Advice from the oldest Gilbert in town

Posted , 4 users are following.

I just came across the forum as I have contributing to hip replacement and just thought I would pop in to say hello.

I was diagnosed with Gilberts Syndrome in 1978 and as far as I am aware I was the first diagnosis in the UK. My diagnosis came about after severe jaundice devloped after having my appendix out.

This missing enzyme that we all have in common affects us in different ways is a benign condition that most GP's I have come across either don't know anything about or make it up!

Signs and symptoms for me...

Mild to annoying jaundice

Metallic taste in mouth on waking

Fatigue days

'Toxic' days

Fuggy brain days

IBS/sluggish bowels

Numerous stones and cysts

Inability to process outside hormones (no contraception pill, some drugs and anaesthetics)

Raised bilirubin tests

Unexplainable aches and pains

Bulky liver (ultrasound results)

I don't need much sleep

A weird kind of pain threshold which manifests in being undiagnosed with a number of things until they got to 'severe' - gall stones, appendix, ectopic pregnancy.

Hints and tips....

I drink plenty of water

I drink alcohol but avoid getting drunk

I take milk thistle to help clean out the liver

I give in when i have fatigue

I have a six minute sun bed every week in winter

I get out in the sun in summer

I have very little red meat

I have a mainly veg diet but will eat chicken or fish

I avoid additives and chemicals like the plague,

I make my own bread and meals from scratch

I avoid salt or anything that is going to make my liver struggle.

I have tried various things over the years and have found that long term clean living works for me.

My symptoms are always worse when my body is under assault from something else, illness, stress etc.

I am aware of my condition but don't let it rule my life. I see it as a pain in the ass sometimes but it's not going to kill me!

Hope this helps any or some of you

Kate x


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4 Replies

  • Posted

    I am not sure that you are the oldest.!!  My birthdays start with a seven now...

    BUT  I WOULD AGREE with almost all your comments.

    Especially as regards eating well and staying off processed foods etc.

    For myself the removal of spices from my diet made  a massive difference

    However we are all different and each must find what works for them


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    • Posted

      Hi Dick, I meant oldest as in earliest diagnosis in the UK (1978) , I haven't met anyone diagnosed earlier. I think thousands of people have been found to have it since who are older than me (you for instance).

      I think what you ingest is key to everything because the liver is compromised.

      I eat loads of spices and many of them help with blood cleaning etc. Whatever works for you is the best x

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  • Posted

    Hi Kate,


    This is handy, thanks. Many of the tips I follow already, the ones I don’t I may give a go.

    I don’t have much salt but I will try and eliminate it as much as possible (I know MSG is worse and my body doesn’t like it), is there anything else not listed that makes your liver struggle?


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    • Posted

      Hello Jason,

      I didn't list everything that I think my liver struggles with because we are all different and the main thing is to find out what works, or doesn't work, for you. As I've got older I have found that too much of anything will make symptoms worse. I try to eat in moderation but battling the menopause and a year waiting for a hip replacement led to pounds I didn't need and I really noticed the difference.

      I have found a lot of GS people moan about their condition but there is an awful lot you can do - it's not all doom and gloom. I would suggest, Jason, that you eliminate things one at a time and see if it makes a difference. The target you are aiming for is making up for that missing enzyme by giving your liver an easy time. Good luck.

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