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Original poster

Gilbert's syndrome - what helps?

21 replies

Thecatgotmytongue · 05/08/2016 01:54

Bf has been diagnosed with gilbert's syndrome following a blood test showing raised bilirubin levels. The main symptoms are extreme nausea most of the time, tiredness and feeling drained.

Does anyone know what will help? The gp just says it's not dangerous and he has to live with it. Anti emetics don't help. It's really getting him down as it's most of the time. I'd be grateful for any suggestions.

OP posts:
Eroica · 05/08/2016 02:23

Sorry to hear he has nausea with it. My DH and his brother have it, but don't have the nausea.
Is it worth trying usual (pregnancy!) nausea remedies? Ginger biscuits, dry food, ginger tea, eating small amounts but more frequently?

AgentProvocateur · 05/08/2016 06:20

Maybe his symptoms are unconnected. I have it (found out following routine blood tests) and have no symptoms. GP said about 10% of population has it, but as its symptomless, don't know.

Strawclutching · 05/08/2016 06:25

My husband has it and was told it's symptomless by his doctor. He does like to claim it's 'his syndrome' every time he forgets something though.

YoungGirlGrowingOld · 05/08/2016 06:35

I also have it - only detected during chemotherapy when I was having regular blood tests. I was also told it was symptomless.

Camembertie · 05/08/2016 06:35

DH has it and again no symptoms other that going yellow if he's been burning the candle at both ends and or drinking more than one or two nights a week.

It sounds like he has something else going on and they've found the Gilbert's by chance, could he possibly have any anxiety going on as I get very similar when my anxiety is bad (to the point I have convinced myself I am pregnant and have morning sickness I've felt that bad).

Hope he feels better soon

lexiferluther · 05/08/2016 09:08

I was diagnosed with Gilbert's syndrome as a teenager. I was diagnosed because I was bright yellow and had associated fatigue and nausea. I was living in Hungary at the time and my GP there seemed far more informed about GS than any GP I've ever seen in the UK (how can you describe any condition as symptomless - if there were no symptoms there would be nothing to diagnose surely?). Has your BF tried taking a vitamin B supplement? Vit B1 is particularly effective for me when my Gilbert's is playing up.

Original poster
Thecatgotmytongue · 05/08/2016 10:09

He's tried every anti nausea trick and tablet under the sun, nothing even touches it Sad

He's stays taking vitamin b supplements as we read online it can help. No change so far.

Yes the GPs day is symptomless, but there are lots of people online say otherwise. He is also being seen by a gastrologist, who can't find anything, although he's had ulcers in the past.

If we could find anything that helps with the nausea it would be a start.

OP posts:
Original poster
Thecatgotmytongue · 05/08/2016 10:11

Sorry typos .. He's started taking vit b .... GPs say it's symptomless ...

OP posts:
dotdotdotmustdash · 05/08/2016 10:11

It's actually known as 'Gilbert's non-disease of the liver' and is considered an inherited normal variant of liver function. My son has it and it merited no more than minor comment from the Gp. I think your BF's symptoms will probably be related to something else.

Weedles · 05/08/2016 10:23

My adult DS has this. I diagnosed it Wink then the doctors confirmed it with blood tests. He was always a bit yellow and then when he is sick or tired he goes an even yellower colour. He did seem to get a lot of stomach aches as a child which is why we enquired about it but as an adult he is symptomless except for the yellow and a dislike of alcohol. Drinking alcohol makes him go extra yellow and he really doesn't like how it makes him feel. He's been tea total since 16 or 17 - (he still goes clubbing all the time.)

His yellow complexion is a little unattractive really and he would rather he didn't have it. It makes him look a bit sallow. I think he is a bit self conscious about it but it's not the end of the world either Confused

Loads and loads of people have stomach problems and loads have Gilbert's so it's not suprising if some have both. They will be connected With some people and not with others.

A lot of the Mumsnet emoji look like they have Gilbert's Confused

Eroica · 05/08/2016 11:10

Yes- GPs always say symptomless, but many people that have it say they get stomach aches.
DH does.

Original poster
Thecatgotmytongue · 06/08/2016 10:58

Yes, stomach ache but its the extreme nausea that he finds so difficult to live with.

OP posts:
augustusglupe · 06/08/2016 22:46

I have Gilbert's.
Basically I find I'm fine if I just look after myself...as in, not drinking atall or just occasionally, not over eating, exercise, getting enough sleep.
I've never gone yellow, but if I get run down I look awful and get a pallor to my skin and I get unbelievably tired. As I'm getting older I find I don't suffer with it so much, but I think I just look after myself more too.

YerTiz · 06/08/2016 22:52

I find drinking lots (lots!) of water and getting as much sleep as possible helps me with the tiredness and occasional nausea I get. I also take iron/vit B tablets and vit D high dose spray. If I'm looking after myself I feel well.

DoItTooJulia · 07/08/2016 20:03

My DH has Gilbert's, as does his dad. They go yellow-ish at the first sign of being tired or run down. He also had stomach issues, but they're under control now. (Less caffeine helped the most and relaxation techniques weirdly.)

He doesn't drink either-I never connected the two and I don't think he has, so that's interesting.

What anti-emetics has he tried? Has he tried metoclopramide (sp?). And are they looking for another reason for the sickness/nausea?

allowlsthinkalot · 07/08/2016 21:51

A good friend of mine has it and she did have symptoms of stomsch aches, nausea and feeling quite poorly at times.

She cut out dairy, caffeine and alcohol and it made a major difference to her.

Original poster
Thecatgotmytongue · 08/08/2016 08:34

Thanks.

He doesn't drink alcohol at , or caffeine.

I'm not sure what anti emetics he's tried, I know there's been lots of different ones and none have helped, including one they give to chemo patients.

He drinks lots of water and herbal tea. I'm trying to get him to cut out dairy - he has almost.

He's seeing a gastro specialist too.

OP posts:
MaitlandGirl · 08/08/2016 08:50

My eldest 2 have this and they don't drink, or if they do they just drink cider - def no strong spirits at all.

DS is coeliac so often feels nauseous, bloated and tired and DD is lactose intolerant so again the same - but that's usually if they've slipped up on their dietary restrictions. They're 20 and 18 and both at uni so slip up more than I'd like.

Unfortunately being exhausted is a common trait amongst Uni students so it's hard to tell if it's down to that or the Gilbert's Syndrome. The yellow eyes and skin are hard to put down to too much studying though.

My kids find peppermint or camomile tea useful with the nausea and bloating but mostly they just have to push on and get on with it. Sorry, that's not very useful :(

lougle · 08/08/2016 09:11

Would phototherapy help, as is given to newborns? I have no idea if it would bring risks as well as benefits, but if it's excess bilirubin that's the issue, photorx would reduce it!

Original poster
Thecatgotmytongue · 08/08/2016 10:00

I'm not sure, I'll get him to ask the Dr.

OP posts:
HugItOut · 08/08/2016 14:06

My medic DS said there was some health benefit associated with Gilbert's but I can't remember what he said.... It might have been to do with heart attacks or cholesterol or something.... Does anyone else know? 🤔🤔

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