What symptoms to expect?
Gilbert’s Syndrome is a genetic condition that means you have less of an enzyme (called UGT) that works in your liver to help your body process chemicals. With less of this enzyme your body works a bit differently.
Read this post for the basic definition of Gilbert’s Syndrome : https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/
In a survey of people with Gilbert’s Syndrome (https://gilbertssyndrome.org.uk/gilberts-syndrome-symptoms-survey-results/) I found that the top symptoms were:
- tiredness (83%),
- brain fog (73%)
- anxiety (43%)
Other frequently mentioned symptoms include nausea, abdominal pain, feeling worse after drinking alcohol, or not being able to drink at all and itchy skin.
Some people are upset by the change in colour of their eyes or skin. I regularly hear requests for support from people who feel self conscious and anxious because their eyes are yellow most or all of the time.
WHY do I have these symptoms?
Toxins
Toxin is an overused word. Generally it’s something harmful to your body. It can be produced naturally or synthetically. In certain amounts it will be harmful, but may be fine in other amounts. Whether it is harmful depends on your body’s ability to process a toxin. With Gilbert’s Syndrome you are not able to process some things as well as other people.
We know that one of the main symptoms of Gilbert’s Syndrome is bilirubin in the bloodstream. Bilirubin (https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/bilirubin/) is a toxin which most people safely process. In Gilbert’s Syndrome bilirubin may build up to a mild level. It can be enough to cause jaundice (which may be more evident in thinner skin such as the eyes or face) and feelings of illness, including nausea and brain fog (unconjugated / unprocessed bilirubin can pass through the blood brain barrier).
Alcohol (https://gilbertssyndrome.org.uk/alcohol-and-gilberts-syndrome/)has been shown to increase levels of bilirubin and so add to the feelings of illness. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959903/) Alcohol is a toxin and can access most of your tissues, although it’s mainly processed in the liver.
Your liver can find it hard to process other chemicals too. This could lead to a build up of substances which may make you feel ill. These can include some medications, but also chemicals used in paints, fire retardant, cleaning products etc.
You may not realise you have been exposed to something that will trigger your symptoms until later, when you feel unwell, hungover, exhausted or nauseous. It may then take some time (hours or days) for you to recover as your body gets rid of the substance that has triggered your symptoms.
A ‘de-tox’ health warning
The fad of ‘de-tox’ diets is built on the idea that many things are ‘toxic’ and we need help to ‘cleanse’ our system. Don’t get sucked into this pseudo-science. It will not give you a quick fix. There are a wide variety of approaches sold to achieve this cleansing, and Harvard Health debunk a number (https://www.health.harvard.edu/staying-healthy/the-dubious-practice-of-detox) here.
The (https://www.nhs.uk/livewell/tiredness-and-fatigue/documents/truthdetoxdiets.pdf) NHS , (https://www.bda.uk.com/resource/detox-diets.html) British Dietetic Association, (https://www.webmd.com/diet/a-z/detox-diets) Webmd and others all agree that de-tox diets are unlikely to deliver on their promises. Indeed, in my opinion, and based on my research and experience, to suddenly have a restrictive diet will more likely trigger Gilbert’s Syndrome symptoms. Fasting in particular may trigger Gilbert’s Syndrome symptoms.
Stomach problems
People with Gilbert’s Syndrome also have significantly delayed gastric emptying according to research (https://pubmed.ncbi.nlm.nih.gov/11490829/) – that means, food takes longer to leave your stomach. This can add to the nausea, and cause stomach and abdominal discomfort, symptoms as well as acid reflux. It’s no wonder many of us are diagnosed with IBS. (https://gutscharity.org.uk/advice-and-information/conditions/irritable-bowel-syndrome/)
Anxiety
Delayed gastric emptying is also linked to anxiety. But this goes both ways. Anxiety can lead to delayed gastric emptying and other stomach problems. This study (https://journals.lww.com/md-journal/fulltext/2019/06210/effects_of_comfort_care_on_symptoms,_gastric.41.aspx) showed what happened when test subjects were give support in a number of ways – psychological, physical and, social, through nursing care. It provided support for physical symptoms as well as tactics for mental health. This resulted in significant improvement in gastric emptying, showing that looking after your mental health could help your stomach work better.
Fluctuating feeling of illness and other symptoms:
The enzyme we don’t have so much of needs a supply of sugar to work. If you eat a diet (https://gilbertssyndrome.org.uk/detox-diets-and-gilberts-syndrome/)that impacts on the highs and lows of your blood sugar, or you haven’t eaten for a while, you may feel worse. (One of the ways that Gilbert’s Syndrome is diagnosed is through elevated bilirubin levels after not eating for 24 hours.)
A lack of sleep may also impact your ability to control your blood sugar levels, as well as your liver function. Sleep is one of the most important health factors for anyone, and may have an impact on you especially if you have Gilbert’s Syndrome. Lack of sleep will potentially trigger Gilbert’s Syndrome symptoms. Prolonged lack of sleep can have major effects on your metabolism.
With the build up of bilirubin in your bloodstream you may have an increase in substances which will cause your skin to itch. (https://gilbertssyndrome.org.uk/itching-and-gilberts-syndrome-2/)
Symptoms seem to be linked to the build up of bilirubin, and possibly other toxins or chemicals in your bloodstream. This combines with problems such as your stomach working more slowly, and the nausea you feel which may be your body’s response to a build up of toxins. Altogether it adds up to the all too familiar feeling of being hungover on some days.
You might wonder if the symptoms you have are linked to your Gilbert’s Syndrome or are something else.
You can share your symptoms over on twitter: @GilbertsSyndrom where I update on the latest news, information, tips and stories on Gilbert’s Syndrome, and catch more posts over on instagram. You can also add to the survey on the website here: https://gilbertssyndrome.org.uk/gilberts-syndrome-symptoms-survey-results/
By sharing our symptoms we can all get a better understanding of how Gilbert’s Syndrome affects people.
It’s important to remember that many of these symptoms can relate to other illnesses. Don’t dismiss persistent feelings of being unwell as caused by one thing. You may have another illness or condition and it’s important to ensure you get support and treatment from your health professional.