I am at a complete loss, how do I get my gut health back on track?

[Grownyourownway]

Sorry in advanced if some of this is tmi (I promise this is a genuine health concern of mine) but I’m getting myself in such an anxious state over my gut health that I no longer know what to do anymore.

My issues are daily, ongoing and wearing me down.

I have a bad tummy and weird stools most days. Have to go the moment I wake up. Loose but not fully diarrhoea (although that can sometimes strike at any time, out of the blue) but it’s kind of mud/peanut butter/toothpaste-like. Sometimes, like this morning I have to get to the loo quick yet other times I can sit there for ages trying to squeeze out this toothpaste poop it leaves me with a feeling of incomplete emptying.

I have such a horrible gut. I have suffered from IBS for 26 years and it is just getting worse. I no longer know what I can eat, I am scared to eat if I’m honest. I stick to low fodmap eating, I don’t eat any dairy and I only drink water but nothing helps. I even went gf for a year and saw no real difference in my symptoms.

I have tried all the medications recommended, Imodium just holds everything back (and often just constipates me) and the moment I stop taking it the floodgates open. Mebeverine or peppermint oil never help either. Probiotics make me worse. PPI’s make things worse (give me diarrhoea) and amitriptyline/nortriptyline left me feeling like a zombie.

Gut directed hypnotherapy is lovely but does nothing to help (I do listen every day though as it helps me to sleep). I walk my dog every day so get plenty of gentle exercise.

I also suffer from daily upper issues and experience lots of nausea, burping and gas. Literally, the whole of my digestive tract seems affected. I have had all the tests/procedures (2 colonoscopies, a gastroscope, biopsies for h pylori, coeliac disease etc), a bile acid scan and various stool tests all via my gastroenterologist and because these all come back as normal I feel she has just given up on me, she really doesn’t want to know anymore despite my issues getting worse. She basically implies that it’s all in my head (I have a telephone consultation with her tomorrow but I don’t hold up much hope of any help form her).

I can’t function properly, especially in the mornings and am often scared to leave the house because my symptoms are becoming increasingly unpredictable (I no longer enjoy a social life, I just endure my part time job for fear of having an accident and then come home). I am lucky that I only work part time but I am going to have to give up my job soon as I can not predict when my tummy will get upset. I have no idea how I am going to bring any money in without working. This is a constant source of stress which is obviously not helping. It affects my relationship with my dh and dc and my friends as I no longer want to go anywhere as my guts dominate everything.

I feel constantly exhausted and washed out. I also have constant pelvic discomfort from endometriosis and adenomyosis but it’ll be a full year before I get any surgery due to long waiting NHS waiting times. I feel a complete mess.

Can anyone offer up any advice, something I may not have thought of that could possibly help me? I am going crazy.

Have you tried working out what is causing it ? Eliminating everything except whole vegetables etc and working things back in ?
Surely it's something you are allergic to?
I've stop eating meat too tbh .

That’s is me 100%, it’s ruining my life as it’s becoming such a regular occurrence. I can’t go out for meals anymore and if I do go out then I’ll eat when a get back home to avoid triggering an ‘attack’ whilst out but people just don’t understand so it then becomes a huge issue with them making a fuss but they have such little understanding of how it feels, it’s miserable. I really feel for you.

I definitely feel there is some kind of underlying issues causing my gut problems. I have mentioned to my GP numerous times that I feel I may have at the very least joint hyper mobility and possibly EDS (I score high on the beighton scale when I try it from online sites), I have had issues since childhood, my mum had issues and my son has issues but it’s like talking to a brick wall.

I’ve looked into the elemental diet and right now, because of the fear of food I’ve developed it looks quite appealing to me but it’s so expensive isn’t it?

I will check out that link, thank you.

I feel for you Grownyourownway! My issues aren't as bad as yours but I know how limiting and miserable gut problems are.
Just wondering if you have tried an anti-inflammatory diet? I can tell you what works for me, but your gut is different so it may not help you. By the way, I have also recently become intolerant to eggs and chicken 🤢. Small quantities, occasionally, are OK, but eggs only if boiled for 40 minutes....
I don't tolerate gluten, dairy (not even goats milk), soya, eggs, chicken, and the really big baddies are yeast and sugar.
During tree pollen season I also avoid apples and need daily antihistamines.
Luckily, I enjoy cooking and baking as everything has to be prepared from scratch (lots of veg, pulses, rice, fish). Shop-bought gluten free bread makes me really bloated and unwell, probably because of the yeast and dozens of other ingredients so I bake my own GF soda bread.
Stress, of course, makes everything worse - especially when one worries about needing to go when one can't and it starts to spiral.
I hope you find an answer soon! 💐

I think I may have issues with my pelvic floor from years of unconsciously clenching that area for fear of soiling myself.
I am under a neuro gastroenterologist at the UCLH and they wanted me to do a defaecating procotogram but it would mean travelling to London on the train (a two hour journey) whilst taking laxatives and then more at the hospital, I just couldn’t go through with it, they said most patients don’t go through with it. If it was offered at my local hospital I may have managed it but I just couldn’t travel that far. I’ve had 2 colonoscopies and the laxative prep for that is not pleasant but at least I was at home for it.

MrsBobtonTrent I have kind of naturally fasted for many years simply because I feel to nauseated in the mornings to eat so I generally don’t eat until 11ish then stop around 5pm. I do this most days and have for years. I suppose the only bonus is that it keeps me slim!

It is something that I need to do although I’m not sure how I’d afford the prescription if I need Rifaximin. Apparently that alone is around £200 for a two week course.

I haven’t ever tried or been offered propranolol but I have read it can help with anxiety, I will add that to my list to ask my GP, thanks.

I do keep a food diary but just can not see a connection. I could eat a particular food one day and not be too bad but eat the same food the next week and feel awful. I have eliminated many foods which I feel are causing issues but just can not see which foods could be still contributing to it all.

I do use charcoal tablets when my gas it super bad, they do help somewhat.

Thank you notlyndasnell I think I need to adapt my diet to include an anti-inflammatory one I’ve read that it could help with my endometriosis. I will start looking into that.
I often wonder if an antihistamine might help, I should try. I do everything so tentatively these days for fear of triggering even worse symptoms.
I have no idea why I suddenly became intolerant to chicken and eggs but it does seem to be quite common for some reason.
Fish, rice and turkey I do seem to be ok with but I’m so unsure about anything else. I don’t consume any off the shelf gf products as so many make me feel bad and they seem to have lots of high fodmap ingredients and other nasties.

The whole stress/anxiety thing is such a vicious cycle. I am most definitely stressed due to family issues (terminally unwell parent) but then the more my guts play me up the more stressed I get about having an accident whilst out or at work etc so the more stressed and tense I feel, urgh!

@Grownyourownway You might well have EDS, it's really under diaganosed. Here's a picture of the current Diagnostic Criteria, you can run through this yourself to see what you think. And I'll add a link to the EDS Toolkit for GPs too, a lot of people seem to have more success with their GP by showing them this

The Elemental Diet seems to be more successful in treating SIBO, that's if you can tolerate the drinks (which I'm not sure I will!) but yeah, it's very expensive to buy yourself. Unfortunately though, if you do have SIBO then nothing else will solve your gut issues as it doesn't really just go away on its own, and ProBiotics made it worse (they feed the bad bacteria as well as your good)

https://gptoolkit.ehlers-danlos.org/

Edited to add: The link that I posted above for the private SIBO test seems to have come down in price since I used it... if anyone is buying one, check first with the company that they still test for 2 types (Hydrogen and Methane)

Thanks AriannasGuitarCase

notlyndasnell would you be willing to share your recipe for the gf soda bread?

I’ve tried several gf bread recipes using the Dove’s Farm gf flour but they have been disastrous. I’ve had success with flatbreads but that’s about it.

Yesterday I made a lovely looking bread (look how tasty it looked), I got the recipe off Tik Tok. It looked so lovely but the outer crust was as tough as old boots and the middle was as chewy as bubble gum! Maybe I’m using the wrong flour? The guy on TT said he only uses a specific Italian gf flour he gets off Amazon.

Maybe consult an Ayurvedic practitioner. They believe that you have to treat the whole digestive tract not just the area you are experiencing issues with. So it all starts with the nose and mouth. They also believe in herbs for healing and that some foods should never be eaten together.

My SIL had brilliant success with reflexology.

You might not be eating enough fibre? I take a teaspoon of chia seeds in water every day and in the past used physillium husks to treat leaky gut which worked wonderfully.
If food isn't having an effect then it might not be food related.

Finally maybe take a look at your gut microbiome. Zoe is expensive but you can focus on getting in 30 different plant based foods a week, reducing upfs and including fermented foods which should make a difference.

Might be helpful to know what you are actually eating. Are you restrictng your diet so much now that your body isn't getting the nutrients it needs?

Sadly, I do t have the funds to try any alternatives to the NHS.

I have definitely cocked up my gut microbiome from being on such a restrictive diet for years. My 50th birthday present to myself last year was a fully comprehensive stool analysis and it did show dysbiosis.

I do believe that my restrictive diet has most probably contributed to nutritional deficiencies yet my GP and dietician aren’t interested. Dietician just suggests a multivitamin. I’ve had full bloods take from my GP and several, including my ferritin (I was iron deficient with levels of just 3 for a long time until I had an infusion last year), is still fairly low at 32 and my b12 is on the low side of normal (280) but because they are all within the normal range, albeit many are on the low side (including vitamin d), GP isn’t interested. I take vit d and a multivitamin but have not seen any improvements.

So the GP wouldn’t prescribe? I know Sibo tests can be unreliable as well. There was a good Zoe podcast on Sibo recently.
I took the h pylori treatment which was horrid in terms of the antibiotics but I’ll try anything to see if it works.

@Grownyourownway I had a SIBO test on the NHS
I know your bile acid scan was negative but would they consider a trial of cholestyramine / colesevalem?
Both questions to ask I guess! Xx

No, she said it was too expensive.
I did see a private gastroenterologist last year, he said he could offer me the test for £150 and if it was positive he could prescribe 2 weeks if rifaximin for a £200!

I’m on a uk sibo support group and it looks as though it’s a bit of a postcode lottery for sibo with some lucky enough to be tested and treated on the NHS and others don’t have so much luck.

I had my telephone consultation with my gastro today. She is going to request an upper mri for me and prescribe me some bile acid salts to trial. She says she doesn’t normally prescribe them to patients unless they’ve tested positive for bile acid malabsorption but she knows I’m getting to the end of my rope with it all.

She also saw on screen my gynae notes regarding my recent endometriosis diagnosis and says she has lots of endo patients who suffer from gut issues so maybe it’s the endometriosis causing all
of this 🤷‍♀️

Wow, that looks really nice! Shame it was so disappointing to eat.
My attempts at baking GF soda bread are not always successful 🙄
I have concluded that when trying to bake bread without gluten or yeast the best I will ever achieve is a bread-like substance. And never white bread - just doesn't work. I've had some success with these:
https://kidneycareuk.org/get-support/healthy-diet-support/kidney-kitchen/recipe-index/soda-bread-rolls/

I use GF Schär Rustico flour and GF white bread flour; sometimes I add a bit of chickpea flour and oat flour. Instead of dairy yogurt I use either DF coconut yogurt or rice milk with a squirt of apple cider vinegar and olive oil. If you tolerate psyllium husk they are a godsend - help bind the dough. Apparently very good for IBS, too.
Rolls work better than bread as you avoid the rock-hard crust and sticky middle.
Happy baking!

What kind of eggs and chicken are you eating?

I have similar gut issues although not as severe by the sounds of it.

I am dairy free but by accident learned last summer that I could tolerate butter if it was made from exclusively grass-fed cows. That made me wonder whether it wasn't so much the milk I was intolerant of as whatever was in the food the cows were being fed. When I looked into cattle cake I realised it had a lot of soya in it, which is a huge no for my gut.

Just wondered if maybe the sudden intolerance to chicken and eggs is because they are being fed something different that's setting you off, not chicken and eggs per se?

Watching this thread with interest because I know how tedious and debilitating this condition can be.

Thank you, I’ll try experimenting with different gf flours. Tbh, I’ve only ever used the Dove’s Farm ones and never had much success with anything other than the flatbreads, maybe it’s the flour and not my crap baking skills!?
I will also start with rolls instead, fingers crossed.

i have similar problems and haven’t found a solution, but I did have a course of pelvic floor physiotherapy that has made a difference to the pain levels.
i can tell the pain is partly caused by my pelvic floor going into spasm and I can now breathe/massage it out (sounds weirder than it is - it’s just another muscle!)
I paid privately, but would be worth speaking to your endo team if they’d refer. Good luck.

I really do think this is something that I need to look into. Was it expensive?

I did wonder myself but I get it from all kinds of chicken including organic and even my uncle’s chickens eggs but I still react and I’m worse with cold, next day chicken for some weird reason.

But my Nan was like that with chicken and eggs and so too is my dad. My dd16 was really off a few weeks after eating chicken. Must be some weird family trait.

Oh dear OP, sounds awful, poor you!

You sound like you need Dr House!!

I had endo for many years and the NHS treated it as gastro. Eventually I saw a consultant Gastroenterologist who pointed me towards Gynaecology...

Do you regularly ring the consultant's sec to see if you can get moved up the surgery list as your symptoms are worsening? Worth a try.

I now actually do have Gastro issues (gluten intolerance).

I've found a couple of useful threads on here about gluten free food and a poster trying to diagnose her own issues so I'll link them if I can.

I found this book a great read too:
www.amazon.co.uk/Gut-revised-expanded-Giulia-Enders/dp/1911344773/ref=asc_df_1911344773/?tag=googshopuk-21&linkCode=df0&hvadid=310970710731&hvpos=&hvnetw=g&hvrand=1733927450987520725&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9044976&hvtargid=pla-417335656978&psc=1&mcid=e5542160f4f134678c3bbe3161ec498e&th=1&psc=1