Everything is upsetting my stomach

[ISeeTrees]

I am in the process of medical treatment but it's moving slowly, and day to day I'm really struggling.
About 12 months ago I started to notice bread-y things weren't really agreeing with me. I cut gluten out of my diet pretty much completely and felt much, much better.
But in the last couple of weeks, since Christmas really, it seems everything is upsetting my stomach- even though I'm still careful to avoid gluten- in various ways, constipation, diarrhea, cramps like period pains, indigestion, heartburn, nausea. It's waking me through the night and I'm getting worried about eating anything really.
I'm seriously considering just living on chicken rice and broccoli at this stage. Wwyd? Does anyone have any ideas?

I think you're in for a diagnosis of IBS, OP, though I don't personally believe that's a diagnosis - more of a 'giving up and won't investigate further'.

I have a lot of your symptoms but also have the bigger problem of POTS (which you are unlikely to have based on digestive symptoms alone) and was told this is probably resulting from that. I saw countless gastro specialists over the years before my diagnosis who told me I had reflux, motility/stomach emptying issues, IBS, chronic constipation...Anyway...I have a great new specialist now so hopefully I'll finally get somewhere.

IBD (chrohn's, UC) could be at play if gluten is an issue but I don't tolerate gluten well and I don't have those so don't panic.

Have you tried anything for any of the symptoms? Buscopan/mebeverine for cramps and diarrhea? Silica? Movicol/glycerin suppositories/fybogel for the constipation? My colorectal surgeon swears by daily flaxseed but I keep forgetting there's some in the cupboard. PPIs like lanzoprazole or cimetidine/ranitadine for the acid?

I use glycerin suppositories almost every day but am about to start prucalopride for the chronic constipation (a motility activator rather than a laxative). That's after 30+ years of it though. I take a few Movicol when things get really backed up.

For reflux at night, the best thing I found was Gaviscon Advance just before bed. It was recommended by an ENT and it really helps as it puts a sort of 'float' on top of your stomach contents. PPIs don't help me. I bought one of those wedges but struggle to get comfortable enough to sleep on it.

I feel sick about 90% off my waking life but not often to the point that I vomit. There are medications that can help (domperidone/stemetil/cyclizine/ondansetron/promethezine) but they don't often like to prescribe them. Stemetil you can buy OTC for migraine-related sickness, promethezine is OTC phenergen and cyclizine can be gotten from a pharmacist, if I remember correctly. Not that I'm suggesting you take any of these - I just know how much it can impact daily life.

I chew a lot of Gaviscon dual action tablets but they only take the edge off because I have a lot of acid. Ginger capsules sometimes help me.

I hope you get sorted. It's bloody miserable.

Thanks so much for such a comprehensive reply @StrapOnYourHeroHair I really appreciate you taking the time out.

I was trying to be relatively concise in my OP so stuck to the gastric symptoms that are bothering me, but if it's relevant I'm struggling generally with fatigue, low mood, aches in my muscles and joints, back and neck pain in particular, also prone to migraines and insomnia.

I basically live on Lactulose. I can't generally 'go' without it, but I'm not keen on the reliance I seem to have on it. Also chomp Rennie's/gaviscon like they're sweets! Ranitidine has been taken off the shelves too- something about it being carcinogenic I think. Flaxseed I can definitely try, and maybe some Buscopan for the cramps. It seems ridiculous to keep treating all the symptoms without knowing the cause, but I'm so uncomfortable so much of the time, I don't sleep properly and my work is starting to suffer.

I'm the same as you in terms of feeling sick most of the time, especially after braving some food, but it's rare that I actually vomit. Last time was just before I cut gluten out of my diet. I did try to get some cyclizine from the pharmacist but apparently it's not available OTC anymore and we all know how hard it is to get a Dr appointment these days, especially if you're not at deaths door.

Best of luck with the new specialist, I hope you find some relief!

Ah I feel you - I all those other problems and a few more. Do you have any tachycardia on standing and/or fainting/dizziness?

Because you have other issues, it really could be part of something ‘bigger’, something overarching. (Or it could be completely coincidental, of course.) But it often takes a long time to get to the bottom of it when it is.

Feeling like shit for a long time definitely wears you down. I know for me the physical stuff causes the mental stuff and not the other way around.

I wouldn’t worry about the lactulose. It’s just a stool softener.

Fingers crossed you’ll get some answers. You’re not alone. 👊🏻

It's really taking its toll on me at the moment, I regret taking for granted just eating normal food and not having to think about toilet issues!

Yes, if tachycardia is like palpitations? I get that, I had it this afternoon which prompted writing this thread. My balance is also appalling, and seems to be what my consultant is most concerned about at the moment. I couldn't walk in a straight line putting one foot directly in front of the other without stumbling. It took me by surprise, I thought I was just tired/clumsy!

I feel like the medical staff I've seen so far have just looked at individual issues, whereas my gut feeling (pardon the pun!) is that at least some of it is all connected.

Thanks again, I feel slightly less alone!

Just bumping for the evening folk, as I crawl to bed with a hot water bottle again

You're me OP. I've gone gluten free and dairy free. I'm still having regular unexpected urgent diarrhoea and could easily power three wind farms. I have a very bland diet which mostly consists of rice crispies and oat milk with a slice of cold meat here and a banana here and there. I don't drink, i don't have any caffeine, no tea or coffee, no chocolate, no sweets, there's very little more I can feasibly give up.
I've had two stool samples which were clear. I have no idea what to do now. Why are people mentioning tachycardia??

Oh gosh @AliciaInWonderland that sounds really difficult, I thought giving up gluten was challenging enough! I can't imagine what could be setting you off.

I've wondered about pro/prebiotics but it seems very complicated, I don't think the brain fog is helping, but my guts clearly aren't happy.

I think the tachycardia was mentioned as it's a symptom of POTS- though I haven't looked into it properly yet. I felt off last week with palpitations and when I took my blood pressure it was normal but my pulse was 95bpm rather than the average 60s. I wish I knew what was going on!

if it's more the lower end of digestion have a loook at sphyncter of oddii (sp?) dysfunction.
it's related to gallbladder/bile duct issues and can cause all sorts of funny things.

Hi OP,
Has low B12 been investigated?
www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

I think low B12 itself can be hard to diagnose sometimes due to misleading markers in the blood or something like that but it's definitely worth looking into from your symptoms and the NHS symptoms list.

Hi after having my last child three years ago I started having issues with bread lots of pain mostly in my legs. I had a barrage of blood tests and my inflammatory markers were up not enough for referral thinking was I may have arthritis. Coeliac test for reasons unknown to me wasn't completed during the blood tests.

I gave gluten up felt better initially lost a stone in weight. But since then I've gained 2 stone and have issues with many bowel movements per day. I've had stool samples for cancer for bowel inflammation clear I've had numerous blood tests mostly clear apart from elevated liver enzymes. Doctor was not concerned about that as I wasn't yellow 😵‍💫.

My diagnosis is ibs also I'm interested in this pots stuff as in my last pregnancy I developed sinus tachycardia & pots was mentioned I have lots of issues with feeling dizzy and when my bowels are really bad shaky hands and legs. I'm 41 and doctors mentioned peri menopause could also be the cause but blood test came back it wasn't that either.

It's awful isn't it

Hi @Winter2020 I had a load of blood tests just before Christmas and I'm pretty sure this included b12. I asked for my results and was told everything was within range.. I asked for a printout so I could check for myself but unfortunately there was a printing error so I only got a copy of certain results- b12 wasn't one of them. It's worth looking into again though, and I've actually got to go in for more bloods so will make sure I get a proper copy of these results! Also going to look at b12 deficiency symptoms, thank you!

It's terrible @Redbluegreen123 and I can't help but think ibs diagnosis is just a bit rubbish. It sounds like POTS is something worth exploring for you?

I've had a coeliac blood test but I told them it was pointless,I'd cut gluten out at that point for a good 6 months.

It's almost like my body has just suddenly decided it doesn't want to tolerate things that I've never had a problem with before: gluten, alcohol, dairy. I had a trauma about 3 years ago and since then everything is just giving up on me, failing. And I'm putting so much energy into trying to figure out what's wrong and I could just be chasing shadows.

The "threads like this" is showing so many people in a similar boat with no real outcome. It's tempting to say screw it and crack on and try to ignore it. But on bad days I really can't!

Sorry @greenacrylicpaint I didn't scroll far enough. I've never heard of that before, had a quick Google.. very interesting. When I last saw medics when it was really bad they wanted to rule out pancreatitis and gall stones, as well as appendicitis. My anatomy knowledge isn't great but I think it's in the area? Lots to think about, thank you

I don't know how helpful this will be OP but I really recommend reading up about gut issues/healthy gut and also the effects of trauma on mental and physical health.

Mind and body are totally connected and many physical health issues (especially non specific ones) are related to mental stress/trauma.

I recommend listening to Dr Rangan Chatergee's podcast and looking up Dr Gabor Mate

Just read this thread and thought I'd chip in. In 2021 I tested positive for hpyloyi after being ill for 8 months. It cleared up and I was fine till about 2 weeks before Christmas, when I felt I was having all the same symptoms as before. Aching all over, under my ribs and in my back. Heartburn, bloating, fatigue and stomach ache, particularly under my left rib and in my middle. I have done another hpylori test and it's negative. The GP suspects a hiatus hernia and has prescribed Lansoprazole while I wait for blood tests, I'm also on a very bland diet. I'm 55 and peri menopausal and I'm absolutely fed up of feeling ill. I feel like I don't know my own body anymore.

Have you been seen by a gastroenterologist? What other tests have they done? Have you had an endoscopy or colonoscopy? I had similar issues and was investigated for IBD (as well as a few other scary things due to some weird blood results). I also had a trauma about 3 years ago and symptoms really picked up after that.

I was eventually diagnosed with Exocrine Pancreatic Insufficiency. Basically, my pancreas doesn’t work anymore so I don’t produce digestive enzymes. That explained a lot of the GI symptoms, but then other things like fatigue, joint pain, I think we’re caused by deficiencies as I wasn’t able to absorb any vitamins and minerals from food. I was severely folate deficient and also vitamin D. I’d never even heard of EPI before. Apparently, a significant number of people who have it have no known physiological cause but it started after a period of extreme stress and trauma, which makes a lot of sense now. I take enzymes with all food now and it’s much better.

@SkyLarkDescending I completely agree re the mind/body or physical/mental health connection. I've tried to research the healthy gut thing but my brain is so foggy it doesn't sink in properly and I find it all so confusing- I'll definitely give the podcasts you've mentioned a try. Perhaps hearing it instead of reading it will help!

@Eightiesgirl I hope you get some help and a definitive diagnosis soon. It's all consuming isn't it. I'd assume (?!) h pylori would've been picked up by now with all the tests I've had (below) but the symptoms sound very familiar. I've wondered about early/peri Meno but I'm only early thirties and no gynae issues or family history.

@mindutopia the tests I've had over the last 6 months or so: blood tests (x3!) CT scan, MRI scan, ultrasound, stool sample. I've just had a referral through from the gastroenterology department, so just need to wait to be contacted with an appointment now. No idea how long this will take- all my others have been pretty speedy so fingers crossed.

I imagine they will want to do a coeliac test/colonoscopy but will wait and see before I contemplate reintroducing gluten.

My friend who had similar symptoms follows the FODMAP diet and it appears to have helped her. It is very strict and quite brutal though.