The REAL Gilbert's syndrome ?

Hi been diagnosed in August but have been told its harmless even though past year I have had many different symptoms. Since then I was also told I have chronic fatigue syndrome as Gilbert's is harmless but after talking to suffers of each it seems to be the Gilbert's. has anyone else had these issues in general who have Gilbert's or is it totally harmless very confused at the mo.thanks

6 Replies

  • Hi Mattie

    How are your spells of jaundice dealt with/treated? Assuming this is one of the symptoms?

    Its seems it not unusual for patients with Gilberts syndrome to have problems with loss of appetite, abdominal pain and fatigue, but it seems these are not life threatening. Are these the symptoms you have.

    Bigplanet has useful information on his posts about dealing with loss of appetite, including eating 8 small meals or 'grazing' through the day. Fatigue is something we all seem to have to deal with when our livers are stuggling. How much does the fatigue impact on your day/are you able to rest on bad days?

  • My worst symptoms are muscle and joint cramps, fatigue and no sleep but seem to get really bad weeks. The jaundice seems to be a minor one. Seem to be working though it but its a struggle. My job is quite physical so it can be a bit of a challenge. Thanks

  • mattie

    Agree with Bolly, the symptoms seem so similar to mine all of ours having ALD or LD.

    Looked at NHS web site for diets for fatigue But I would not recommend it as seems generalist and not taking into consideration Liver Disease which is the problem there is no magic diet. Ie eat at set times, disagree eat small and often and when you feel like it within reason. Keep away from the baddies, salt....I am a good one to say that, I go off the rails, and partner hides the salt grinder, I know I am in the bad books. Use fresh and be sensible.


  • hi, my son has gilberts, he is 17 years old, finds himself full up from his meals easily quite often, has had problems with constipation in the past, and can get tired from sport, more easily than others, although at times he doesnt seem to be so affected, hope this info helps you. slugg ps. does any one know if this syndrome affects entry into the police

  • Hi Mattie. have you had your calcium, potassium and magnesium levels checked recently. Cramp can be sign of deficiencies. Also you could ask to have your Vit D3 levels checked as many of us in the UK are deficient due to lack of sun and this causes fatigue, aches and pains.

  • I have had a similar problem. I went to the doctor with no idea what was wrong having cramps in my abdomen that stopped me standing, feverish feelings, retching, bloating, dizziness, and exhaustion, and very frequently feeling ill. Had had the problems for five years but my mum told me they were just hormonal and not to worry so I ignored it for ages. I go see the doctor and she's talking about bowel conditions and asks me to get a blood test to see if I have anything other than IBS. She said she would message when she had the results but five weeks later after three episodes I got sick of waiting and called in. A nurse tells me on the phone that I have gilbert's syndrome and that is is minor and non-harmful and that my bilirubin count is only 21 so they are not worried, and that is the end of it. No follow up, no real explanation, no solution. So I find out on here that all of these issues have been commonly reported by people with gilbert's syndrome, and I'm really at a bit of a loose end.

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