After 25 years of this (and things getting worse), I am literally at the end of my tether.
Whilst I am so very grateful to the NHS for all of the tests I have had, I am still no closer to having this under control.
I have tried everything:- I am low fodmap whilst avoiding all of my known trigger foods (been low fodmap for far too long as scared of high fodmap foods and food in general!), I am gluten/wheat free, dairy free for 20 years, drink only water, take medication when needed, have tried endless supplements and alternatives for the IBS-d I have but still I have issues every day.
I exercise, listen to gut directed hynoptherapy, do stretching/yoga every day.
I have tried live yogurt, kefir, probiotics etc but they made things worse.
I am 50 now (perimenopause is definitely making things worse) and don’t wish to waste more years feeling like 💩. I think the time has come to try a nutritionist or, ideally, a naturopath but where do I even go for this? I could pluck someone out from the internet but have no idea how reputable they are and none are cheap.
Has anyone had any success treating their issues with someone outside of the conventional medicine route?
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rustydog
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Even though Homeopathy makes no sense scientifically, I have found some subtle help from it. I tried experimenting on my own, and actually made myself worse, even though I was convinced what I tried would help my symptoms. So I booked in with a professional practitioner, and have been seeing her monthly for quite a while now.
All I can say is, my flare ups didn't go away. There was no cure for my IBS. But, what I did find is that flare ups became more rare, and I did have extended periods (on one occasion two months or more), with literally no IBS symptoms at all.
With hindsight I see that any change was very slow and subtle, but I can see fro my diary entries that I am a lot more stable now than I was 2 years ago.
I have been able to reintroduce some foods that I had to strictly stay away from, like brown rice, beetroot, celery, olives, some salad, peanut butter, walnuts, cashews and carrots. But with some foods (such as fruits, tomatoes, onions, garlic, leeks and lots more) I have not made a lot of headway, though keep trying in tiny quantities.
So I am not pushing homeopathy because we are all different and respond to different things, and that might be useless and a waste of money for somebody else.
But some alternative things can work well or at least help. It depends what, and it depends who we are, as well as the skill of the practitioner.
Please please be aware that nutritionist are trained to advise on healthy diet, they are NOT trained to treat the sick eg diabetes, coeliac ect ect for that you need a dietician, especially if you go private, some are just out to make money and sell you supplements and even drugs. They take advantage of desperate people, I would do anything to get better.She sold me herbal antibiotics cos Doc wouldn't give the.. then said I have to get worse before I get better!! I lost 2 and hf stone and she almost killed me. My Doc had her struck off, but sadly this is not an unusual case.
I know, it’s so difficult knowing who you can trust but there are some good ones out there, it’s just knowing where they are.
I was stung out of £250, two years ago. Was told by a nutritionist all my gut woes would be cured within a month if I ate two hard boiled eggs for breakfast (even though I had told her I’m intolerant to eggs) and 10 veg a day. I explained that 10 veg would have my on the loo all day but she insisted it would help, alongside the £150 worth of supplements she suggested (which I couldn’t afford). Needless to say (as I know my own 50 year old body!) I did indeed have a worsening of my issues. Funny enough, I didn’t bother going back for the follow up!
The issue for me is that I’ve seen 2 NHS dieticians and currently under the care of another and they are not that helpful, sadly. The latest just tells me to eat a tablespoon of my trigger foods and eventually I’ll be able to tolerate them, no other advice. It’s not helping and my symptoms are getting worse week by week.
My gastro just tells me that I’ve got to learn to live with my symptoms and to take imodium all the time (which also doesn’t help), easy for her to say but I only work 8 hours per week due to my symptoms, my life is greatly restricted by my poorly digestive system.
Unfortunately these people don't have the answers. They are not medically trained. I scanned the whole market in the UK - looking at every possible source, checked out all their qualifications, did background checks on them. One of them was a struck off doctor, another wanted to work on my past lives with me as part of the process and started harassing me to start her programme.
Much of what they are practicing is not clinically proven (i.e. the rigour the NHS has to go through), but based on spurious scientific studies which are inconclusive. Unfortunately, it's a way of making a fast buck out of desperate people.
I picked 2 of the 'best' and honestly they made me severely ill. I found holes in much of what they were telling me and quite frankly they weren't particularly bright. Some of the courses they go on require only basic English and maths. If my doctor had that level of training, I would be extremely worried.
Both the ones I dealt with were doing the 'job' as a lifestyle choice. A way to make lots of money whilst working their own hours or taking loads of expensive holidays. One of them spent much of the session I was paying for telling me about her fantastic cruise. If I asked for further information about something, they'd say they didn't have the time to look into it (due to child care responsibilities, either their own or their grandchildren). Much of the information I was given were handouts available on the internet. If I asked for guidance about the standard information , they didn't have a clue.
Much of what we talked about was supplements, when I wanted to know what I could eat, they'd go back to the handouts again. Overall, once you add up the sessions, they cost a fortune. With the supplements on top of that, it can make you bankrupt (e.g. a bottle of x or y might cost £70). Plus nothing they did worked. The regime they'd put me on made me lose a huge amount of weight and I lost all confidence in myself.
When I became extremely ill, I almost became dependent on one of them, I was that worn down. When I contacted her to say how ill I'd become, she ghosted my email, never to be heard from again. By this time the NHS were proving their theories completely wrong (I didn't have SIBO but something entirely different). The therapist realised she'd been found out. It took all of my strength to get myself out of the situation. I started doing my own research since I felt I couldn't rely on anyone else.
These people should be banned or at least regulated.
I am at a complete loss though. I know that I am grasping at straws here but don’t know where to turn to gain better health. I have tried everything myself and still no better (worse infact).
I really should know better I suppose as I was stung out of £250, two years ago. This nutritionist’s advice was not helpful and she spoke over me throughout the whole of our Zoom consultation, never allowed me any time to explain myself and her advise was ridiculously basic and did not help me at all (actually made me worse).
The issue for me is that I’ve seen 2 NHS dieticians and currently under the care of another and they are not that helpful, sadly.
My gastro just tells me that I’ve got to learn to live with my symptoms and to take imodium all the time (which also doesn’t help). It’s easy for someone to tell you to learn to live with a condition which has controlled the last 25 years of your life, has prevented you having the career you had carved out for yourself and narrows your life down to almost housebound levels, it’s no wonder we fall victim to charlatans.
There are some really great naturopathic practioners out there surely?
The thing that is really required in these cases is the equivalent of Dr Michael Mosley's The Diagnosis Detectives TV program. They have a panel of medical experts to solve difficult medical cases. They'll probably have more shows in future, for which they will need people to 'detect'.
I did actually try to get an appointment with the dietician who was on Know your S**t but they have never replied to me despite 3 emails which was disappointing.
That's such a shame and quite rude of them. Unfortunately, alongside many other conditions individuals are left to their own devices and having to do their own research to find out what helps them.
Have you thought about the water? I can’t tolerate tap water and certain bottled waters, I found shepley springs water is ok for me, as for tap water the water companies add chemicals into it to kill off the bugs but some people like me struggle with it. I was on bottled water for 10 years then earlier this year I was talking to our water softener company and they recommended having a filter fitted and a dedicated tap fitted as the filter would remove all the chemicals that the water company add, as soon as it was fitted he filled two glasses one with filtered water one with normal tap water when stood side by side the normal tap water looked cloudy while the filtered water was clear.
I drink bottled water from glass bottles. Been doing that for a few years tbh as our water tastes of chlorine. I’m looking into getting a water filter as it’s costing a lot (this IBS has cost me a small fortune!)
My filter cost £100, as for bottled water it can depend where it is from and what it has been filtered through, some are filtered through rock,sand chalk clay, some could come from a high mineral area, try different spring waters, some bottled water is just tap water that has been bottled, you need to use spring water and try different ones
Hi rustydog. You have my sympathy. I have tried a Naturopath who was also an Osteopath. I found the diet difficult but really helpful. This was when I was in my late 30's with chronic gut problems and PMT and really bad periods. I am now in my late 60's and have had to change my diet again as post menopause my gut has been causing pain, cramps , lack of sleep. After battling with NHS, I found out a few years ago that I had pernicious anaemia, very low Vitamin D. My sleeping was impaired and my bowel and bladder problems and incontinence got a lot worse. While I eventually, after a lot of battling and being dismissed, found some answers and treatment (B12 injections and Vitamin supplements); my experience is that the NHS are really not helpful and as a woman, you can easily be written off as neurotic. What has helped has been, my partner believing in me, the can't wait card.Medically I found Acupuncture to be really good. (You need a good acupuncturist) also Tai Chi and swimming as gentle exercise with low impact. For bladder incontinence, the Alexander technique helps to strengthen the pelvic floor with simple exercises, Through trial and error, I have found that Tomatoes and Wheat have a bad effect on me and they are in many foods and ones you would not expect. It is easy to give up and just not try to control it. Support from friends family and partners really helps. I haven't joined a support group but I think this would be beneficial, especially when you are exhausted furious sad and depressed. Take care xxx
I have felt, for years, that I’m listed as a neurotic female, they all seem to think every ailment I have is caused by anxiety. I would love to try acupuncture, it’s something I’ve been thinking about for a while.
My b12 is classed as ‘normal’ according to my GP and the NICE guidelines but it’s still on the low side of normal so I’m not sure if that may have anything to do with my issues? My last reading, a few months ago was 280 and the range was 197-771 so that’s still on the low side but all ok according to my GP, no action required!
In brief, YES I had some success with a UK nutritionist but sadly she has now retired so I can't recommend.
Like you, sadly I and my immediate family members have had bad experiences with NHS dieticians and/or NHS medics. And I'm also aware of financial incentives which would stop me personally considering dieticians.
I note that nutritionists have had a bad press on this thread from some who have had bad experiences with them. This confirms there are both good and bad practitioners in all disciplines including medics, dieticians and nutritionists.
The best a patient can do is research backgrounds, websites and, in particular, testimonials. Sadly that's often more difficult with NHS practitioners in my experience. For Nutritional Therapists, I would consider only qualified ones who are BANT members (yes, they ARE regulated and use nutrition & lifestyle to protect against and aid recovery from illness!) and registered with CNHC and ANP.
See links below.
I can also send you link options for qualified NTs from which to choose, if you wish.
Rustydog you sound a bit like my journey. IBS most of my life, migraines for 20 years and now a neurological condition.The last post summed it up well.
I saw a nutritional therapist over 3 years ago. She guided me through private tests and my digestive health has never been better. Do lots of research, contact BANT and find a NT that has knowledge and experience in the area you need. It doesn't come cheap. Most will offer a free 15 min consultation . But you must be patient. There will not be overnight results. It took over2 years for my gut to calm down so motivation is needed.
My experience of the NHS in this area is they are sadly lacking and overlook symptoms, cannot do joined up thinking etc. And all the time your quality of life is poor. Spend some time looking at the bigger picture, invest in your health, you deserve it!
I currently use a naturopath/herbalist who is very knowledgeable. If you want to pm me I'll let you have her details. No guarantees but it might be worth a free introductory phone call ?
Hi, I have had some success under the guidance of a Nutritionist whose details are on a website called evienutrition based in Buckinghamshire. I only ever saw her on Zoom.
Although my symptoms (ibs-d and sometimes ibs-c)are not perfect once I started to follow her advice I had significant improvements. She is not cheap.
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