Gallbladder

[coeliacsucks]

Posting here for traffic.

I'm suffering with gallbladder flare ups! Latest started last night at about 11 but I'm still uncomfortable and in nagging pain now, despite taking dihydracodine (sp?). It's not the worst flare up I've had but certainly the longest.

I'm in hospital for a gastroscope exam (coeliac) on Tuesday and hoping it's passed by then.

I guess by question is, is it normal for the pain to last this long? Any suggestions as to how to get rid of it.

Have you excluded dairy and caffeine from your diet?
I had mine out 10 years ago so can't remember exactly what I did after a flare up but ahot water bottle the day after a flare up was always welcome.

Hi

Yes I've got 2 hot water bottles on the go at the moment, 1 long one round my back and 1 normal on my tummy/side. They help with the back pain mainly.

I'm also hungry but don't dare eat. Scared I'll make it worse but at the same time not sure if the hunger is is making it worse if you see what I mean.

Do you have a fever or headache along with it? I've never had one last more than 8 hours, and I think the longer it lasts, the more likely it indicates it could be an emergency I think. I'm having mine out Tuesday!

Can you have a small bowl of cereal with some fruit?

Can you get someone to go to a chemist for some Buscopan?

Failing that, lemon juice and olive oil can help the pain.

A colic episode shouldn't last longer than a few hours. You could possibly have an infection but you would be in quite a lot of pain if you do, unable to touch the area around your gallbladder etc. However if you think you might have an infection you need to be treated urgently with antibiotics. Hope you're ok!

Buscopan is routinely used for the spasm, codeine related drugs can actually make the spasm worse but ultimately as a fellow coeliac and sufferer of gall bladder disease get it out, my mum didn’t till it was too late, the surgeon (who was a colleague) took mine out at the first sign of trouble

And make sure your B12 levels are good, it’s a reservoir for B12

Ooh thank you for the tips. I had no idea about the buscopan, I sent DH on a mission to purchase some.

I only found out about the Coeliac due to bloods done to refer me for surgery on the gall bladder, but it fits every symptom I have and the bloods were a high positive apparently. They are going to look at the gall bladder too on Tuesday but the consultant wanted to get the coeliac sorted first, not sure why.

You need to eat something - an empty stomach can be just as bad as having eaten too much of the wrong thing. Something bland and fat free. Just a slice of dry bread was what I would nibble on to help take the edge off.
If you know what types of stone you have certain moment can help. I had a large stone which would routinely get stuck and cause a build up of bile in my gallbladder which would then swell and spasm.

A nurse once showed me how to stretch and lie on my left side and I swear as I copied what she showed me we both heard (and I felt) a ‘glue, glug, glug’ like emptying a full bottle upside down all at once! Once it cleared the pain receded (for a day or two until the next attack!)

@coeliacsucks the two diseases go hand in hand, I was very late being diagnosed and was in a wheelchair by then but originally was a theatre practitioner and cared for a lot of patients post gall bladder removal, Buscopan was the anti spasmodic of choice

When you’re in a downward cycle of coeliac disease we secrete a protein called homocysteine that forms stones which is why many of us end up having our gall bladders removed

The fact that you’re being cared for by a specialist already is excellent, listen to their advice closely but as I said keep an eye on your B12 levels and also folate as they’re co-factors (need each other for absorption) once your gall bladder is gone there is less in reserve

Just to reassure you we’ve now been GF for over 10 years, you adapt my DC (also diagnosed) remember very little from before, just please stick to the diet!

We lost a family member to cancer related to coeliac disease and my own mum died from surgical complications as she left it too long to safety remove it

Are you still in pain? If so you should go to the hospital. What do you have to lose by doing that? One night I went to bed and was fine, within a second I felt nauseous and all I did was lie down. I spent the rest of the night in pain on the floor eventually. Went to A and E and a scan showed too many stones to count. They still didnt want to talk about an operation though, talked about sending me home and watching my diet, but my inflammation markers were very high and wouldn't come down. Turned out it was about to burst, the surgeon was really taken aback afterwards when he came to speak to me. If you are still in pain now go to the hospital. My pain came out of the blue and I didnt have a history of pain, or gallbladder issues but it wasn't something that could be ignored.

Mine never lasted more than a few hours - I would call nhs24 just in case.

What colour is your urine?

I developed pancreatitis from gallstones. Better to get checked out

Thank you all so much for your responses. My urine is probably slightly darker than normal. The worst has passed now (maybe with the help of buscopan) just left with a pounding headache now!

I'm terrified of this procedure on Tuesday, does anyone have any experience?

@Tomnooktoldmeto my feratin level is 2 is that the same as folate? 🙈

May I ask if your need to use a wheelchair was as a result of not being diagnosed in time? Sorry if that's a really stupid question I'm just learning all about it.

I had an endoscopy (camera though the mouth - is that what you are having?). I had the sedation rather than the throat spray - it was fine. I mean, I don't think it was super fun or anything, but with the sedation I don't remember most of it, and what I do recall was just events with no overlay of emotion. And them someone offered me tea and biscuits, and all was good! You'll need someone to take you home afterwards though if you have the sedation.

I had mine out in July. You sound quite poorly, the dark urine is a worry.

When I was bad I lived on boiled potatoes and boiled sweets. Unsurprisingly, I was also pretty anaemic.

I think you should call 111.

My last attack was February, and the main bulk of it lasted 24 hours but I was still in pain for 2 weeks after. Bloody awful things! Hope you feel better soon

@coeliacsucks no but that ferritin level is truly shocking, how are you still standing!

Ferritin is stored iron, folate is the methylated form of folic acid, many of us have problems breaking down B group vitamins to their bio available (methylated) forms which means if we take the wrong form they just sit in the blood stream unused as we can’t access them. I routinely take Jarrow B right which contains all the accessible B group vitamins

I was in a wheelchair due chronic fatigue syndrome for 10 years, it was actually coeliac disease that had been missed as I am one of 1:9 coeliacs who cannot make antibodies well so it doesn’t show up in standard screening

I was finally diagnosed when my coeliac rash called dermatitis herpetiformis (DH) dried up on a gluten-free trial by that stage I was seriously ill with widespread nerve damage but after 6 weeks B12 treatment and no gluten I could walk again and have been stable for a decade but I’m at high risk of diet resistant coeliac disease

Feel free to DM me if you’ve got any questions, many of us try and reach out to the new members of our community to offer support

Right now though focus on your gall bladder, if it’s not resolving by morning or worsens before seek urgent help as this has the potential to become life threatening in some situations and the last thing you need is to become a hot or perforated gall bladder

Not trying to frighten you but I’ve been there professionally too many times

@Tomnooktoldmeto I had actually been referred for assessment for chronic fatigue, I had my appointment booked for October, as I said they stumbled across the coeliac by accident.

I'm 35 and most days have less energy than my 93 yr old gran ☹️.

The GP said my levels are not low enough to
do anything about. I had iron tablets but they didn't make a difference, now I know why! I frequently feel dizzy.

When the GP said my bloods came back as positive for Coeliac, I felt relieved. It's going to be a pain when I change my diet (after tuesday) but hopefully might finally start to feel better.

I'm not in pain now, it seems to have passed. Thank you for you kindness and explanations of things.

@coeliacsucks I’m glad you’re feeling a bit brighter, the knock on effects of coeliac disease are quite a lot to get your head around and just to warn you many GP’s received little to no training on the subject

The good news is that in about 6 months you’re going to feel much better

Advice I would give you is to treat it seriously, many people cheat and continue to eat gluten, this can and does kill, just slowly and insidiously over decades

Join coeliac UK, use your handbook and ask others. Gluten can be hidden in all sorts of weird places, lipstick is one

Learn to ask questions, don’t be fobbed off a well meaning medic may say your bloods are fine but you need to know your numbers and what they should be especially B12 as the UK is dangerously out of step with the rest of the world

Own your health, ultimately if you die or become seriously unwell, you are just a number, don’t be fobbed off it may save your life

Those of you that had your gallbladder out, how long until you were less bloated and could exercise?

I had lost a dress size and was really enjoying feeling fit and healthy. Since my Op on Tuesday my stomach area is huge and flabby and it's making me feel really low. I'm desperate to exercise but definitely don't feel able to. Did it take a few weeks, or more like months?

I can't stop eating and I think restricting fat for the last few.months means I'm craving all the fatty foods I've had to avoid. Which is likely not helping my bloating 😭

I've put on 5lbs since Tuesday the scales say! Bit stressed (I have binge eating disorder so my relationship with food is not great).

Any advice?

Hi @TowelStripes if you had your gallbladder out on Tuesday laparoscopically you need to remember that your abdomen was inflated with Co2 which caused some bloating

Also although it’s been done key hole you have still had surgery and it takes time to heal, stop expecting too much in the first few weeks and be kind to yourself

Try to eat normally, I doubt you’ve really gained 5lb but you may be retaining fluid, just be patient

Thank you @tomnooktoldmeto. I thought the CO2 would have gone by now but I am definitely not being patient. I hope you're right. I need to remember not to go to quick. Thanks again.