Gilbert's syndrome: symptoms & diagnosis
What are the symptoms of Gilbert’s Syndrome?
Gilbert’s Syndrome is usually discovered by chance when a routine or unrelated blood test reveals a rise in the level of bilirubin in your blood. it is likely that you will be told that you have high or raised ‘serum bilirubin’.
A significant increase in your bilirubin levels may lead to jaundice. This is a yellowing of the skin and the whites of the eyes. In GS this is seen more in the eyes. As bilirubin levels are usually only slightly increased it is likely to take a medically trained person to observe jaundice in your skin appearance.
Jaundice may become more obvious if you become stressed, ill with an infection (particularly a viral illness), starved or dehydrated – conditions not in themselves related to the disorder. Menstruation might also be a factor in sparking off higher bilirubin levels.
While jaundice is the only recognized clinical symptom, many people with GS report a number of common symptoms or effects they attribute to the disorder. This is why they may have a blood test in the first place. Such symptoms include:
- feeling tired all the time (fatigue)
- loss of appetite
- nausea or dizziness
- abdominal pain
- irritable bowel syndrome (IBS)
- difficulty maintaining concentration
- very dark urine.
Such symptoms appear to occur in varying degrees (and some are common to many liver diseases). At least 30% of people with GS do not show any symptoms at all.
How is Gilbert’s Syndrome diagnosed?
Gilbert’s Syndrome is often diagnosed in your late teens and early twenties. In most cases doctors should be able to establish diagnosis on the basis of liver blood tests and jaundice, if you have it.
Sometimes – but rarely – a blood test is taken before and after a 48 hour diet in which you are required to reduce your calorie intake. In people with GS a significant increase in their bilirubin levels is usually seen to follow this.
Liver blood tests are used to indicate whether your liver is inflamed (hepatitis), damaged or not working properly. They measure levels of certain enzyme and protein substances in your blood that may alter when liver damage is present.
Liver blood tests also measure the amount of bilirubin to gain an indication of your liver’s ability to metabolise and secrete it into bile. The ‘serum bilirubin test’ is considered to provide a very accurate picture of how well the liver is functioning.
Raised and heavily unconjugated bilirubin in your blood is abnormal. When this is the only abnormal result, it is seen as a strong indication that you may have GS. Bilirubin levels can, however, fluctuate in GS and it is possible that they can be within the normal range over a period of time.
Bilirubin is measured in micromoles per litre (umol/L).
Where jaundice is evident, medical staff may seek diagnosis by excluding more serious forms of liver disease. GS is one of the most common causes of unconjugated hyperbilirubinemia, but there are others. These include a rare and dangerous disorder called Crigler-Najjar syndrome which is inherited from the same gene.
If your diagnosis involves further testing or delay of some sort you may experience some anxiety before other possibilities can be ruled out.
For this reason it is important that doctors diagnose GS as soon as possible.
Other than inheriting the abnormal gene there are no known risk factors for developing GS. It is not related to any lifestyle habits or caused by any specific environment.
Your doctor should consider the effect of GS when prescribing medicines. Although it is uncommon, there is a possibility that lack of the UGT enzyme can have an effect on the way you respond to certain medications.
Having GS should not prevent you leading a normal life in any way.
There are a number of circumstances that are considered likely to cause your bilirubin levels to rise. Some of these cannot be helped but you might manage your situation better if you can avoid the following:
- dieting or fasting
- emotional stress or anxiety
- infectious illnesses
- heavy physical exertion that can leave you feeling drained
- lack of sleep.
Diet and nutrition
It is important to eat regularly and healthily, and drink plenty of water. Avoid crash diets or fasting as this may cause your bilirubin levels to rise. Dehydration can also have the same affect.
Some people with Gilbert’s syndrome experience abdominal discomfort after eating complex carbohydrates such as bread, pasta, rice and potatoes but generally people with this condition have no specific dietary difficulties or requirements.
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