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Gilbert's Syndrome- is it really as benign as we’re told?

Updated: Dec 3, 2021

Have you ever seen, or been told you have persistently elevated Bilirubin levels in your blood results? You could have a genetic condition called Gilbert's syndrome.

Gilbert's is a condition passed down in families that affects key liver detoxification enzymes (the glucuronidating enzymes). The main enzyme affected is UGT1A1, though others can be too, with some Gilbert's patients having up to 4 enzymes that may not be working at full function. UGT1A1 is responsible for detoxifying Bilirubin, making it water soluble and easier to excrete from the body. When this pathway is compromised (through reduced enzyme function with someone with Gilbert's) Bilirubin builds up in the body.

From the medical perspective Gilbert's is referred to as a benign condition with patients told there’s nothing to worry about and no real impact on their health. However, many of those with Gilbert's will say it feels anything but benign to them!

How could Gilbert's feel to me?

Whilst not everyone with Gilbert's syndrome experiences any problems (up to 10% really don’t notice any impact on their health), the majority of patients will experience some symptoms. This can vary in severity dependent on how many, and to what degree, their enzyme function is affected.

Gilbert's can have a big impact on gut health and mental health.

Common symptoms include gas, bloating, burping, queasiness, feeling full for a long time after meals or feeling that food sits heavily in the stomach. They may have an aversion to dense proteins and fats feeling these foods are hard to digest. Bowel motions may be affected too with constipation and/or diarrhea, perhaps paler stools, greasy stools and feeling like you can’t identify what is setting your gut symptoms off.

Food sensitivities, anxiety, depression and insomnia are also not uncommon for those with Gilbert's to experience.

In females, symptoms of oestrogen dominance may exist such as heavy menstrual bleeding, clotting, irregular or shorter cycles, weight gain, increased PMS symptoms, fibrocystic lumps in breasts, mood swings, decreased sex drive and bloating. This is because oestrogen is also cleared via the glucuronidation pathway affected in Gilbert's. Poor clearance of oestrogen leads to more build up in the body.

Those with Gilbert's are also known to have a predisposition to gallbladder sludge and a higher rate of gallbladder stones. They may also experience what is known as biliary colic or pain around the diaphragm area.

When this liver detoxification pathway is affected, patients can also have less tolerance for things that put pressure on this pathway. This includes certain over the counter and prescription medications such as paracetamol, NSAIDS and synthetic oestrogens (like the oral contraceptive pill or HRT). Not only can patients have increased sensitivity for these medications, but these medications can also further increase Bilirubin too.

How would I know if I have Gilbert’s syndrome?

It’s commonly under-diagnosed in adults. Many of my clients I suspect of having Gilbert's have either been told it's nothing to worry about or have never had their elevated Bilirubin levels mentioned at all.

It's usually determined through persistent, elevated levels of bilirubin in the blood when other blood tests and liver enzymes are normal. So it needs to be raised in multiple tests over time. We can then ask for a conjugated or direct bilirubin to be done for further clarification.

While there are genetic tests available too, they are rarely needed to confirm diagnosis and are quite pricey (and not covered by medicare). In fact the Royal College of Pathologists Australasia state that:

“If the diagnosis is uncertain the serum bilirubin fasting level can be measured and should exceed the non-fasting level by >50%.”

Can it be treated?

As Gilbert's is a genetic condition there is no “cure” as such. However, there are plenty of ways we can support someone who experiences this shift in their detox capacity to improve their handling and clearance, helping reduce the discomfort felt.

Stress, overexertion and fasting or going too long without eating can all bring on the symptoms of Gilbert's syndrome. So managing your stress levels and ensuring you eat regularly can help.

Dietary support though a high fibre diet can support clearance from the bowel and certain foods support liver detox pathways like cruciferous vegetable (broccoli, cauliflower, brussel sprouts and more). There are various nutrients and supplements I find supportive for my clients with Gilbert's but as each case varies, these need to be chosen with the individual in mind. Calcium-d-glucarate suits some, herbs to support liver and GB flow are helpful for others, broccoli sprout extracts and more are some of the options I consider as part of a comprehensive treatment plan.

So if you know you have Gilbert's, or think it might be a possibility for you, speak to your Naturopath or get in touch with me today to help you take the next steps.

It is not as benign as you've been told and there is plenty that is on offer to help manage it's impact on your life.

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