Has anybody been diagnosed with Gilbert's syndrome?

[Kazzacrazy]

Hi everyone has anybody been diagnosed or think they may have Gilbert's syndrome on here? I've had gut issues for years normally constipation but had horrendous bouts of diarrhoea and cramps since January. I've had lots of bloods ct scan and gastroscopy and I've followed the fodmap diet. Things finally are settling down and i Saw the consultant again on Friday he thinks I have slow transit which was causing over flow 😪 and I'm to continue with precalopride for a few months. Hes also weaning me off omeprazole as that can cause gut issues 🤷‍♀️They also think I have Gilbert's which in itself isn't harmful most people only find out they have it when they have numerous raised bilirubin levels having blood tests for other things. All my other liver tests were normal so a diagnosis of G.S is highly likely, Sorry I'm waffling.... I've joined a forum for G.S and everyone on there has some form of digestive/ stomach ibs issues so was wondering if anybody here had it? It can only be 100% diagnosed with a dna test which I'm in the process of doing.

[Kazzacrazy]

nhs.uk/conditions/gilberts-...

[userotc]

Just to share 2 personal "mysteries" re GS:

1. I was "diagnosed" by GP because my billirubin was above normal range several years ago (up to 70 with upper range 20). The level started falling ~8 years ago years for unknown reasons, particularly as I only drastically improved diet & wellbeing ~5 y ago. The fall has continued gradually since and is now in-range at 14.

2. My dad's b/r was in range for years then increased to 50% over quite suddenly. GP said it was likely GS but my dad said it was more likely statins which he was on around that time. A retest after statins stopped (for good!) confirmed dad was right and GP agreed as his test result was in range. He is now also at 14.

(Of course dad's case is less mysterious since statins can adversely affect the liver).

So in both cases, Gilbert has left the building! Maybe your case could be more like dad's ie due to medication?

[Kazzacrazy in reply to userotc]

Hi thanks for your reply G.s was mentioned to me because of my high bilirubin when I was diagnosed with cancer over 20 years ago but I never gave it much thought as the consultant said it didn't need any treatment then obviously I was more concerned about the cancer. Its only now im having more blood tests I've noticed pretty much every time my levels are high never under 30. I do know it can go back to normal levels if you keep yourself well so here's hoping now I'm starting to feel a bit better then things will improve 😊 thanks again.

[bookeater]

My son was diagnosed in his late teens, it can make you tired but was told to ignore it.

[Kazzacrazy in reply to bookeater]

Hi I know a lot of drs think this and dismiss it... but after joining the forum it seems its pretty obvious a lot of people suffer with symptoms which seem to be related to G.s it's a mine field 🤔

[Orchid99]

Hi, you story sounds just like my situation except the Gilbert's Syndrome. I was on omeprazole for 6yrs before I developed constipation with overflow diarrhoea and awful cramps, my recent transit study has confirmed I have slow transit. I also did a methane breath test as I have read that methane overgrowth in the colon can cause slow motility which came back highly positive. I'm currently on my own treatment plan for the methane but yet to find out my treatment options for the slow transitnif its not related to the methane overgrowth. How have you managed to settle things down in regards to the horrendous overflow symptoms, is it the prucalopride that's made the difference? I take movicol daily at the moment for mine but don't feel its helping much because I'm still getting pain and cramps and some overflow...it's a nightmare!

[Kazzacrazy in reply to Orchid99]

Hi there I'm sorry to hear you're suffering it's just awful isn't it? Luckily I haven't had an episode since I've been taking prucalopride it's still not brilliant but I'm happy I go most days and have only experienced the horrendous painful cramps, bloating and diarrhoea once since but it only lasted about an hour previously it was up to 10 days. They never mentioned methane to me I will mention that next time. He did say the omeprazole can cause constipation and a bacteria build up in the gut. I've been taking it for years to, as they said I had a hiatus hernia but this new consultant doesn't seem to think I have one 🤷‍♀️ I'm trying to only take it every other day any longer and the acid symptoms start. How are you dealing with your methane? I really hope you can get some help it's truly miserable 😔 x

[Orchid99 in reply to Kazzacrazy]

Thats frustrating for me, I asked whether omeprazole was the cause of my symptoms and the gastro said no, although I will say the overflow diarrhoea started when I tried to wean of it but when I stopped weaning the overflow calmed down......strange! If been ppi free since Jan 2020 but the overflow etc remains. I have cut out so much food thinking it was causing my symptoms but now realise its functional not the food, but I've caused dysbiosis by doing that now and am having trouble reintroducing foods again. I'm doing herbal antimicrobials as per my functional practitioner that I have paid privately for, the first round reduced the methane by just over half and now I'm praying the second round will clear it to see if my symptoms improve. I have a feeling my gastro will prescribe prucalopride, did you get many side effects in the beginning, I've heard some horror stories which make me nervous but know headache is the most common....yes this condition is horrible and definitely limits me in what I can do x

[Kazzacrazy in reply to Orchid99]

How awful for you! I had the headache from hell for a week but no other effects so far. Mine told me to take up to 4mg if needed and he said I might not need them forever my body might just get used to going more I'm not convinced though, I've suffered with constipation for as long as I can remember. Good luck, I hope you can get prucalopride and they give you some relief x

[Orchid99 in reply to Kazzacrazy]

Thank you, i have to wait until October for my treatment options unfortunately. Hope things improve more for you and your bowels start behaving 🙂 x

[Kazzacrazy in reply to Orchid99]

Thank you, you too. Can I ask you how you weaned yourself off ppi? I'm just taking it every other day at the moment but the pain starts if I leave it any longer 😪 did you just push through the rebound effects or do it slowly? Xx

[Orchid99 in reply to Kazzacrazy]

I'm the beginning I opened the capsules and took a couple of beads out at a time and that helped with the rebound but then they told me to stop cold turkey for my colonoscopy and I didn't go back on after and seemed OK upper stomach wise.

[Kazzacrazy in reply to Orchid99]

Ok thank you will see how I go 😌

[Sunshinefordays31 in reply to Orchid99]

Hi there, really sorry for this random out of the blue message but was just reading this thread and saw you refer to a functional practitioner who seems to have recommended stuff that’s actually been effective…I wondered if you could possibly drop their name here for me to follow up with them? Thanks so much.

[Orchid99 in reply to Sunshinefordays31]

Hi, I used a company called Healthpath and the lady was called Victoria Fenton but she has since left the company and gone on her own, she has a website if you pop her name into google

[Sunshinefordays31 in reply to Orchid99]

Thank you so much!

[Orchid99 in reply to Sunshinefordays31]

No problem, happy to help 🙂