Any tips on finding a good one? Due to the lack of help via GP, I am doing the low FODMAP diet by myself. Amazingly, GP won't recommend names.
But I do need nutritional guidance from someone with qualifications and this will have to be self-funded.
I am preparing to plough through the website of the British Dietetic Association for experts, but any positive tips from the community would be very welcome.
Thank you.
I did low Fodmap elimination and re-introduction phase myself too. I did the elimination for 8 weeks then gradually started re-introduction. That was ages ago...2020. Since then I have managed to extend my diet to 17 vegetables, a few protein sources, and some safe carbs, plus some treats It's still a bit of a see-saw act, as my gut can do its own thing sometimes, so based on my symptoms or lack of, the previous day, plus bowel movement that morning and how I'm feeling, I adjust my diet to suit. Sometimes I need more fibre, sometimes less. Sometimes fruit, sometimes not.
But it's different for each person, so I think you have to find your own way.
I learned not to get too hung up on what we are told and advised to do, but only do what suited my body.
I also got a good multivitamin/mineral tablet to take daily, and a B complex daily. I took liposomal vitamin C for a while and a D3. But I now seem to get enough vit. C from my food I think.
I really researched like I was studying for a course qualification. I set my mind to it and researched nutrition etc. I got a special notebook for notes which I still refer to. I don't regret going it alone.
I would see another GP, they should refer you to nhs nutritionist. That's what I did and they walked me through fodmap, with after appointments to review.
Thanks. Did you find the diet helpful?I think I'm a bit rundown from not eating enough (fear of flare-ups) and the isolation that IBS brings. So having to fight for help is exhausting, although one knows that it often the case in this country.
I did tell my GP to make a note that I felt unsupported in this matter but that was that.
When I feel stronger, I will go back and ask for someone else.
hi yes i did find the diet helpful, challenging in the elimination phase, then the trepidation of introducing things one at a time to find your triggers. So it is not a quick process. I am greatly improved, still have occasional bad days, no where near how I was before. Good luck
Hi
I have found the Guthealth Clinic vet good. They do both virtual as well as face to face.
They will also do a thorough assessment of you first before you embark on any diet/food map etc.
Great to have a personal recommendation. Thank you. I will definitely consider them. It is clearly going to be an expensive condition for which to find help wherever one goes.But I suppose I can rationalise the expense because, apart from over-priced gluten-free products, my spending on food is minimal these days because I eat so little and never eat out!
Sunny222
I totally understand. I’ve been afraid to update this site with updates from my side or any recommendations, as due to the lack of support from GP’s & the isolation I have had to go down the private route. I am still on my journey but believe I have done less damage than trying to work this out myself. It is an absolutely heartbreaking fact of the lack of support from GP’s and generally the NHS for GI conditions. Other conditions there is more support but not this one. Also if you want to go private you have to select the right private. I wasted 6 months in the wrong private place that probably did a lot more damage that I am still trying to resolve. (Prescribed laxatives & suppositories which made the problem worse). How I ended up where I am. A family member recommended that I push my GP to refer me to St Mark’s (a top NHS bowel hospital in the country). I found out that some of their consultants were working in the private sector. (That’s the other thing, a lot of NHS consultants are in the private sector where they can offer more than the NHS) . I then managed to switch to private until my NHS appt caught up. It took 5 months for my NHS gastro appointment to come through where I was praised for how much hard work I had done for getting where I am. She was great! One of the best but clearly her hands are tied. I have been referred to pelvic floor therapist on the NHS but this will take another 5 months.
Effectively what I am trying to say is that I pushed for NHS referral to good bowel hospital, then looked to see if any consultants worked privately. From there was referred in-house to the Gut clinic & other specialist. It has been financially draining and I am at the point where I have run out of money but think it has been worth it. Longer you are in this condition without support the longer it takes to resolve or at least find some sort of way of living. If you are able to manage by yourself that’s brilliant but if you recognise you need support then you will have to look for it. From my experience just choose carefully what you invest in.
Thanks for sharing that really informative account of your achievements through a tough process (that's what they are!)
I agree. Some people are comfortable managing by themselves. I find it wearying working a vacuum because there's a load of nonsense talked and I constantly have to assess whether I trust the source of the information. That is exhausting when one is already rundown.That's why, like you, I like to "shadow" the NHS and find out whether the private practitioners have NHS experience.Also having the condition is already isolating. No sociable meals out, having to cancel or avoid meeting up because of pain. I definitely feel out of the mainstream.
My aim is to manage the symptoms first through the low FODMAP exclusion and reintroduction process, and find a professional to help.
Then I will look at therapies to manage stress. My best friend is convinced that is the root cause and I think she's right. I have a lot held inside - not helped by the struggle finding support for IBS!
I know that all of this help will have to paid for. But, as I say, not going out to eat and saving on clothes and make-up, because one feels so worn down, means I don't spend as much as 6 months ago.
I hope your journey continues in a positive direction and thank you for all those great thoughts.
I am currently looking for a dietician too.. i made the mistake of previously going to see a nutrionist (at the time i wasn't sure what the difference was), but I got fobbed off with a load of supplments and expensive tests that I now know are a load of rubbish. If you find a dietician that is asking you to pay for a food intolerance blood test.. run!
Yes. I can believe it! Luckily, I had come across the fact that "nutritionists" can be dodgy - so have concentrated on dietitians.For a good start if you want a helpful framework for treating IBS, I can recommend some excellent video webinars by a group of UK NHS dietitians. Just Google "Patient Webinars IBS" and see what you think.
If only I could be those women's patient - but I live in the wrong part of the country!
Thanks. I have the Monash app and written guidance about the diet from an earlier time I did it. That time I had access to a dietitian. I find the diet OK to follow. My concern is nutrition because I am eating such small amounts.
I did the fodmap diet by myself. Even if you had a dietitian, you would have to do this. You can do it. It is a process of starting with Fodmap diet and then finding out which foods you are intolerant to by adding and omitting foods. Best of luck.
If you're on instagram there are a few good ones on there that are worth following.. ibs.dietitian and the.ibsdietitian
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Had my endoscopy and they couldn’t find anything 🤔
