Gilbert’s Syndrome and Caffeine

What does caffeine do for the liver, and what is the relationship between Gilbert’s Syndrome and caffeine? Many studies now combine to illustrate the positive effects of caffeine on a number of aspects of health and wellbeing.

You can help reveal the impact of caffeine on people with Gilbert’s Syndrome. Get a free download here and answer a handful of questions – it will take less than 5 minutes, and you could help us all live better with Gilbert’s Syndrome. Thank you!

Naturally, it’s not a simple picture.  Everyone has a different genetic and metabolic profile (we’re all made differently!). Each individual has a unique way of processing any chemical or food. This can also be impacted by your lifestyle, age and even time of the month. My goal is to help you personalise your nutrition so that you can take the research, advice and your experience and see what works best for you.  

I’ve been through the research and summarize and link to it below. This post also gives you the benefit of looking through the science as it relates to Gilbert’s Syndrome, but ultimately – I am not a doctor, I am not YOUR doctor, and the best expert on you – is YOU. 

That said, let’s look at liver health and caffeine, and particularly Gilbert’s Syndrome and caffeine

As Professor Graeme Alexander President, British Association for the Study of the Liver Consultant Hepatologist at Cambridge University Hospitals and The Royal Free Hospital, London said, in a study published by the British Liver Trust in 2016, “At last, liver physicians have found a lifestyle habit that is good for your liver!’

The report pulls together studies that look at liver diseases which are developed or acquired, not genetic conditions that impact the liver, like Gilbert’s Syndrome. However, it’s worth looking at the conclusions and the basis of the studies to see what we can draw from those. 

The bottom line is that it appears caffeine can slow disease progression, help prevent liver cancer and support the anti-viral functions of the liver. 

Other conditions also show a beneficial impact, such as diabetes and stroke. 

‘eighteen studies involving almost half a million people that show overall that coffee, decaffeinated coffee and tea do slightly reduce risk of diabetes.’

One stunning assertion from a study in the report showed that :

‘Coffee appears to have a significant effect on all-cause mortality. The National Institutes of HealthAmerican Association of Retired Persons Diet and Health Study involving 229,119 men and 173,141 women demonstrated an inverse relationship between coffee consumption and mortality. In other words, coffee drinkers had a reduction in mortality compared with non-coffee drinkers.’

Any old caffeine? 

Some of the questions raised include the benefits of tea (or other caffeinated beverages) versus coffee. It appears that coffee itself contains beneficial compounds (particularly those found in the green beans) that other caffeinated drinks do not. And that decaffeinated coffee can have some benefits associated with coffee drinking. 

How much should I drink?

Rightly cautious advice about drinking too much coffee or consuming too much caffeine is flagged. Too much caffeine can have an adverse effect on other conditions, from pregnancy to conditions where medication might be impacted. The difference between men and women is only really significant if you are taking hormonal supplements or, as mentioned, you are pregnant. A moderate 2 to 3 cups a day is suggested by the report authors. 

One factoid of interest – caffeine metabolisation is twice as fast in smokers as non-smokers.

Coffee Caution

Everybody reacts differently to substances and caffeine is itself quite a powerful stimulant. If you have anxiety or depression then do NOT suddenly start drinking lots of coffee! It raises levels of stress hormones adrenaline and cortisol. Plus, it can raise blood pressure. 

Although coffee can enhance energy and alertness, it can also trigger certain conditions, and decaffeinated coffee might provide some benefits without the downsides for people who react strongly to caffeine. However, as noted in Medical News Today In 2013, a study published in World Journal of Biological Psychiatry suggested that drinking between 2–4 cups of coffee a day may reduce suicide risk in adults.

Caffeine is in fact a psychoactive substance and should not be overused. Most studies suggest that more than 400mg of caffeine a day could have adverse effects (probably more than 4 cups of coffee). Plus, as well as the caution for pregnant women, there is a lack of information about how it can impact the growing, changing and susceptible brains of children and adolescents. 

If you would like to read the studies and explore the associated articles on this, then do read the report.

You can also watch this video from Dr Greger at nutrition facts (buy his excellent book ‘How Not to Die’ which looks at many health conditions and how to optimise your diet to live longer and better).

Dr Greger rightly raises the fact that people metabolise coffee / caffeine very differently. This different metabolisation can result in very different responses, harms and benefits. 

Gilbert’s Syndrome and Caffeine

In the catchily titled piece of scientific research: Caffeine Clearance in Subjects With Constitutional Unconjugated Hyperbilirubinemia

The abstract concludes: ‘CAF altered kinetics in 27% of GS cases may suggest multiple deficits in the hepatocellular metabolism, thus confirming the heterogeneity of this syndrome.’

Ie. caffeine altered the reaction rates in 27% of Gilbert’s Syndrome cases, suggesting that the liver wasn’t processing as well, demonstrating (once again) that Gilbert’s Syndrome has different elements or characteristics. 

(It didn’t seem to impact bilirubin levels or bile acids, though.)

As with many studies into Gilbert’s Syndrome, the conclusions note that there are in fact differences in how our livers process things. But, as is so often the case, this is not taken further, to examine just what that means to the lifestyle management for someone with Gilbert’s Syndrome. 

The implication here is that people with Gilbert’s Syndrome might find coffee or caffeine impacts them negatively, and I’ve written elsewhere how coffee or caffeine can impact energy levels in a way that you may find unhelpful. Stable energy levels and blood sugar are important for the liver enzymes we are deficient in to work properly. We can also experience anxiety as a symptom. These both suggest we would need to be careful around our coffee / caffeine consumption. 

Of course, energy levels can also be an issue if you have Gilbert’s Syndrome. Fatigue is a common symptom of Gilbert’s Syndrome. It would be great to be able to reach for caffeine as a pick me up, to break through that brain fog and boost your concentration!

What caffeine to try when you have Gilbert’s Syndrome

If you want to try caffeine in a different format to coffee, there are additional benefits in trying something like green tea, which has other beneficial effects. Clipper produce an organic and ethically traded tea that you can buy online or in many large supermarkets

Another option is a green coffee bean supplement

If you want to explore alternatives to coffee then there are other natural stimulants which are more gentle which may help with your energy levels. I take adaptogens to balance my stress and energy levels and have found my energy more resilient as a result.

This Rhodiola from Viridian has been a daily staple for me for many years

Ashwagandha is a great herb for the end of the day.

plus gotu kola which can provide an extra, but gentle, boost that can help concentration levels when they start to flag

I personally find coffee or caffeine makes me feel quite unwell. I don’t seem to metabolise it comfortably and it leaves me feeling frazzled and sick. I’d love to hear more about whether you find coffee or caffeine helps you, and what your experiences are with it. Please do comment and share your story here. 

This website is dedicated to helping people like you live better with Gilbert’s Syndrome, I hope you find the information interesting and useful – if you do, please consider donating to keep it going. Because so many people struggle to find help and support to live with Gilbert’s Syndrome, please donate today – THANK YOU!

6 Replies to “Gilbert’s Syndrome and Caffeine”

  1. I was also recently diagnosed with gilberts syndrome by a gastroentenologist after struggling with my symptoms of fatigue, nausea, brain fog, headaches, abdominal cramps, and more. I for one dont drink coffe and instead have an energy drink, with 150-300mg of caffeine, which I find helps clear my brainfog and slightly aleeviates the headace so i can focus. As a note I usually only drink one full can or maybe half depending on my work load, and how my stomach is as I also have irritable bowel syndrome. I have cut back on other sources of caffeine though mainly drinking water and gatorade to stay hydrated and have electrolytes to balance it which I find helps alot.

    1. Hi Tristan, that’s really interesting to hear. Caffeine is said to be a trigger for certain types of IBS and it’s good to hear you are listening to your body when deciding what you can tolerate.

  2. Don’t overlook the effects of coffee independent of caffeine.

    A study by Kalthoff et al. in Gastroenterology, showed: “Incubation of cells with coffee induced transcription of UGT1A1 (5.4-fold), UGT1A3 (5.2-fold), UGT1A4 (4.8-fold), UGT1A7 (6.2-fold), UGT1A8 (5.2-fold), UGT1A9 (3.5-fold), and UGT1A10 (6.1-fold). Induction was independent of caffeine, methylxanthines, or the diterpenes cafestol and kahweol.”

    This suggests decaffeinated coffee would be beneficial for someone with gilberts.

  3. Hi. I’m in my early 70s and was diagnosed with GS at 15. So I’ve been observing and living with it a long time. I’ve also had to look after my health so I’m in pretty good shape, touch wood. But I have the fatigue, some digestive issues, etc. As to coffee, I love it as a lifter of brain fog but when it started keeping me awake 30 years ago, I limited myself to one cup a day. Eventually though, even if I drank that at 9.30am, I’d be wide awake until 4am the next day! So I finally gave up on it 5 years ago. Now I take Magnesium Threonate every morning and that has the same effect (though not the lovely taste).

  4. At the age of 22 I was diagnosed with Gilbert’s. I say diagnosed – a doctor left a voicemail saying ‘sorry, we can’t understand why you’re always feeling faint, tired, why you can’t handle caffeine or why hangovers almost kill you BUT your bilirubin is a strange level so it might be Gilbert’s. Take care!’ And dismissed me. I’ve never been offered a follow up or any kind of advice.

    I now live within the means of a Gilbert’s sufferer.

    For years prior to diagnosis, I drank coffee and tea. A lot. I used to work 16 hour shifts at the age of sixteen in a hotel as a waitress/events assistant/slave, and coffee would be my breakfast and my continuum through the day. I’m talking 6 cups a day, and several cups of tea throughout. After a few years I found I was growing tired after a coffee.. yes okay factor in the inhumane shifts, bone tiring roles of my job alongside a college course and you’d make excuses but I was starting to notice after a cup of coffee I was tired, and I’d feel faint. Not just faint, but weak, shaken as if I hadn’t eaten (I have a low BMI but eat ALOT). After my diagnosis I cut out caffeine other than my jägerbombs or vodka Diet Coke on a night out – because at that point I was drunk so the effects of the caffeine didn’t touch me. Low and behold… no more feeling faint (other than the exhaustion).

    Now, at 27, after a baby and living without caffeine… I can’t even have a vodka Diet Coke without it sapping my energy. I cannot get ‘Merry’ because after 1 or 2 my blood sugar crashes, I can barely function and I feel starved of all energy.

    The older I get, the worse it is so now I’ve decided to cut out caffeine in it’s entirety, and the next phase is to try and manage alcohol with Gilbert’s.

    Hangovers are something else entirely. I am safe – on a night out I tend to stick to the same poison, I don’t mix my drinks and I always drink 2 pints of water before bed at least. It doesn’t help. As the day goes on, I begin to feel worse. I feel weak. I can’t breathe. I go faint and it takes a whole lot of grounding to pull myself out of an ‘episode’. It comes out of nowhere. I can feel fine then whoosh, I can’t breathe and I go weak and tingly and faint. I have a panic attack. I feel horrific. This goes on 2-3 times throughout the day. By bed time, I’m usually feeling a little better. Then I wake up the next day and it continues. People tell me this is normal.. I’ve always known my hangovers are not normal.

    One thing I do know is Gilbert’s is so terribly underrepresented and the lack of research around it is worrying. I often refer to it as ‘the illness doctors can’t be arsed investigating so they made a strange name for it and fobbed me off with’. Because let’s face it – any doctor I’ve mentioned it to has said ‘what syndrome?!’ And had to google it. When I went into labour I mentioned I could potentially have it and they said ‘oh so that might change the reading on your protein in your blood and present as pre-eclampsia’.

    I get the yellow eyes. I can’t gain weight to save my life. I’m always hungry. I don’t ever have any energy. I can’t tolerate caffeine. I have mood swings. I have severe anxiety. I get episodes of feeling faint almost weekly. I’m constantly tired. I’ve been tested for b12, anemia, vitamin d, all deficiencies and blood levels and sugar levels. I can’t exercise as it makes me feel weak and sick. Brain fog is constant. It’s exhausting.

    1. Hi Shannon, thank you so much for sharing your story – so many people with Gilbert’s Syndrome will recognise what you are going through. Doctors are so dismissive and yet Gilbert’s Syndrome can really affect quality of life. I hope some of the stories, tips and information here and coming along in the future, as we learn more, will help you. Take care!

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