250 for private SIBO test), and I am not working/earning. And I have to do this simply to get antibiotics for a bloomin bacterial overgrowth that I've probably had for years. I have constant heart-palpitations due to low iron/B vits that GP keeps telling me I'm ok for, and do not work due to ill health/joint pain whilst the overpaid consultant and overpaid GP carry on as normal whilst neither even knows their backside from their elbow. We all clap the NHS but there are seriously aspects to it that need major shake ups - and coeliac and gut health are two of the big NHS failures in my books. I'd urge anyone who is having ongoing symptoms despite strict gf diet to explore the SIBO route privately for the test at least, and then bite the bullet and consider a private dietician (the NHS one I went to had never heard of SIBO and laughed when I told her how limited my diet was - she had no advice for me in terms of how I could get all my vits/minerals/calcium with such limited diet. She genuienly was an idiot. This was in addition to the NHS gastro telling me I was so lucky to have to follow such a healthy limited diet and that I couldn't put on weight as many of her clients would love to have that problem) and a private gastro. I genuinely do not hold one iota of respect for clinicians at this stage who play ego-driven gods, whilst negating their patients concerns and fobbing them off with random catch-all excuses like IBS or 'just follow the fodmap diet' without ever considering, exploring or treating the underlying conditions. This has been a long journey that spans back to 15 years ago being put through multiple invasive tests for nerve pain, whilst also have gastro issues, and the two things never been treated as one, and a consultant telling me (when I asked) that there was no link between my digestive issues and neurological pain (as indeed there was). They all drive their flash sports cars, live in their big houses and grow fat off the NHS pay system, but not one single one of them has ever benefitted my health in any way, and my health has simply declined, and they are still acting the egotistical gate keepers to basic things like a course of antibiotics. And we're not allowed to complain about them as doctors are above reproach and there is no oversight.

[Penel]

Hello MiseSorry to hear about all the difficulties you have been having getting treatment. I hope you can get the antibiotics you need.

It seems to be depressingly common to struggle to get correct diagnoses around Coeliac disease: being told “it’s all in your head” is one that gets thrown around a lot.

I admire your perseverance. Good luck with it all.

This article about SIBO is from the US, for any one interested in the subject.

edu.emersonecologics.com/20...

[Hidden in reply to Penel]

Thank you for that Penel. Yes, makes no sense that basic dietary adjustments and gut conditions seem to challenge so many. Ranges from the patronising to the downright abusive gaslighting. I trust no medical professional with anything at this stage.

[nellie237]

Hello Mise, Thank you for sharing this. It may help me, or somebody else today/tomorrow.

I can see why you don't have any faith in the consultant. The SIBO test is in the British Society of Gastroenterology Guidelines published June 2014 - no dialogue, but in a flow chart on page 12 as something to check/rule out, and there is quite a bit of stuff out there about this.

The BSG Guidelines for SIBO (updated Oct 2020) don't mention Coeliac which after my limited reading I think is negligent.

I don't think the GP is allowed to prescribe the anti-biotics, but he should have been able to contact the Consultant in a reasonable time-frame. Fingers crossed that they work for you, and please let us know.

[Clarrisa]

Thank you for sharing your experience in such detail. I live in the states & haven't felt my doctors & dietitians are up to speed on this subject matter either. I recently started reading a dated book on G.I. issues that says in the introduction: As the old adage goes, "If you want the very best medical care, find a doctor who has the same ailment as you have." I haven't had any luck to date with that yet. But come to think of it I have read an article about a medical student who discovered she had Celiac disease. I'll see it I can locate it again to find out her name & what she now practices. I wish you better luck this new year.

[Hidden in reply to Clarrisa]

Thank you for that. It's interesting that UK and US seem to struggle on many of the same things with regard coeliac and diet issues. I've found some of your resources quite good, and best resources I've found are amymyers.com and coeliac.org. It's the fact that we have to struggle for years as our doctors and clinicians don't know about gut bacteria and GI issues, how it can impact on wider health (e.g. arthritis), and only ever treat the symptoms of the core problem. Chinese medicine, functional practitioners, etc., are streets ahead and have been for decades/generations, yet mainstream medicine still treats people like a collection of unrelated spare parts and their personal stories bear no relevence to diagnosis.

[Hidden]

Good morning Hidden and poor you as you’ve been through a lot and it’s taken 15 years to know your body produces too much methane.I agree with Penel thats it’s hard to get a full diagnosis and with extra sensitive coeliac we have to work out if it’s allowed levels of gluten or a reaction to food first.

Have you explored IBS as Excess methane is a symptom of IBS so here’s a link:

thefunctionalgutclinic.com/...

Antibiotics kill all our gut bacteria and give me the runs big time and it’s why your gut is producing too much methane is the issue so I’d try and treat it with diet and think that you could benefit from keeping a food diary and look at foods that counteract methane.

I wish you well with this as I’ve read all your posts with interest and mega sympathy, my experience of the NHS is once we are diagnosed and in the system everything changes but I know lots of coeliac have ongoing gut issues.

And a very happy 2021 I hope that you find the answers that you’re looking for.

Jerry. 😊

[Hidden]

Hi Jerry. Thanks for replying. Interesting you supplied link to Functional Gut Clinic - they didmy test! They only do testing which is a shame as they have a lot of knowledge, but they did give me the names of private gastros to pick up on next stage. I don't have IBS or clear IBS symptoms thereof, but have clear gi pain and joint pain/nerve pain that frequently flare up, with osteoarthritis developing in quite a few key joints. Doing my own round-the-houses research there is a link between histamine that results from the methane production that causes the joint inflammation. The final 'ahah' moment was taking an antihistamine for something unrelated and realising it took the pain out of my joints and lessoned the GI pain. I've found loads of research papers on this, and the fact that for those with knee pain, anti-histamines can actually prevent further damage. SIBO needs robust antibiotic treatment, with the understanding that kills of good and bad bacteria. It's a bit like helicobacter bacteria (the one that causes ulcers) - it needs high-grade nuking. The methane producing one is even tougher to get rid of. Diet helps, but realistically will deprive the bacteria of their favourite foods and lesson symptoms, but doesn't get rid of the bacteria itself. I appreciate that antibiotics come with issues, but in this case even the good quality functional gastro advice is to take the pharmaceutical approach. Quite fed up with it all really, but feel I now have an answer but lack the blooming GP or Gastro to do the next stage, hence going private. Fed up having to educate over-paid medical arrogance. Yes, happy 2021 to you and all!! Thanks for your good advice again - always the font of good advice

🙂

[Narwhal10]

Hi Miss,I am really sorry and really hope you get your antibiotics soon. You know yourself best. I can relate to your story, suffered for years with my stomach. My iron and b12 had to hit rock bottom and I’ve had to go private too and lots of my own research. Yes nerve pain can be caused by nutritional deficiencies but doctors are generally clueless.

Wishing you all the best. 😊

[Hidden in reply to Narwhal10]

Thank you Narwhal10. Much appreciated. Did you ever get/find a definitive answer or was it basically diet adaption?

[Narwhal10]

Hi Mise,(Spelt your name right this time - sorry). I’ve limited knowledge of SIBO. I was told I had IBS for a couple of decades then finally someone listened properly (had lactose intolerance & fructose malabsorption) and a positive coeliac disease. Only been gluten free for a year but always been a faddy eater - salads in warmer months but a devil for pastry & bread in winter.

I totally understand about NHS - they are very good at acute - strokes, heart attacks anything chronic (long term) - no comment.

I’ve got a very limited diet as I still can’t eat fruit and lots of what used to be my favourite food - salmon, eggs, red peppers (long list) makes me nauseous. I’m waiting on h. Pylori test result which I paid for with private gastro. Then possibly endoscopy without gluten challenge (private).

You mention nerve, joint pain, low b12 and iron. Do you supplement ? Or do you have to wait for antibiotics to eradicate ? I’m currently reading about B1 (thiamine linked to pain) and B6 (makes neurotransmitters including histamine) - very interesting but don’t know if relevant to you. Sorry for giving such a long reply. I just don’t want people to suffer unnecessarily.

[Hidden in reply to Narwhal10]

Thanks for updating on that Narwhal10. Hpylori is a good one to test for as causes a lot of secondary issues. I was tested for that early in the game by GP and had antiobiotics. You seem to have taken responsibility and charge for your health and powered-up to take the initiative - this seems to be the only way forward with complex situations. The nerve pain/issues I get are direct result of foods reacting. Once the food issue settles, so does the nerve pain, but I am getting a lot of heart palpitations of late so putting that down to lack of iron/b vitamins. Again, made gastro and GP aware of this, and no one has offered to test for that! My plan is once I get the antibiotics, it's a very dedicated 12 months of health recovery whereby all sugar/'fermentable' carbohydrates ares out, various supplements taken (I have curcumin and other herbal supplements that are good for keeping bad bacteria at bay), low histamine diet (this seems to match up with the foods that currently trigger reaction), and fingers crossed.

[Narwhal10]

Sorry to hear it’s food that causes nerve pain. 😞 It sounds like you have a great plan and I really do hope it works for you. Heart palpitations aren’t fun. I recently had to see a neurologist (nhs) who put my palpitations/high heart rate down to anxiety. I can’t say on here what I thought of their opinion. 😊

[Hidden in reply to Narwhal10]

We need a separate thread just for all our collective expletives!

[Narwhal10 in reply to Hidden]

🤣😂 Or a complete website.

[Ali_r]

Can i just add my two penn'orth here. If anyone knows of a good rheumatologist who's knowledgeable about the links between RA, dysbiosis and SIBO please. I have all these issues (plus obesity and hypothyroidism) and i am sure they are all linked. It's over 9 years now since I knowingly ate gluten, and I can barely walk if i get glutened , but the weight is stubbornly refusing to go, despite thyroid and rybelsus treatment. So if anyone can recommend someone - private or NHS - i for one would appreciate it.