Gilbert's Syndrome

[Kiri-Cupcake]

Hello, my name is Kiri, 26 years old, and have been diagnosed with Gilbert's Syndrome within the last year.

I understand there a varying degrees of the symptoms related to Gilbert's, making it a very difficult condition to get on top of, but within the last couple of weeks I have been struggling more than usual.

In a bid to get 'healthier' I have begun a a diet slightly higher in protein than I am used to having, lowering the carbohydrates (not cutting them out, just ensuring I don't over do them and make sure they're decent things like brown rice, sweet potato etc). My exercise has increased, but no more than I'm used to.

A week into these slight changes an influx of symptoms have hit me, extreme fatigue, headaches, abdominal pain (just under the ribs), brain fog, and when I do 'wake up' a bit I feel like my body just cant get going.

After requesting from the doctor to see a specialist or a dietitian to help determine if it's my new diet that is lacking in something or over doing something, I got the response of "there's no set diet for it, I can give you the number of a weight management service though"... not much help.

Are there any other fellow GS suffers on here that could perhaps relate to how I am currently feeling and give some advice if something has worked for them? All I can think is that I perhaps need to up my B vitamins, eat more iron filled foods... With little information or help from doctors i'm pretty much at a loss with what I can do.

Thank you

[Bolly]

I've tried searching this forum for Gilberts but got no hits, but if you go back to 'Google' on your browser and type in 'HealthUnlocked' and 'Gilberts' it seems to find all the previous posts from people with Gilberts or asking questions about Gilberts. I havent read them all, but the first one to mention nutrition said they have eliminated saturated fats and foods with saturated fats from their diet.

[Kiri-Cupcake in reply to Bolly]

Hi Bolly, Thank you for your reply. Will do a search for 'HealthUnlocked' and 'Gilberts' and see what it brings up

[Zara-LouiseD]

I have Gilberts Syndrome and my GP thinks it is totally benign and has no particular impact on health....although they did concede that it may have something to do with my adverse drug reactions and alcohol intolerance.......

I suffer with regular migraine, have had pain in my abdomen under my ribs, get fatigued really easily and have brain fog from time to time. I have never really considered altering my diet to improve the Gilberts, as nobody has ever told me it would make any difference!

There are a couple of good forums online with some interesting information

gilbertssyndrome.org.uk

I hope you find some answers and feel better soon

[Kiri-Cupcake in reply to Zara-LouiseD]

Hi Zara, thank you for your reply

It sounds like this is a common thing across the board from GPs. Every forum or site I have been on, people are are struggling to find answers as GPs dismiss it pretty quickly. It may well be that it's something we just have to deal with from time to time.

I've managed to get in with my GP today to discuss the nutritional side of things further.

I'll let you know if there's any progression

[Kiri-Cupcake]

Just to keep you updated. Unfortunately they said a dietician wouldn't be of any benefit, as my diet is good. They suggested increasing foods though that are high in folic acid:

* broccoli

* Brussel sprouts

* liver

* spinach

* asparagus

* peas

* chickpeas

* brown rice

* fortified breakfast cereals

A majority of people with Gilbert's lack the B vitamins, so in order to help battle the 'symptoms' make sure your diet has 0.2mg of folic acid a day (the body doesn't store it, so requires it everyday), I however have been prescribed 5mg a day.

I've got to go back in 6 months for more bloods to make sure the dosage of folic acid is enough. Fingers crossed.

I hope this helps anyone who has been feeling the same as I have

[Bolly]

Glad to hear you are getting some support and advice, it helps when someone else with the same diagnosis comes forward.

Re getting to see a dietician on the NHS... I've come up against that stumbling block. They are few and far between and on the NHS probably only work with those who have either terminal illness and need nutrition n support, stroke patients with swallowing issues and those with food allergy type conditions such as Crohns.

You will probably get good advice from fellow sufferers via a specific charity or support forum for Gilbert's like Zara advises.

[GTFC74]

Hi, I was diagnosed with GS at the age of 19 and my cousin when he was 35. It is a herditary non benign condition. I found out about it after blood tests due to tiredness and "mind fog" which are common I GS. There are different types all related to hyperbilirubinum. I was told by my GP to just get on with life it doesn't affect you. It does. I would push for a referral to a dietician. My appetite suffered and added to the lethargy. I. Sure you ar doing all the right things. I have just joined here as I have cirrhosis not related to GS and found the help and support invaluable. Good luck and keep us informed.

Tony

[Musicalmom]

Hi! Wondering how you got in with this? My 13yo has elevated bilirubin levels.

[Beckshay19]

Hello there sorry to hear about your situation i have recently been diagnosed with Gilbert’s syndrome I’m only 18 almost 19 what do you recon i should do? 🙂

[Beckshay19]

This was helpful thanks 😊 xx