Living With Gilbert’s Syndrome

What is Gilbert’s syndrome?

Gilbert disease is actually known as Gilbert’s syndrome in which a substance called bilirubin to build up in the blood with higher than normal level. It is indeed a genetic disorder that is hereditary and runs in families. The primary cause of Gilbert’s syndrome is owing to reduced activity of the particular enzyme and which make liver less competent of processing bilirubin. The reason for poor enzyme functioning is unknown but is hereditary. Thus, Gilbert’s syndrome is recognized as an inherited disorder.

Cause of Gilbert’s syndrome

The main Gilbert’s syndrome cause is a deficiency of enzymes known as UGT which is responsible for processing bilirubin in the liver. It is actually an abnormal gene which you get from your parents and causes Gilbert’s syndrome. Owing to this ineffective gene excess amount of bilirubin is build in your blood. The abnormal gene is the main cause of Gilbert’s syndrome is common. Though it is present by birth so could not noticed until puberty or later. Keep in mind that you can have an increased risk of Gilbert’s syndrome in case

  • You are male
  • Both your parents carry the abnormal gene that is the main cause of this disorder.


Gilbert syndrome diagnosis

Gilbert syndrome diagnosis can be done by using a blood test, by which levels of bilirubin can be detected. It also follows liver function test also by which it can be dig nosed that how well the liver is functioning. In some cases, a genetic test is also mandatory to diagnose Gilbert’s syndrome. In some cases Gilbert’s syndrome is very mild and which do not show any symptoms. It is diagnosed by chance at the time of blood test. Gilbert’s syndrome is very common, but the problem is that it is difficult to know how many people are affected as it does not show the same symptoms or cause obvious symptoms. It is mainly diagnosed during the teenage or early twenties. A blood test and a urine test are prescribed by the doctor to diagnose Gilbert’s syndrome. Raised bilirubin in your blood is abnormal. When your test shows this abnormal result, then it is an indication that you have Gilbert’s syndrome. Over a period of time, this bilirubin levels can fluctuate, and it is also possible that they can be within the normal range again.

Gilbert’s disease symptoms

People with Gilbert’s syndrome experience my mixed symptoms such as that of jaundice. The significant increase in bilirubin levels lead to Gilbert’s syndrome and which means jaundice.  As their skin goes yellow and eyes white due to build up of bilirubin in the blood. Some other Gilbert’s disease symptoms include

  • Feeling tired
  • Loss of appetite
  • Abdominal pain
  • Dizziness
  • Feeling sick
  • IBS, i.e., irritable bowel syndrome following cramps, bloating, constipation


One of the common symptoms experienced by people suffering from Gilbert’s syndrome is fatigue. People who experience Gilbert’s Syndrome symptoms find that there are some triggers that are linked with the condition such as being stressed, having surgery, being dehydrated fasting, physical exertions, lack of sleep, women having monthly periods. Thus, you should avoid known triggers to reduce the chances of episodes of jaundice.

Gilbert syndrome treatment or complications

In several cases, there is no need of treatment as there are no complications Gilbert’s syndrome patients face. If a person has major symptoms which comprise fatigue or nausea, then the doctor prescribed daily Phenobarbital to lessen the amount of bilirubin in the body. It is said that Gilbert syndrome treatment is not necessary as it is a mild disorder which does not need medical treatment. People who suffer from this disorder are leading normal and healthy lives. To help you keep maintain your bilirubin levels under control and try to avoid bouts of jaundice. People suffering from Gilbert’s syndrome should manage stress; avoid strict low-calorie diet by consuming healthy meals including vegetables as well as fruits.


Diet for Gilbert’s syndrome

Working for too long or remaining without food for too long can trigger Gilbert’s syndrome symptoms. Thus you should take care of your diet properly to avoid Gilbert’s syndrome. Despite the fact that there is no particular diet plan required for treatment of Gilbert’s syndrome, the most important thing is to eat regularly and should include healthy foods rich in nutrients for a healthy liver.  Keep in mind that to keep away from Gilbert’s syndrome alcohol should be avoided as it causes the raised level of bilirubin in people. For

Patients of Gilbert’s syndrome drugs should be avoided which inhibit UGT Enzyme. There are some lifestyle changes too which should be done to prevent Gilbert’s syndrome:

  • Try to sleep up to eight hours and follow a consistent routine.
  • Try to keep the periods of workout shorter and perform 30 minutes of moderate exercise daily.
  • Stay hydrated especially in hot weather, illness or at the time of exercise.
  • Eat a balanced diet and never try to skip meals ever. Also never follow any diet plan in which you have to follow fasting or eating small amounts.
  • For Gilbert’ syndrome alcohol is to be avoided, in case you need to drink then consider limiting yourself.

Living with Gilbert’s syndrome

Gilbert’s syndrome is a lifelong disorder which does not need any treatment as it does not pose any kind of threat to health. If you suffer from Gilbert’s syndrome, the thing you have to do is that avoid the things which trigger jaundice like stress or dehydration.  If you are suffering from Gilbert’s syndrome then it means that you have a trouble with your liver. You might have at threat of developing jaundice or else any other side effects after having medications. Thus consult a doctor before taking any kind of medications and let doctor known that you have Gilbert’s syndrome before treatment. Many medications or drugs for Gilbert’s syndrome suffers should avoid. So take proper care of it.

Gilbert’s syndrome is a harmless condition and did not need treatment. In case you have notice Gilbert’s syndrome symptoms then start making above lifestyle changes, and you will see the change.

This past year I was diagnosed with Gilbert’s Syndrome (pronounced ’zheel-BAYR’) thorugh an enhanced blood test.  Gilbert’s syndrome is a common, mild liver disorder in which the liver doesn’t properly process a substance called bilirubin (pronounced ‘billy-roo-ben’). Bilirubin is produced by the breakdown of red blood cells. If you have Gilbert syndrome, you have inherited an abnormal gene that controls the enzyme that helps break down bilirubin. Getting the disorder isn’t related to lifestyle habits or environment.

Also known as constitutional hepatic dysfunction, unconjugated benign bilirubinemia and familial nonhemolytic jaundice, Gilbert’s syndrome typically doesn’t require treatment or pose serious complications. Gilbert’s syndrome was first described by French gastroenterologist Augustin Nicolas Gilbert (1958-1927) and colleagues in 1901.

In fact, Gilbert’s syndrome is usually not considered a disease because of its benign nature. You most often find out you have the disorder by accident, when you have a blood test that shows elevated bilirubin levels.  That is how I found out I had it.  Earlier this year I had an extensive blood test and my doctor noticed my elevated bilirubin levels.  I even took another blood test the following week to confirm.  Levels of bilirubin in Gilbert’s syndrome patients is reported to be from 1.2 to 5.3 mg/dL.  My bilirubin level was 3.5.

Gilbert syndrome affects 3 percent to 7 percent of the U.S. population. Worldwide estimations vary, and no good measure exists. More males than females have the condition.


jaundice from Gilbert's syndromeFrom

Most people who are affected don’t know it. They have no signs whatsoever.  Levels of bilirubin usually stay within normal levels, and occasionally rise slightly.

Jaundice – there may be a yellow tinge to the whites of the eyes and the skin when bilirubin levels go up too high. Symptoms may become more obvious as a result of:

  • Illness
  • Infection
  • Dehydration
  • Stress
  • Menstruation
  • Fasting and skipping meals
  • Overdoing things (overexertion)

Although bilirubin levels hardly ever reach dangerous levels, the resulting jaundice can be disturbing. Jaundice symptoms usually appear in the eyes first, and then the skin if bilirubin levels rise further.

The following symptoms may also be possible, but less common:

  • Loss of appetite
  • Nausea
  • Fatigue
  • Weakness
  • Abdominal pain

Notable people with Gilbert’s syndrome:

Napoleon Bonaparte – was a military and political leader of France whose actions shaped European politics in the early 19th century.

Arthur Kornberg – Nobel laureate in Physiology or Medicine in 1959

Nicky Wire – ‘Manic Street Preachers’ bassist

Sándor Petőfi – Hungarian poet


Luckily for me, as of now my bilirubin level is not high enough to see signs of it. My doctor says that the syndrome is genetic and not to fear because my other blood test numbers (liver, kidneys and gal bladder) are fine, so not to worry. Just to live life as I was doing so and just to let other medical professionals know when needed.

I was not too happy when I found out that I had Gilbert’s syndrome. I mean I’m just now 40 and I am already taking medication for high blood pressure, for crying out loud!  However, after learning more about Gilbert’s syndrome, I calmed down. Gilbert syndrome can cause episodes of jaundice, but the jaundice is usually mild and goes away on its own. There are no other known complications of the condition, and it won’t damage your liver. I’m glad I don’t have to take yet another pill each day. I’m taking enough as it is.

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1 Comment

  1. I am 35 and been off ill from work with Nausea which can’t be attributed to stress and I have been through a battery of tests including bloods, camera down throat and I have a scheduled Ultrasound coming up.

    Saw a Dr at my clinic and they noted that I had high levels of bilirubin and I have another blood test to do next week to deep dive into liver function. It wasn’t easy to hear that I could potentially have a life long illness with no real treatment or cure.

    I can fully understand how you are feeling, I have told my fiancee of the potential diagnosis and that when we start a family that will have to be considered now.

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