I’ve posted this on the Lupus forum as I have UCTD with Scleroderma symptoms but thought may be appropriate here too. I have posted before about SIBO and how I’ve recently been trying to deal with it. After having 2 three week courses of antibiotics as Professor Denton suggested, and some antibiotics for UTI’s which I seem to get alongside, I am having more days without symptoms and the attacks are shorter now. However, I am still not putting on lost weight and it is difficult when you are avoiding sugar and certain grains. I must admit I don’t know about anyone else but my head is spinning with the various diets for SIBO. It seems that only eating sourdough and giving up sugar is helping though. I am consider seeing a Functional Medicine Practitioner as they seem to get good results for SIBO and are not averse to taking antibiotics and they work out a whole treatment plan through diet and digestive enzymes etc. ( I personally do not know where to start with those!). I’ve found one fairly close who works alongside a GP and several London hospitals but it’s not cheap. As part of the package you have a 90 minute consultation with their resident GP and 90 minutes with the functional person. They then work out a plan. I think, bearing in mind it might give me the confidence to book holidays, make commitments etc again it might be worth it. My question is has anyone on this forum consulted a Functional Practitioner and if so was it helpful?
The other question I have is as the NHS will not approve Rifaximine we are advised to take alternative three week courses of Ciprofloxacin and Metronidazole which I have done but my GP has told me he will no longer prescribe Ciprofloxacin for me anymore as it causes nervous system and reflex problems. Has anyone had problems too?
Sorry this is a bit long.
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Halfwayuphill
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Hello, it can be a minefield when changing up a diet. Have you heard of low fodmap? There's an app that's really helpful. I think made by food maestro and possibly Kings College? I've found it a big help. I've also read some things by a lady called Maeve Madden. She has suffered with numerous things including SIBO. Hope you feel well soon.
Thank you for the info re Kings College etc. I know about the FODMAP diet but will look at the app. The problem is you can’t really go on it for too long as it’s impossible to maintain your weight. I’m also not very good at knowing what foods are upsetting me when you reintroduce them either. It’s difficult to do all this with a family and going out etc. I will look up Maeve Madden who I've not heard of too.
Many thanks and hope you are doing well with this problem
It sounds like your problem with transit and this problem might be worse than mine, I’m sorry you are having to deal with this. I wondered which hospital you go to? I haven’t heard of anyone in the uk getting Rifaximin except for TB. Apparently it’s more expensive than the alternatives which is frustrating for SIBO sufferers in the UK as all the research has been on the benefits of this drug. I will certainly let everyone know how I get on if i see a functional doctor and it’s benificial. I have already seen a nutritionist but wasn’t so sure about her. She didn't seem to know much about SIBO so treated me for dirviticular disease (which I have along with a prolapse). She did suggest no whole grains contrary to what doctors recommend which has helped me a lot. You get all your roughage from extra veg and some fruits. I also have prunes in the morning, just 1-3 depending what I need. Weirdly this has helped my slow transit. I eat a lot of basmati rice and white sourdough although I think the latter is not as good for this as giving up bread for SIBO but I’m already thin so worried about weight loss.
I live near Dorking but go to the Royal Free. I’m seeing Professor Denton’s team next week so will see what they say about the antibiotics. I am better since the last course but not sure if it’s partly the other antibiotics I’ve had for UTI’s too. I developed urine retention, a prolapse, dirviticular Disease and SIBO all within space of few weeks. This was after doing too much and a period of prolonged stress. Weight loss I’ve had for a while and slow transit but not these symptoms. Professor Denton thinks it’s all related to Scleroderma symptoms. Mostly I feel ill now when my digestion is moving rather than for days on end which I’m grateful for. I did go on a psychological spiral I think after all these symptoms started which I don’t think helped. I think I’m more positive now. I will let you know if I discover things help although one of the annoying things about this SIBO is everyone is different. My attacks start with a Raynauds attack which is weird. It sounds like you have good treatment at QE.
I’m sure a lot of people believe this and I think it depends what experiences you have and it’s not cut and dry as with most alternative medicine. However I am principally interested in hearing from those who have had any experiences of it good or bad with the same condition before I invest in it timewise and financially. Mainstream hospitals in the US and a number of GP’s are using it here - admittedly privately because a ten minute consultation doesn’t come near it. Let’s face it SIBO and leaky gut we’re considered not to exist not so long ago by the mainstream medical profession. I am very lucky in going to the Royal Free Scleroderma clinic who do ‘think outside the box’. Without them I wouldn’t have thought of SIBO. Certainly my GP practice have never heard of it and not that happy with the antibiotics they recommend. However along side that, if finding changing something in my diet or just analysing my reactions to a symptom with the help of a physician improve my health I’m willing to try it. Even medical doctors now talk about the gut brain connection. I had 2 consultations with a nutritionist last year. I was put off by her also using some sort of magnet on your muscles for allergies which did seem like hooey to me! However she did help my diet. She didn’t know a lot about SIBO and mainly treated me for her experience of dirviticular disease but one thing she did recommend has helped me. Giving up whole foods and avoiding certain carbohydrates has surprisingly helped my slow transit and some symptoms. I think I would be very sceptical about any of these practitioners who claimed to cure you especially if you have an autoimmune problem, but haven’t come across this at all except from some individuals mostly in the states who cured themselves and wrote books about it! In the clinic I am thinking of going to half the consultations are with a GP who works at the gastroenterology departments of some London hospitals.
Thanks though - I understand this does concern some people.
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