Gut / joint inflammation - where next?

Sounds very familiar. I go through periods of something similar for weeks a time, then I’ll wake up one day and feel fine for a couple weeks, then it comes back again. Had it for years and doctors haven’t been very good at working it out and I can’t ever seem to link it to a trigger. 

Blood and stool tests are clear other than elevated liver enzymes but no real explanation of that from docs. 

Posted by: airvent

↑

Sounds very familiar. I go through periods of something similar for weeks a time, then I’ll wake up one day and feel fine for a couple weeks, then it comes back again. Had it for years and doctors haven’t been very good at working it out and I can’t ever seem to link it to a trigger. 

Blood and stool tests are clear other than elevated liver enzymes but no real explanation of that from docs. 

You just live with it or do you have any lifestyle changes? supplements.

(Interesting we both have liver numbers a bit off.)

I've had similar, i've had every test, every scan, every probing, everything, more than once for most of them. They're unable to find a resolution. I have tenderness/pain pretty much constantly, but it's not enough to keep me awake at night mostly. I've tried cutting things out but nothing has any effect.

Have you been tested for Scleroderma? My wife has it and it’s an autoimmune disease, a type of arthritis that affects different people in different ways. I hope you’ve not got it, it’s horrible.

Posted by: weeksy

↑

I've had similar, i've had every test, every scan, every probing, everything, more than once for most of them. They're unable to find a resolution. I have tenderness/pain pretty much constantly, but it's not enough to keep me awake at night mostly. I've tried cutting things out but nothing has any effect.

Does that mean you don't take anything for it -or haven't been given any options at all for treatment?

Posted by: wheelsonfire1

↑

Have you been tested for Scleroderma? My wife has it and it’s an autoimmune disease, a type of arthritis that affects different people in different ways. I hope you’ve not got it, it’s horrible.

Not heard of it. I will look into it.

Sounds miserable.

Posted by: rone

↑

Posted by: weeksy

↑

I've had similar, i've had every test, every scan, every probing, everything, more than once for most of them. They're unable to find a resolution. I have tenderness/pain pretty much constantly, but it's not enough to keep me awake at night mostly. I've tried cutting things out but nothing has any effect.

 

Does that mean you don't take anything for it -or haven't been given any options at all for treatment?

 

I take omeprazole for it, but i'm not sure how much effect it has in truth. I was also takinf buscopan and your usual mint based solutions lol. But again, i'm not sure on the levels of effect on these. I'd had 4 different consultants, half a thyroid removed and more MRI/Ultrasound/scans than i can count.... I've pretty much given up on finding a solution.

You need to actually know what is going on, but I have news for you. The NHS won't provide many of the answers, especially where gut dysbiosis or permeability may be involved. There are some very good stool tests that you can have privately that will give you far deeper insight – far and beyond what the NHS tests would tell you. You will need to find a good private clinician first. I recommend Nordic Labs for testing.

I was on long-term antibiotics and have been through this entire process before finding health.

https://www.nordiclabs.com/EDetail.aspx?id=3827

Posted by: flipiddy

↑

You need to actually know what is going on, but I have news for you. The NHS won't provide many of the answers, especially where gut dysbiosis or permeability may be involved. There are some very good stool tests that you can have privately that will give you far deeper insight – far and beyond what the NHS tests would tell you. You will need to find a good private clinician first. I recommend Nordic Labs for testing.

I was on long-term antibiotics and have been through this entire process before finding health.

 

Thanks for this.  Basically I will give anything a shot at this stage.

Posted by: airvent

↑

Sounds very familiar. I go through periods of something similar for weeks a time, then I’ll wake up one day and feel fine for a couple weeks, then it comes back again. Had it for years and doctors haven’t been very good at working it out and I can’t ever seem to link it to a trigger. 

Blood and stool tests are clear other than elevated liver enzymes but no real explanation of that from docs. 

 

You just live with it or do you have any lifestyle changes? supplements.

(Interesting we both have liver numbers a bit off.)

Just live with it unfortunately. Some things I’ve thought had worked seem unreliable so made me doubt that there was any actual connection. Exercise can trigger it if I push harder than usual, but equally a lack of activity can cause it too so finding the line between is very difficult. It’s like swollen painful joints and quite bad abdominal bloating. Too much fibre causes it so foods like broccoli are out, and also eating a protein rich diet seems to cause it too. 

The liver thing could be unrelated but possibly some auto immune thing as it’s a marker of liver damage, despite being fairly young and a non drinker. My parents have a variety of auto immune issues so probably inherited genetically. 

Omeprazole is prescribed and seems to help the gut issues a little but that was prescribed for a different reason unrelated to this, heartburn. 

I've found that about cycling - I feel much better days after good rides. Sort of a win win.

Thanks.

My daughter has Crohn's disease and has lost long sections of her gut to it. The symptoms were not unsimilar, so I'd check that out.

Posted by: supernova

↑

My daughter has Crohn's disease and has lost long sections of her gut to it. The symptoms were not unsimilar, so I'd check that out.

Thanks - that's what I thougth. But my IBD markers came back fine. So i'm guessing they won't go any further.

htt
https://www.nordiclabs.com/EDetail.aspx?id=3827ts://www.nordiclabs.com/EDetail.aspx?id=3827 t

Not saying this will be relevant but the process might be.

wife got really sick in her early twenties. Doctors were useless. She eventually worked (through a process of elimination) out that she had an intolerance to fat. After a while we managed to isolate that to saturated fats. Dairy and meat fats are particularly bad...but if she stays off them she's fine.

I've got Ankylosing Spondylitis which has similar issues (it's an autoimmune condition causing painful joints, especially in the morning, and can cause digestive issues).

I tried lots of dietary ideas and supplements, none of which seem to have done much.

But over the last year i have made good progress by going all-in on an anti inflammatory, gut-health focused diet. This equates to, for me:

No caffeine

No sugar

No booze

Low-ish starch (ie replace sandwiches with salads, and on a meat & 2 veg meal have a lot more greens and a lot less potato)

Replace potatoes, bread and pasta with beans, lentils, brown rice where possible

Lots of probiotics (sauerkraut, kefir etc) and prebiotics

Eat a wide range of veg, nuts, seeds, fruit

Supplements are mainly a probiotic, omega oils, vitamin D.

I'm also going dairy free which i should have done years ago (always had some minor dairy issues but i just liked cheese too much).

Basically, eat a boringly healthy diet. It's been an interesting thing to do - we all know what a 'healthy diet' looks like, and may think we eat fairly healthily (at least, i did), but actually there's often a lot of room for improvement.

I do slip up sometimes, and i still eat pasta at least once a week.

But over the last year I've gone from taking quite a high dose of prescription anti-inflammatories, to, in the last month, none at all.This was after several years of significant pain.

It was a slow improvement - didn't really start noticing the benefits for 6-8 months - but I'm fairly confident that the diet has played a significant part.

Before this, i kept trying things for maybe 4-6 weeks (ie going gluten free, or veggie, or whatever) and never seeing a difference.

My girlfriend suffers with her joints if she eats certain foods - now she tries to avoid gluten which helps and having lots of veg also helps

Before this, i kept trying things for maybe 4-6 weeks (ie going gluten free, or veggie, or whatever) and never seeing a difference.

Yeah I'm in that camp.

Sounds like you are super strict.

Curcumin pouches make a huge difference - but don't know whether that's a fix.

No caffeine

No sugar

No booze

I dropped sugar ages ago and that makes a differences. I should really try caffeine. But then it's supposed to help with inflammatory stuff.

So confusing.

I dropped sugar ages ago and that makes a differences. I should really try caffeine. But then it's supposed to help with inflammatory stuff

Yeah caffeine is a tough one! I also suffer very badly from fatigue, ever since i got COVID. So the caffeine thing is also about trying to keep my stress levels/heart rate down, for the sake of my parasympathetic nervous system. It might not be essential for inflammation purposes.

Another thing i forgot, but suspect might have helped: i started going to the dentist (!) and learned my gums were inflamed. So i started flossing and using those interdental brushes, for the first time in my life, and this coincided with the period where my joint pain started easing off. This is correlation rather than causation of course, but it seems possible that tackling inflammation at one site could help the body deal with it elsewhere. So a holistic approach could help.

Sounds like you are super strict.

Turns out i dislike physical pain more than i like bread and sugar! 😅

Posted by: doris5000

↑

I've got Ankylosing Spondylitis which has similar issues (it's an autoimmune condition causing painful joints, especially in the morning, and can cause digestive issues).

I tried lots of dietary ideas and supplements, none of which seem to have done much.

But over the last year i have made good progress by going all-in on an anti inflammatory, gut-health focused diet. This equates to, for me:

No caffeine

No sugar

No booze

Low-ish starch (ie replace sandwiches with salads, and on a meat & 2 veg meal have a lot more greens and a lot less potato)

Replace potatoes, bread and pasta with beans, lentils, brown rice where possible

Lots of probiotics (sauerkraut, kefir etc) and prebiotics

Eat a wide range of veg, nuts, seeds, fruit

Supplements are mainly a probiotic, omega oils, vitamin D.

I'm also going dairy free which i should have done years ago (always had some minor dairy issues but i just liked cheese too much).

Basically, eat a boringly healthy diet. It's been an interesting thing to do - we all know what a 'healthy diet' looks like, and may think we eat fairly healthily (at least, i did), but actually there's often a lot of room for improvement.

I do slip up sometimes, and i still eat pasta at least once a week.

But over the last year I've gone from taking quite a high dose of prescription anti-inflammatories, to, in the last month, none at all.This was after several years of significant pain.

It was a slow improvement - didn't really start noticing the benefits for 6-8 months - but I'm fairly confident that the diet has played a significant part.

Before this, i kept trying things for maybe 4-6 weeks (ie going gluten free, or veggie, or whatever) and never seeing a difference.

 

 

This seems a really good approach. If you're interested in optimising, have a look at Paleo. I cheat a bit with rice, hummus, dairy replacements. It's really good for reducing inflammation, which can also come from commercial agricultural methods (grain processing and storage, etc) and provides a useful framework for a cleaner approach to diet. I've found that using it this way with sensible cheats has yielded really good results, rather than applying it as an unsustainable religious doctrine that creates continual penance!

Another Ankylosing suffer here ( and colitis). Ask if your bloods were checked for HLA-B27 marker as that's what flagged my spondylitis.

Elimination diet to work out what is causing the inflammation. It may take a while.

There is a school of thought that in some cases IBS might be linked to neuroplastic changes aka TMS aka mind-body syndrome. Not quackery. I'm not saying this is a factor in your case OP but might be worth a look, especially as you mentioned symptoms changing rapidly, and stress. Have a look at Howard Schubiner (Unlearn your pain) or Alan Gordon (The way out). Or the curable app.

Whilst I wouldn't rule out IBS - It's much different to IBD. Although it's possible to have both which must be a nightmare.

But I will take a look at that material. thanks.

@doris5000 how does caffeine keep your HR down?

I think it's possibly a long COVID thing, but when caffeine is part of my diet (not loads, like maybe 1-2 coffees a day), a stroll round the park can send it shooting up to 145bpm. Even walking up the stairs can see it at 130.

And cutting it out seems to really help with that. The stroll round the park is much more likely to stay below 100bpm.

I don't know if healthy people would see the same results!

I misread your initial post, makes complete sense

Hiya,

it may be worth cutting palm oil from your diet. It is a known inflammation cause. I found I have a problem with it and since I cut having it in my diet, its made a massive difference.

JeZ