Gilbert’s Syndrome and Heart Disease

Gilbert’s Syndrome protects against the leading cause of death globally. 

Here’s reason to celebrate for people with Gilbert’s Syndrome! One benefit of this genetic enzyme deficiency is a reduction in heart and cardiovascular problems. Heart disease is responsible for a third of deaths globally and rates are increasing.

For decades studies have shown that Gilbert’s Syndrome provides some protection from heart disease.  Recent  studies looking at differences for different populations. These validate the finding of reduced heart disease in those with consistently raised bilirubin levels and look deeper at other factors. 

Here you can find out more about why. Plus – why it doesn’t pay to think this means you can indulge in an unhealthy lifestyle. 

Why does Gilbert’s Syndrome protect people against death related to heart disease?

According to research, people with consistently higher levels of bilirubin in their blood lay down less fat in arteries. They are less likely to have thrombosis, and may have lower blood pressure. 

Raised levels of bilirubin in the bloodstream is one symptom of Gilbert’s Syndrome. Find out more here: https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/bilirubin/  . The enzyme people with Gilbert’s Syndrome are deficient in processes bilirubin, as well as other things in the body. This means we’ve got more bilirubin hanging around in our blood than most people. 

This study from 2002 https://pubmed.ncbi.nlm.nih.gov/11849670/ proposes that bilirubin acts as an antioxidant and protects arteries. This 2017 research discusses similarly how bilirubin levels in Gilbert’s Syndrome can reduce the levels of fats in arteries https://pubmed.ncbi.nlm.nih.gov/28300459/ . This 2013 published study notes that people with GS have less fat in their bodies more generally, as well as laid down in their arteries! https://pubmed.ncbi.nlm.nih.gov/23201182/ Thrombosis is less likely with raised bilirubin levels. 

This piece from 2018 https://journals.physiology.org/doi/full/10.1152/ajpheart.00417.2017 shows that aerobic exercise raises bilirubin levels. Athletes may have continuously raised bilirubin levels due to the regularity of their exercise. https://journals.physiology.org/doi/full/10.1152/ajpheart.00417.2017 : People with Gilbert’s Syndrome and people who exercise experience the benefits of raised bilirubin levels on their cardiovascular health. Higher bilirubin levels are also linked to lower systolic blood pressure measurements. 

How amazing is this!

‘Mildly elevated total bilirubin is consistently associated with reduced incidence of all-cause mortality (34). Remarkably, GS approximately halves all-cause mortality compared with normobilirubinemic controls (33).’

Does this mean people with Gilbert’s Syndrome live longer?

Well, it’s more complicated than that as this article attempts to explain. In short, there’s no evidence that is the case. If you read through the article you can also read more about the potential link of GS with UTI’s, gastric delayed emptying and issues with certain medications. 

https://academic.oup.com/ehjopen/article/3/3/oead059/7193306

This most recent research goes through other studies on millions of individuals. Excitingly it brings together a wide range of data to draw from, making it more robust than those studies observing far fewer individuals. 

‘We report significant findings: (i) White individuals with GS consistently exhibited protective effect as they aged, and furthermore its magnitude increased with age (due to small sample sizes, we could not determine this effect in Black subgroups); and (ii) mean total bilirubin remained constant despite increase in protective effect magnitude with age.’ 

(Although the effect was less in women than in men. )

I can just put my feet up and eat fast food then?

So, it looks like people with Gilbert’s Syndrome are less likely to have cardiovascular (CVD) disease. However, I know people with Gilbert’s Syndrome and who have had cardiovascular problems. Just because there is increased protection does not mean you are completely protected. We’re less likely to die a death related to CVD, but we may experience angina, or heart attacks etc. This means we may need to be prescribed drugs like statins. It’s important to know that such drugs need to be monitored, as they aren’t well processed by people with Gilbert’s Syndrome.

The UK’s National Institute for Health and Care Excellence, which is the body that prescribes how our health services standards should function, says of Gilbert’s Syndrome and statins: 

  • Be aware that certain drugs should be used with caution in people with Gilbert’s syndrome.
    • Gemfibrozil — inhibits uridine diphosphate (UDP)-glucuronyl transferase, the enzyme responsible for conjugation, and can cause variable hyperbilirubinaemia and jaundice.
    • Statin — people with Gilbert’s syndrome may have an increased risk of statin intolerance and should be monitored more closely while taking them. 
    • Gemfibrozil plus a statin — concurrent treatment with gemfibrozil plus a statin is contraindicated in all people due to an increased risk of myopathy.
      • In people with Gilbert’s syndrome, this interaction is further accentuated as glucuronidation is an important pathway for the metabolism of some statins and that pathway is compromised in people with Gilbert’s syndrome.
      • Simvastatin, atorvastatin, and rosuvastatin are only partially metabolized by UDP-glucuronyl transferase, but when combined with gemfibrozil, there is an increased risk of drug toxicity, including myositis.
      • If concurrent treatment with a fibrate and a statin is required, fenofibrate is a safer option than gemfibrozil but should still be used with caution.

https://cks.nice.org.uk/topics/gilberts-syndrome/management/management/

Finally – if you want to live a healthy happy life with Gilbert’s Syndrome, then your lifestyle is less likely to cause you heart disease. Eating plenty of fruit and veg for lots of fibre, vitamins and minerals, low fat wholegrains to balance your blood sugar, nuts, seeds, soya protein, broccoli and lots of other good things (find out more here https://gilbertssyndrome.org.uk/the-liver-diet/  ) will ensure you maximise your heart health. This is important due to the issues with prescribing cholesterol lowering medication. 

With the sort of lifestyle that ensures you maintain optimum health with Gilbert’s Syndrome, you’ll be even more protected against the world’s biggest killer. 

Are you more likely to get cancer if you have Gilbert’s Syndrome?

woman looking into a microscope while seated at a desk

Please note that I am not medically qualified. If you have concerns about your health you should seek advice from a medically qualified professional. The information provided is based on publicly available sources, and is no substitute for personal healthcare. It is important to understand that there is much more research needed into Gilbert’s Syndrome, and no single study is definitive. 

Summary

  • If you have Gilbert’s Syndrome your UGT1A1 gene and enzyme are affected. It is not proven, but some think that this may also reduce your ability to deal with cancer causing toxins and hormones as well as drugs which treat cancer.
  • Depending on your heritage you may have different variations of the Gilbert’s Syndrome gene.
  • The gene variant most commonly causing Gilbert’s Syndrome has been linked to colorectal and lung cancer, and oestrogen which may affect breast cancer. 
  • However, there are no proven direct links to Gilbert’s Syndrome and getting cancer
  • This gene is one small part of a very complicated puzzle. There are many other factors in the development of cancer. These include your environment, diet, health, gender, age, background, and many other genes. 
  • It would take a great deal more research to prove a clear risk. 
  • What can you do to ensure you reduce your cancer risk? A healthy lifestyle is the best way to reduce your risk of cancer. A diet that focuses on plants, regular moderate exercise such as walking in nature, a resilient mindset, good sleep and social networks all help reduce your risk.

Read on to find out more…

The gene that is thought to increase risk of cancer. 

Gilbert’s Syndrome is caused by a variation in your genes. The gene usually responsible is the UGT1A1*28 variant. This means you have 30% to 40%  less of an enzyme that processes bilirubin and certain toxins in your body. There are other variants that have been found to cause Gilbert’s Syndrome, such as UGT1A1*1, *6 and *36. These other variants are often linked to your heritage.

You can read more about the differences in some of the papers below

UGT1A1 is the only enzyme that can glucuronidate bilirubin.

When it comes to the relationship between the UGT1A1 enzyme, carcinogens (cancer-causing substances), and cancer risk, research has mainly looked at the enzyme’s role in metabolising certain drugs and toxins. Some carcinogens and toxins are processed by UGT1A1 through ‘glucuronidation‘, which helps your body get rid of them.

The role of UGT1A1 and its genetic variants to specific types of cancer can vary. Some studies have explored the link between UGT1A1*28 and certain types of cancer, such as colorectal cancer and lung cancer. The thinking behind these studies is that reduced UGT1A1 activity could affect the body’s ability to metabolise and eliminate certain carcinogens. It is thought that this potentially increases cancer risk. However, the results have been mixed and not always consistent across different populations and studies.

Digging deeper into the science

A number of case-control studies have investigated the thinking that the gene could be linked to cancer. These studies identified lots of different UGT variations in UGT1A and UGT2B genes as genetic risk factors for a wide variety of cancers. These include bladder, breast, colorectal, endometrial, esophageal, head and neck, liver, lung, prostate, and thyroid. These UGT variations may be cancer causing, or be linked to other UGT genes or neighbouring genes. https://pubmed.ncbi.nlm.nih.gov/26828111/

As recently reviewed [37], case-control studies have shown that a large number of genetic polymorphisms of UGT genes are associated with cancer development and progression. This is believed to be related to the critical roles of UGT enzymes in the systemic metabolism and clearance of carcinogens, cancer-modulating molecules, and anticancer drugs.’

https://www.mdpi.com/2072-6694/13/17/4491/htm

Here are some of the studies looking into the link between the gene and cancer.

  • This study looked at the impact on breast cancer https://pubmed.ncbi.nlm.nih.gov/15111762/ ‘When stratified by age, carrying the *28 allele was associated with an increased risk of breast cancer among women aged less than 40 years (odds ratio [OR] = 1.7; 95% CI = 1.0-2.7) but not among women 40 years old and over (OR = 0.8; 0.7-1.1).’
  • Studies suggest that when people with this variant eat food containing cancer-causing chemicals, such as well-done red meat, less of the cancer-causing chemicals from the meat get deactivated [78].
  • A study in 765 people found that having two copies of UGT1A1*28 was associated with higher odds of having lung cancer [79].
  • Similar associations have been found for UGT1A1*28 and breast cancer (240 and 2130 subjects), and colon cancer (168 subjects) [80, 81, 82].

Conclusion

It’s important to note that cancer is a disease influenced by a combination of genetic, environmental, and lifestyle factors. While the UGT1A1 enzyme’s role in metabolising carcinogens is relevant, it’s only one piece of the complex puzzle of cancer development. If you have concerns about your cancer risk you must consult with a healthcare professional. They can provide personalised guidance based on your medical history, genetic profile, and other risk factors.

How to reduce your cancer risk

You can’t reliably prevent yourself from getting cancer. But you can certainly reduce your risk considerably. Here are the top things you can do that are also great for you if you have Gilbert’s Syndrome = a win win!

If you need a health coach to help you achieve a healthy happy life with Gilbert’s Syndrome you can find out more here.

Calcium-D-glucarate helps fight Gilbert’s Syndrome symptoms

Studies show that Calcium-D-glucarate may help fight Gilbert’s Syndrome symptoms. Here I unpack what it is and what it could do for people with Gilbert’s Syndrome. 

What is Calcium-D-glucarate?

Calcium-D-glucarate is naturally found in fruits and vegetables. It’s a combination of calcium with glucaric acid, and is similar to glucaric acid which is found in the body. It is commonly used as a dietary supplement due to its potential health benefits. 

What does Calcium-D-glucarate do and why does it help fight Gilbert’s Syndrome symptoms?

Some studies show that Calcium-D-glucarate may have a positive effect on liver health and bile metabolism. It is believed that Calcium-D-glucarate may improve the detoxification process in the liver by increasing the excretion of certain toxins. Importantly for people with Gilbert’s Syndrome this includes bilirubin.

How does Calcium-D-glucarate help fight Gilbert’s Syndrome symptoms?

It’s thought that Calcium-D-glucarate stops an enzyme called beta-glucuronidase. This enzyme is responsible for breaking the bond between glucuronic acid and toxins. This lets them be reabsorbed into the body instead of being eliminated. This means that by stopping beta-glucuronidase from working as well, Calcium-D-glucarate may help prevent the reabsorption of bilirubin and other toxins.

Here’s what happens in your body in medical terms: 

Beta-glucuronidase is an enzyme that plays a role in the breakdown of bilirubin in the intestines. It acts by deconjugating bilirubin, converting it back into its unconjugated form, which is less water-soluble. Normally, bilirubin that has been conjugated by UGT1A1 in the liver is excreted into the intestines, where it is further metabolised and eliminated from the body. However, in individuals with Gilbert’s syndrome, the reduced UGT1A1 activity leads to impaired bilirubin conjugation. The presence of beta-glucuronidase in the intestines can cause an increased release of unconjugated bilirubin.

The increased activity of beta-glucuronidase can contribute to higher levels of unconjugated bilirubin. This makes the symptoms of Gilbert’s syndrome worse.

Here’s what this means in ordinary words-

Calcium-D-glucurate gets in the way of chemicals that increase bilirubin and so you can deal with it more easily, if you have Gilbert’s Syndrome. 

Be cautious!

It is always important to note that the available research on Calcium-D-glucarate’s effect on bilirubin is limited. More studies are needed to establish how well it works in reducing Gilbert’s Syndrome symptoms. 

Is it the right supplement for you?

Don’t forget – everyone responds differently to supplements too. You might have other conditions that mean that Calcium-D-glucarate isn’t right for you. It does other things, such as affect estrogen levels and some suggest its use for hormone related conditions :https://drbrighten.com/benefits-of-calcium-d-glucarate/. Make sure you check with your Doctor before taking it as it could affect other medications. 

You can increase your levels of the glucaric acid element by eating more apples, oranges, broccoli, cauliflower and cabbage. 

You can also decrease the beta-glucuronidase that may be worsening your symptoms by eating a healthy low fat diet, that includes plenty of fresh fruit and veg. Reducing smoking, alcohol and sugar may also help. Want to find out more about how your diet can help you live a happier life with Gilbert’s Syndrome? Check out this post https://gilbertssyndrome.org.uk/the-liver-diet/ You can find out more about food and nutrition to help with Gilbert’s Syndrome in the Posts ‘diet’ category here https://gilbertssyndrome.org.uk/category/diet/

If you decide you want to get a supplement, try this one. It has good reviews, although badged as for women due to its impact on hormones – you don’t have to be a woman to take it of course.

Want more help?

You can work with me as a health coach to support you in managing your Gilbert’s Syndrome symptoms and improving your wellbeing. Find out more here https://wellandgoodlife.co.uk/

You can also take the Gilbert’s Syndrome Essentials course which gives you all the basics on Gilbert’s Syndrome and how to manage the top symptoms. Find out more here https://wellandgoodlife.co.uk/uncategorized/essentials-of-gilberts-syndrome-course/

So, it sounds like Calcium-D-glucarate just might have a positive impact on bilirubin levels by potentially enhancing the liver’s detoxification processes. However, further research is needed to fully understand its effects, and it is advisable to consult a healthcare professional for personalised advice if you plan to take a supplement. 

You can find out more here

https://www.webmd.com/vitamins/ai/ingredientmono-136/calcium-d-glucarate

Gilbert’s Syndrome and Gallstones Linked

Introduction:

Did you know that Gilbert’s Syndrome and gallstones are linked? Studies show that people with Gilbert’s Syndrome have a higher risk of developing gallstones. Let’s reveal the details and what it means for people diagnosed with Gilbert’s Syndrome.

Bilirubin Imbalance:

In Gilbert’s Syndrome, there is an imbalance in bilirubin levels, which may promote the formation of gallstones over time. (Find out more about Bilirubin and Gilbert’s Syndrome here)

Bilirubin and Gallstone Formation:

Bilirubin, the substance processed by the liver, plays a role in the formation of gallstones. High levels of bilirubin can contribute to the development of cholesterol-based stones.

Understanding Gallstones:

Gallstones are hard deposits that form in the gallbladder, a small organ responsible for storing bile. They can cause pain and other complications if they block the bile ducts.

Here’s a link to more information about gallstones. https://www.webmd.com/digestive-disorders/gallstones

Consulting a Healthcare Professional:

If you have Gilbert’s Syndrome or suspect you may have gallstones, it’s crucial to consult with a healthcare professional. They can provide personalized advice and guidance.

Study Findings:

Researchers discovered that individuals with Gilbert’s Syndrome are more prone to gallstone formation.

Gallstone-related Complications:

Those with the syndrome may face challenges such as frequent gallbladder operations due to issues with their bile ducts.

The Link to Gallstones:

The study established a direct connection between Gilbert’s Syndrome and an increased likelihood of gallstones.

Bile Duct Operations:

People with the syndrome may require surgeries on their bile ducts due to gallstone-related complications.

Implications for Patients:

These findings highlight the importance of monitoring gallstone risk in individuals with Gilbert’s Syndrome.

Proactive Healthcare Approach:

Doctors should be vigilant in assessing and managing the gallstone risk in patients with this syndrome.

Better Treatment Strategies:

Understanding this link enables medical professionals to develop more effective treatment plans for patients with Gilbert’s Syndrome.

Conclusion:

The study confirmed the higher susceptibility of individuals with Gilbert’s Syndrome to develop gallstones, emphasizing the need for proactive healthcare and tailored treatment strategies to mitigate potential complications.

Managing the Risk:

If you have Gilbert’s Syndrome you can reduce your risk of developing gallstones by adopting a healthy lifestyle, including regular exercise and a balanced diet low in saturated fats. (Find out more about diet and Gilbert’s Syndrome here: )

(Source: Link to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6286431/#:~:text=Individuals%20with%20Gilbert’s%20syndrome%20also,operations%20on%20their%20bile%20ducts.)

Banish your Gilbert’s Syndrome Brain Fog

Here you’ll find out what brain fog is and its causes. Why is brain fog a Gilbert’s Syndrome symptom? How you can banish brain fog with short, medium and long term tactics. I’ll also signpost you to more help if you need it. Read on!

What is brain fog

‘Brain fog’ describes a collection of different sensations that you feel in your head. Feeling fuzzy or that your thinking is unclear; inability to collect your words and express yourself clearly and concisely; losing the thread of your thoughts; forgetting something a moment after having thought it; disorientation or even dizziness; being easily distracted; a feeling of fatigue or tiredness that isn’t in your muscles.

There are many reasons you might have brain fog

Common causes of brain fog

  • Vitamin deficiency such as Vitamin D or B12, or lacking iron. 
  • Hormonal changes such as during puberty, the menstrual cycle, pregnancy or menopause. 
  • Low blood pressure.
  • Long term poor sleep quality.
  • Long term stress or depression.
  • Mental health conditions or neurodiversities such as schizophrenia or ADHD
  • Caffeine withdrawal. 
  • Alcohol dependency
  • Medication, including antihistamines or other over the counter meds such as cold remedies, as well as prescribed medications or medical treatments such as for pain or cancer. 
  • Medical conditions such as hypermobility, chronic fatigue, diabetes, multiple sclerosis, thyroid problems, Gilbert’s Syndrome and many more. 
  • Shift work.
  • Allergies or sensitivities to particular foods.
  • Environmental toxins and chemicals.
  • Trauma.

Why would Gilbert’s Syndrome in particular cause brain fog? 

There’s no definite reason we have brain fog with Gilbert’s Syndrome, but it is a recognised symptom. Let’s take a look at some pieces of scientific research examining bilirubin as a neurotoxin and its ability to pass through the blood brain barrier.

Jaundice and brain fog – Is bilirubin toxic to the brain?

If you have Gilbert’s Syndrome then you produce too much unconjugated bilirubin from time to time. And, yes, this bilirubin is a neurotoxin. But in adults this should cause little problem unless there are excessive levels of bilirubin that are life threatening. Excessive levels of bilirubin are not a part of Gilbert’s Syndrome. Gilbert’s Syndrome produces mild to moderate rises in bilirubin levels.

The science stuff:

Babies can have high levels of bilirubin just after birth, and their brains are not developed to process it the way adults are. This is why bilirubin can be dangerous to newborns. Adult brains have ways to deal with the bilirubin that prevent it from causing damage.  This is noted in the extract from a piece of research below. 

https://pubmed.ncbi.nlm.nih.gov/11001835/

However, because bilirubin is neurotoxic, hyperbilirubinemia in the newborn may exceptionally result in death in the neonatal period, or survival with severe neurological sequelae (kernicterus). Bilirubin enters the brain through an intact blood-brain barrier. Clearance of bilirubin from brain partly involves retro-transfer through the blood-brain barrier, and possibly also through the brain-CSF barrier into CSF. Work in our lab during the past 5 years has substantiated earlier work which had suggested that bilirubin may also be metabolized in brain. The responsible enzyme is found on the inner mitochondrial membrane, and oxidizes bilirubin at a rate of 100-300 pmol bilirubin/mg protein/minute. The enzyme activity is lower in the newborn compared with the mature animal, and is also lower in neurons compared with glia.

https://www.sciencedirect.com/science/article/abs/pii/S0188440914002641

This article notes some of the effects of Uncojugated Bilirubin (UCB) on the barrier of the brain. The tests are in an artificial environment not actual people. They do note that long term exposure to high levels can cause neurological damage. However, in Gilbert’s Syndrome the levels wouldn’t be high enough for long enough:

In spite of the increased awareness of UCB effects to brain cells (Brites and Brito, 2012), knowledge about its passage across the endothelial monolayer, the rate in which this passage is achieved, and its effects on the integrity of the brain endothelial barrier is scarce …

In conclusion, our data demonstrate that UCB impairs barrier function in an in vitro model of the human BBB. Interestingly, this interaction involves dual effects that depend on the time of incubation, with early transcytosis and late paracellular pathways facilitating UCB entrance into the brain (Figure 8). Collectively, these results underscore the need of prompt clinical intervention in cases of lasting hyperbilirubinemia to prevent BIND and related irreversible CNS damage.

https://www.frontiersin.org/articles/10.3389/fncel.2012.00022/full

As this piece notes, there are other enzymes in the adult brain that protect the brain from neurotoxic effects: 

Owing to its lipid soluble nature, bilirubin may cross the blood-brain barrier and thus enter the brain. Its clearance from the brain is ensured by the presence of an enzyme on the inner mitochondrial membrane, which aids in the oxidation of bilirubin, thus protecting against its neurotoxic effects. The mechanism of toxicity is yet obscure, but bilirubin has a higher affinity to settle in glia and neurons.

https://www.ncbi.nlm.nih.gov/books/NBK544252/

The question is – does the effect of higher bilirubin result in sensations of brain fog, although it doesn’t appear to cause long term damage? The studies don’t appear to answer that explicitly. Bilirubin might be a factor. If you manage your Gilbert’s Syndrome and have fewer episodes of raised bilirubin this should hopefully lead to less brain fog.

Solutions

If you’ve been experiencing a long term episode of brain fog it’s a good idea to go to see your health professional. I experienced brain fog and disorientation which I thought was Gilbert’s Syndrome at first. After a couple of weeks I went to see my Doctor. It turned out to be a vitamin deficiency and I got better after a week or two of treatment.

If you are experiencing a symptom flare up, or regular episodes, then you could try a number of things that might help relieve the symptoms. (Please do always consult your Doctor if your symptoms are unusual. I’m not a medical Doctor and I am not qualified to provide medical advice. )

Quick(er) fixes

Hydration! Ok, so it’s really true that a lot of people just don’t drink enough and this directly affects your ability to think. If you are feeling sluggish a glass of water could be the simple answer. 

Nutrition – I have already mentioned that some deficiencies can cause problems. If you’ve had a long episode of brain fog that isn’t going away then do see your Doctor. This is particularly important if you take medication that can prevent you absorbing vitamins.

There are lots of foods that can optimise your health and brain health especially. I talk more about specific foods below. A balanced plant predominant wholefood diet is the best for overall health. This reduces junk highly processed foods that can cause you to feel generally unwell over time. 

Alcohol, sugar and caffeine can all mess with energy levels and cause issues if you have Gilbert’s Syndrome. Of course as noted below and elsewhere, caffeine can help some people. 

Exercise – Encouraging blood flow to your brain through exercise is an easy fix, short, long and medium term. It helps your brain stay healthy for longer. Just don’t embark on sudden vigorous exercise if you have Gilbert’s Syndrome – or your symptoms may be triggered. Even standing and moving about the room on a regular basis can help.

Sleep quality is really important. There are many reasons you could experience poor sleep and brain fog can result. Improving sleep quality may resolve the issue. Sometimes life gets in the way of sleep! In which case you could try other tactics such as stress reduction, pacing or supplements to help bolster your energy.

Stress reduction or managing response to stress eg meditation, hypnotherapy, counselling, cbt, can help you deal with stressful or anxious thinking that are preventing you from thinking clearly. 

These are all lifestyle interventions that can reduce your Gilbert’s Syndrome symptoms overall. Other posts talk about some of these in relation to managing Gilbert’s Syndrome symptoms. Here are links to some:

https://gilbertssyndrome.org.uk/how-to-stop-feeling-exhausted/

https://gilbertssyndrome.org.uk/gilberts-syndrome-and-caffeine/

https://gilbertssyndrome.org.uk/hack-your-liver-to-improve-your-mental-health/

https://gilbertssyndrome.org.uk/the-liver-diet/

I have produced a Gilbert’s Syndrome Essentials course that can help you with the main Gilbert’s Syndrome symptoms. The course has additional advice and resources to help you get started on your journey to a happier and healthier life with Gilbert’s Syndrome. Read more

To develop a personalised programme you might want to work with a health coach who can help you get a plan to improve your wellbeing based on your individual circumstances. They can help you track and manage symptoms together with you. https://wellandgoodlife.co.uk/plans-for-health-and-wellbeing/

Tracking and managing symptoms

If you’ve tried a few things and they haven’t worked, then maybe you need to take a more detailed look at what’s happening and when.

Can you pinpoint episodes? Is there something that happens beforehand. Try a symptom tracker. It may be something that happens the day before or a couple of days before that is the trigger. You might then be able to avoid the problem or adjust your lifestyle to reduce exposure or experience the symptoms when they’ll have less impact. 

For example, I had a once weekly commute to a distant city which was an eight hour round trip on top of a day of long meetings. The next day I would feel absolutely drained, and overwhelmed by brain fog. I made sure that was my final working day of the week or adjusted my hours to ensure a short working day afterwards with no complex tasks. 

Pacing

A similar kind of symptom management is ‘pacing’. If you find that after certain activities or an active period you experience brain fog or fatigue, then balancing your activities might mean you have fewer episodes. If you have a chronic health condition then pushing through is not usually the best method of living better with your condition. Pacing, a practice tested and developed with people who have chronic fatigue conditions, has been shown to work well in managing symptoms including brain fog.

The organisation for people with Ehlers Danlos and other hypermobility conditions has a guide that is useful: https://www.ehlers-danlos.org/information/managing-fatigue-sleeping-problems-and-brain-fog/

Action for ME have a useful booklet on pacing that sets it out in great detail if you want to have a go https://www.actionforme.org.uk/uploads/pdfs/Pacing-for-people-with-me-booklet-Feb-2020.pdf

How pacing works: First you would analyse when your activities are triggering your brain fog. Then limit those activities by initially reducing considerably or down to within a minimum. Only increase activity if that doesn’t result in symptoms. It takes time and planning, but it can get you off a treadmill of repeated brain fog and fatigue episodes. Sometimes you may blow your activity budget for a special occasion. At least you know what to expect and can set time aside, or practice self care to recover more quickly.

If you have ensured you are deficiency free, don’t have other health issues that aren’t treated, are eating well, reducing your exposure to caffeine, sugar and alcohol, sleeping well and are managing stress, plus there are no specific triggers to avoid then you are likely to have fewer episodes. There are plenty of posts to help with some of those aspects of living better with Gilbert’s Syndrome. You can also take the Gilbert’s Syndrome Essentials course for a grounding in dealing with some of the key symptoms. 

Long term brain health

You can support your brain function for the long term too.

Adding berries into  your breakfast could increase concentration and focus. This may be because the antioxidants reduce inflammation and support blood flow. They also support brain plasticity, enabling it to organise itself better See this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192974/

And in this study, blueberry juice was found to help brain function https://www.labnews.co.uk/article/2025588/berry_aids_brain_function_improvement

Nut intake has also been linked to better capability to pass cognitive tests in later life for women in this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4105147/

Caffeine can have short and long term benefits if you can tolerate it. It may protect against Alzheimer’s but this is thought to be because of the antioxidants. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7554764/ https://pubmed.ncbi.nlm.nih.gov/26677204/ Although caffeine has its benefits, it can potentially work against you if you are trying to balance your energy levels and issues such as brain fog. Becoming reliant on a psychoactive stimulant can make it harder to manage your fluctuating fuzzy head symptoms. Here’s my post on Gilbert’s Syndrome and caffeine

Supplements

You can add supplements into your healthy living plan or toolkit. Or, you may just need an extra boost during an episode. Here are some you might try. 

Ashwagandha https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252722/ and

Rhodiola https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9228580/ are adaptogens that help balance stress and energy levels, enabling great energy stability. They don’t work overnight, but can provide a general foundation for balancing energy and improving sleep.

Add in Gotu Kola if you need a gentle lift more immediately. I find it acts like caffeine, but without the agitation, rapid heart beat and discomfort that I experience with coffee due to my sensitivity. I use it if I have a demanding task and I’ve perhaps had a poor night’s sleep or have a flare up of fatigue for another reason. Studies show its use in a wide range of conditions. It is thought to protect the brain, support brain health, help mood and even work as a painkiller https://examine.com/supplements/gotu-kola/research/#ref-71 

If you are experiencing an overall increase in your Gilbert’s Syndrome symptoms and feeling hungover, perhaps jaundiced, nauseous etc, you might want to add in supplements such as zinc sulphate to reduce bilirubin levels. Some people also take NAC. Read more about how they impact bilirubin here: https://gilbertssyndrome.org.uk/what-is-gilberts-syndrome/bilirubin/

Some people take calcium d glucarate to help with the glucuronidation (detox pathways in the liver), and dandelion root is also thought to help https://mastcell360.com/wp-content/uploads/2019/11/Glucuronidation-Assist.pdf 

More help and info

I hope I’ve given you lots of ideas to try to help banish brain fog. If you would like more support to develop a lifestyle that supports a healthier and happier life with Gilbert’s Syndrome, you can find the Gilbert’s Syndrome Essentials Course and plans for personal support and coaching to help you here. https://wellandgoodlife.co.uk/plans-for-health-and-wellbeing/

Get regular updates on the latest help for Gilbert’s Syndrome on twitter https://twitter.com/GilbertsSyndrom and instagram https://www.instagram.com/gilbertssyndrome.org.uk/

Do let me know if you experience brain fog and if anything has helped you by sharing your comments below.

Fasting and Gilbert’s Syndrome

I’m often asked ‘is fasting is ok to do with Gilbert’s Syndrome?‘.

I’d just like to unpack that question so we’re all on the same page.

Fasting can mean many things:

Restricting calories; not eating solid food or little solid food on selected days of the week; time limited eating – with a window of a specific number of hours; cutting out particular food groups. 

Fasting usually includes liquid, as it can be dangerous to become dehydrated. 

Why do people fast?

Cultural and religious traditions have included fasting throughout history.

People have used fasting as a tool to manage body weight, health, recover from illness, and manage resource availability where food or types of food aren’t available at times. 

There’s no doubt humanity has a long history of fasting – due to circumstances or design. 

But is it good for you?

If you are in good health and have no particular factors to consider  – such as a particularly active lifestyle, pregnancy, poor sleep, demands on time and emotional energy, then there can be many benefits. Certainly, from a religious and cultural perspective there are enriching elements to fasting. 

From a biomechanical point of view – is it good for your body, and your short and long term health? 

Many studies have involved male mice and healthy humans looking at intermittent fasting of various types. There are indications of improvements in some health measures such as blood pressure, glucose management, blood lipids (fats). In mice there have been some astonishing results demonstrating extended lifespan, which haven’t been replicated in humans. 

There are many different types of fasting studied, but it appears from recent research that keeping daily eating within a time window can be the easiest method of getting the most benefits. This is because it works with circadian rhythms – your body cycle, and takes advantage of when your body is best working to get the most from your food. 

Planning your eating, thinking about nutrition content, not eating too late, eating regularly – these are all excellent ways to support good health. This type of eating is in line with the best way to look after your body. 

I’ve written a post here about the issues you might consider if trying it out for yourself, and you have a chronic health problem….

if you have Gilbert’s Syndrome then fasting for too long will trigger your symptoms. In fact, fasting is one of the ways Gilbert’s Syndrome is diagnoses for that very reason! Your body needs a steady supply of blood sugar for the reduced enzymes to work well. A 12 hour fast may work well for you, if you aren’t challenged by other issues and your liver isn’t over burdened. You will need to carefully monitor how you manage with fasting for your own context, and be aware it may not be the right thing for you.

If you want to explore fasting for health reasons, then there are a number of sources you might want to dig into. 

The US government National Institute of Health website, says:

Hundreds of animal studies and scores of human clinical trials have shown that intermittent fasting can lead to improvements in health conditions such as obesity, diabetes, cardiovascular disease, cancers and neurological disorders. The evidence is less clear for lifespan effects. 

https://www.nia.nih.gov/news/research-intermittent-fasting-shows-health-benefits

Medical News Today has a good synopsis of some of the research, up to 2022. https://www.medicalnewstoday.com/articles/intermittent-fasting-is-it-all-its-cracked-up-to-be#Potential-downsides

Dr Satchin Panda is a prominent researcher in the field of circadian rhythm and eating. You can listen to a recent Huberman podcast, where the most recent findings are discussed https://hubermanlab.com/dr-satchin-panda-intermittent-fasting-to-improve-health-cognition-and-longevity/

If you want to explore the topic further, check out the Circadian Code by Dr Satchin Panda, to find out how your body clock has an impact across your whole life experience. 

Fasting for cultural or religious reasons

Photo by Masjid MABA on Unsplash

If you are fasting for cultural or religious reasons, then I’d perhaps suggest considering some ways to make it less likely to trigger your Gilbert’s Syndrome symptoms –

Manage your energy outputs whilst not eating. Plan as little activity as possible so that you don’t use up your energy stores. Your ability to efficiently access your energy stores may be limited due to your Gilbert’s Syndrome. Regular rest breaks may help you manage your energy levels. 

Emotional stress will also impact your symptoms – try to maintain a calm environment and reduce pressures during your fasting time. Don’t add heaps to your to do list, or schedule deadlines. Your brain uses up a great deal of energy, and you will end up with brain fog if you try to place mental pressure on yourself. This can also help if reflection is part of the fasting process.

When you do eat, try not to indulge in high sugar highly processed foods. These will create a boom and bust metabolic roller coaster. If your stomach is tender, then you might want to start with something light and easy to digest like a yoghurt, or a plain bread. Savour it slowly before taking the next bites. 

Replenishing nutrients will be important, so think about the balance of your meals – are there plenty of fresh vegetables and fruit. The fibre in fruit and veg will also keep you fuller for longer too – balancing out any glucose spikes, and helping you manage your hunger into your next fasting period. 

Don’t over fill your stomach immediately or you may feel uncomfortable. For people with Gilbert’s Syndrome this is a particular problem as we have delayed gastric emptying. 

Hopefully some of these tips will help if you do fast for any reason. I wish you well on your fasting journey!

Have you been fasting with Gilbert’s Syndrome? Share your experience and help others who are considering it.

Beware B12 vitamin deficiency when you have Gilbert’s Syndrome

Tell me more about B12…

B vitamins are vital for energy and to manage stress. Vitamin B12 is a superhero that helps support your red blood cells, nerves and is essential to your DNA, as well as many other processes in your body.

Why is understanding B12 vitamin deficiency even more important when I have Gilbert’s Syndrome?

For people with Gilbert’s Syndrome it’s particularly important to get enough of this vitamin because B12 deficiency can result in hyperbilirubinemia (the buildup of bilirubin in your body). Combined with Gilbert’s Syndrome this can be acute. But this symptom could also be dismissed because you have Gilbert’s Syndrome.  It’s vital to know you have Gilbert’s Syndrome, and its symptoms, so you can include that knowledge when in a medical situation. But it’s also important not to dismiss symptoms as JUST Gilbert’s Syndrome, when they could be something else. 

Having a B12 deficiency could give you similar symptoms to a Gilbert’s Syndrome flare up – so do not dismiss it when you feel unwell for longer than usual. 

If you don’t have enough B12 your ability to produce S-adenosyl-L-methionine (SAMe) is affected, which has been shown to help process bilirubin in people with Gilbert’s Syndrome.

Low on energy? Known as “The Energy Vitamin”, Vitamin B12 is essential for the production of red blood cells and also helps maintain a healthy heart. A deficiency in B12 can cause you to feel tired and fatigued, affect your nervous system and can also cause anaemia. Click to learn more and for your discount!

From Dr Vegan

Cases and research showing impact of B12 deficiency on Gilbert’s Syndrome.

Case reports and research: 

You might be interested to read about this case, where a woman with vitamin B12 deficiency also had Gilbert’s Syndrome. Treatment with vitamin B12 led to much improved symptoms.

This article on ‘food fadism’ and GS increasing jaundice is also interesting.

(In my opinion, the headline is misleading. Many people will be eating a predominantly plant diet for a variety of reasons which may be economic, cultural or religious – not just a ‘fad’). It may be worth noting that in this study all but one of the patients are male, and this is in an Indian cohort – which has a different UGT1a1 string (the Gilbert’s Syndrome gene) to other populations. However the case report I also link to above is for a caucasian woman, and it does corroborate the findings. This means these findings are relevant across different biological variations of Gilbert’s Syndrome. 

The research illustrates the need to ensure your diet has the right nutrition, whatever foods you eat.

Many people may be below optimum ranges for B12. This study : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6540890/ shows that in India 47% of people may be deficient in B12 . Studies indicate that B12 deficiency may be at rates between 6% and 20% in the UK and US, 40% in South American countries, and up to 70% in countries on the continent of Africa. http://frankhollis.com/temp/BMJ%20B12%20deficiency%20review.pdf This is from a 2014 paper, and more recent studies 

Important things to take away from the research about B12 vitamin deficiency and Gilbert’s Syndrome. 

What’s important to note is that there are two main implications 

  1. You may have jaundice for a reason that is not directly due to Gilbert’s Syndrome, even if you have Gilbert’s Syndrome
  2. B12 deficiency will likely make your jaundice and other symptoms WORSE:

‘aggravating pre-existing indirect hyperbilirubinemia in Gilbert’s syndrome patients’

If you have jaundice that is not clearing up, or prolonged fatigue, brain fog etc – then it is always worth checking if there are other causes. If B12 deficiency is the cause then simple supplementation will have a considerable positive effect. Which is worth knowing!

What could cause B12 deficiency?

Causes of B12 deficiency are usually one of the following:

  • Age:  As we get older our stomach acid reduces which means we don’t break down the B12 into forms that can be absorbed easily by our body.  
  • Medical conditions: such as Celiac or Crohn’s disease will prevent the stomach from absorbing B12 properly, as will gastric bypasses or stomach parasites. You may also have a condition called pernicious anaemia, which results in B12 deficiency.
  • Some medications: such as metformin (used to support people with diabetes) and proton pump inhibitors (stomach acid suppressants) will interfere with how B12 is broken down and absorbed. 
  • Diet: if you aren’t careful to ensure that you are regularly eating food that contains B12, then you may become deficient over time. Modern industrial farming methods have depleted natural sources of B12 in our food.
  • https://www.nutranews.org/en–vitamins–is-everyone-lacking-in-vitamin-b12-why-is-there-such-widespread-deficiency-what-are-the-consequences–1481

What are the symptoms of B12 deficiency – and why you should know about them if you have Gilbert’s Syndrome symptoms. 

For milder deficiency you may feel tired, be pale or jaundiced if you have Gilbert’s Syndrome. You may get dizzy and feel weak, your heart may beat too quickly. A sore tongue and loss of appetite, plus other digestive disturbances might occur.

Longer term, more serious deficiencies can have very serious impacts. You may become clumsy as you lose nerve control and there is neurological damage. It may feel like you have dementia as your memory is impaired. You may even experience hallucinations and psychosis. Heart conditions and infertility can also result. 

What range is normal for B12?

The normal range for vitamin B12 can vary slightly depending on the lab. But a normal level of vitamin B12 in your bloodstream is generally between 190 and 950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. Below 200 pg/mL is low and more testing is needed.

More on deficiency

It can take a long time for deficiency to occur as the body stores last for a long time. 

How should I make sure I am not B12 vitamin deficient?

In the past we absorbed it from the soil that produced our food. Modern farming and intensive production have exhausted our soil and sanitised our food. Now, sources of food that have B12 have to be fortified. You can get B12 from eating animals, but that’s because they’ve been given supplements themselves. You can cut out the middle by going straight to the supplement. https://www.veganfoodandliving.com/vegan-diet/the-truth-about-b12-and-where-to-get-it-on-a-vegan-diet/

Taking a supplement is an easy way to get around a deficiency. It’s thought to be safe to take in any volume, as it is water soluble and so too much will be passed out of the body. Only a small amount of the supplement version is absorbed. This fact sheet gives different B12 amounts based on source, and the percentage absorption of separate supplements.

You may need more if you are older or breastfeeding, for example. If you are already deficient then extra may be taken for a while ahead of reducing to a maintenance supplement. 

If you have a condition that affects the stomach or bowel, such as Crohn’s, you may need injections rather than an oral supplement. 

How much B12 should I take?

In the US the National Institute of Health recommends 2.4mcg for an adult, more for a pregnant person. In the UK the  NHS recommends 1.5mcg.

Dietary supplements

Vitamin B12 is available in multivitamin/mineral supplements, in supplements containing other B-complex vitamins, and in supplements containing only vitamin B12. 

Multivitamin/mineral supplements typically contain vitamin B12 at doses ranging from 5 to 25 mcg (https://ods.od.nih.gov/factsheets/VitaminB12-HealthProfessional). Vitamin B12 levels are higher, generally 50–500 mcg, in supplements containing vitamin B12 with other B-complex vitamins and even higher, typically 500–1,000 mcg, in supplements containing only vitamin B12.

The most common form of vitamin B12 in dietary supplements is cyanocobalamin. Other forms of vitamin B12 in supplements are adenosylcobalamin, methylcobalamin, and hydroxycobalamin .

No evidence indicates that absorption rates of vitamin B12 in supplements vary by form of the vitamin. 

Basically – you can take a little extra in the form of a multivitamin, or you can focus on your B vitamins or B12 in particular, in which case you’ll get a larger dose. However, the type of B12 and massively increasing the dose to above 1,000mcg isn’t going to substantially increase your level of B12 absorbed. 

This supplement from Drvegan is high quality and dedicated to keeping your B12 topped up!

Final thoughts on staying well

The great news is that it’s easy to treat deficiency with supplementation and mild symptoms will quickly improve. More importantly, many people could have less than optimal B12 levels, which shows how important balanced nutrition is. 

A plant based diet is great for health and yeast extract and yeast flakes can be an important addition. Or – cereal, bread, multivitamins may all include your essential B12. 

Not everyone has the resources to afford food that has the best nutrition, or age, illness or other factors may mean that their food isn’t providing what is needed for good health. 

In the UK we are fortunate that our NHS Doctors will usually seek a blood test when symptoms mentioned present themselves. This would quickly highlight any concerns. The solution is then simple and cost effective. 

With increasingly poor diet quality and depletion of soil quality, it is important to be aware that your food intake may need to be addressed to ensure you get the best from it. Simple adjustments can balance out any gaps. You could address issues that are making you feel much worse than you need to, and are exacerbating your Gilbert’s Syndrome! 

More background reading sources on B12:

By staying informed you are taking a step towards protecting your good health and wellbeing. Try out the health and nutrition tips on the website.

Stay up to date with the research through these posts by subscribing

Follow @GilbertsSyndrom on twitter for regular tips and support. 

Get health coach support to ensure you are looking after your wellbeing with someone trained to help.

Wishing you good health and wellbeing!

image Michelle Blackwell Unsplash https://unsplash.com/photos/przZDqzZKpk

Your genes and why you have Gilbert’s Syndrome

Photo by julien Tromeur on Unsplash

Discovery and new science

Gilbert’s Syndrome was first identified in 1901 by Dr Gilbert, as a benign condition causing jaundice. Since then, scientists have mapped our genome and discovered why we have Gilbert’s Syndrome. More has been explained about how the mutated gene impacts our bodies in different ways. Each year we discover new information.

As we have improved our understanding of our genes, we have also discovered that there are different types of Gilbert’s Syndrome. People from different populations have variations of Gilbert’s Syndrome.

The important gene and its different types

The important gene is UGT1A1 . https://medlineplus.gov/genetics/gene/ugt1a1/

Mutations in this gene happen in people all over the world, but to different levels depending on your background. The main impact is that people with this gene difference produce less of an enzyme – a chemical that helps process things in the body. Bilirubin is one of the substances that this enzyme processes. See more about bilirubin here.

One of the great things about having more bilirubin in the bloodstream is that it appears to help protect people from some diseases such as cardiovascular diseases and diabetes type II. Some scientists have suggested it could be a positive evolution.

Research shows that the effect is different depending on your heritage:

For example, individuals with Eastern Asian ancestry (i.e. Chinese and Japanese) appear to have the lowest circulating bilirubin concentrations (prevalence of GS ∼2%), whereas individuals originating from India, Southern Asia and the Middle East demonstrate significantly increased rates of GS, approximating ∼20% (Figure 2). Caucasian ethnicity is associated with a 2–10% prevalence of GS .

 https://www.tandfonline.com/doi/full/10.1080/10408363.2018.1428526

Figure 2. Geographical prevalence of benign hyperbilirubinemia (GS) in articles reporting TB concentrations (i.e. data are not derived from genetic analysis) in the general population

Inheritance

You can inherit Gilbert’s Syndrome from one or both of your parents. But, these are different types:

Gilbert syndrome can have different inheritance patterns. When the condition is caused by the UGT1A1*28 change in the promoter region of the UGT1A1 gene, it is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have the mutation. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.

When the condition is caused by a missense mutation in the UGT1A1 gene, it is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. A more severe condition known as Crigler-Najjar syndrome occurs when both copies of the UGT1A1 gene have mutations.

https://medlineplus.gov/genetics/condition/gilbert-syndrome/#inheritance

Other things that impact your Gilbert’s Syndrome symptoms

The current thinking is that there are different versions of mutation of the UGT1A1 gene. Because of this and a range of other factors you might experience symptoms. This is where the importance of understanding that your genes are only ONE piece of the jigsaw comes in. The key to managing any genetic condition or trait is to understand that there are many other things that impact how it works in you.

In Gilbert’s Syndrome, of whatever type, other things will impact your symptoms. One reason few people experience symptoms before puberty is because the hormonal changes that occur at that time trigger symptoms. Hormones are one factor – from life changes to menstruation, this will impact your symptoms.

Other factors which affect your Gilbert’s Syndrome symptoms include – vigorous exercise, fasting, dehydration, a virus, external toxins, stress, sleep deprivation and many more. The pathways of the liver which use the enzyme we are deficient in as a result of this gene mutation are affected by all of these internal and external factors.

It’s worth understanding that genes are only one component of how you live your life. AND you can control many of the other components to enhance your wellbeing. But don’t forget you also benefit from the protective effects that your Gilbert’s Syndrome offers.

Find out more and stay up to date

As a member of the Genetic Alliance, a charity with a membership of over 200 patient organisations in the UK that supports people with genetic conditions, I stay in touch with the latest on support for people with genetic conditions. If you want to find out more about genetic conditions check out their website https://geneticalliance.org.uk/ You can also find out more about genetic testing in the UK.

With continued discoveries about how a gene difference can influence us, and the adaptation of science to support our health, as well as how lifestyle and lifestage are key, it’s important to stay up to date with understanding Gilbert’s Syndrome. This way you can take control of your health and happiness.

Sign up / donate to help keep this information coming!

Wishing you well

Free apps to help you live well with Gilbert’s Syndrome

Photo by James Yarema on Unsplash

There are lots of free apps available that could add to your quality of life. This post shares some that you might like to try. Maybe they can help you to deal with symptoms of Gilbert’s Syndrome, such as anxiety, as well as to support a healthier lifestyle. I’ve focused on free to use ones, so that there are no barriers to access (apart from having a smartphone!). Some also have websites if you don’t have a phone. Why not share any you have found useful by adding a comment?

Anxiety is a main symptom for people with Gilbert’s Syndrome.  There are plenty of apps that have tried and tested methods for helping people with anxiety and other mental health issues.

Insight timer is an app (and website) that provides free meditations and soothing soundscapes. You can listen to recordings, join classes and even add your own content! It’s a lovely community of folks from every tradition and there’s bound to be something that will fit your needs. The website is here https://insighttimer.com/

Calm is a well regarded app with free elements, although you can access most of its features if you pay a subscription. Check out the website here https://www.calm.com/

Sleep is closely associated with anxiety, and the two apps above may help improve your sleep. There are some that specifically deal with sleep. A good night’s sleep is really important if you have Gilbert’s Syndrome. It can help manage anxiety and prevent fatigue.

Tide. The app plays relaxing music that lulls you to sleep. It can actually stop the track once you’ve fallen asleep! Tide has a light wake-up alarm that awakens you during your lightest sleep phase. It also has calming breathing exercises, where your breathing in and out is guided by sound. Find out more here https://tide.fm/en_US/

PrimeNap. This app comes with sensor-assisted sleep tracking and an activity log so you can see how your day’s choices affect your sleeping patterns. Extra bells and whistles include a screen dimmer, sleep sounds, and dream journal. It doesn’t appear to have a website, however.

Food is a key ingredient in managing your health and wellbeing. Making positive choices will boost your energy, reduce unpleasant symptoms, and help you feel happier.

Feeleat – as a health and nutrition coach I’m always looking for an app to help people keep track of what they’re eating and how it affects them. It’s the first step in any food for health journey. Recording what you eat and how you feel is really powerful especially if working alongside a coach to find the best nutrition that works specifically for you. You could just begin by using it along with tips on gilbertssyndrome.org.uk , and see how you get on.  Here’s their website https://www.feeleat.fr/en/

Dr. Greger’s Daily Dozen. Highly rated, this app gives you a simple way of tracking easy healthy additions to your food. Dr Greger’s science backed approach is also not for profit – all proceeds from his books, etc go to charity.  The full website is here (you can also get a regular email) https://nutritionfacts.org/

Exercise is important in dealing with your mental health, sleep and energy levels. It can be a tricky subject if you have Gilbert’s Syndrome, as exercise must be moderated alongside your symptoms. If you over do it, you may kick off side effects such as fatigue, jaundice and nausea. In my experience moderate intensity exercise that you have built up to tolerate well will offer you the main benefits of exercise.

BetterPoints – get rewarded for exercise! There are a few apps that award vouchers or prizes for walking or exercising check out your app store to see which will work best for you https://www.betterpoints.ltd/app/. I use one that rewards me for walking the dog, which I love, called Biscuit, https://biscuitpetcare.com/ but you may not have a dog!

Couch to 5k, is an app produced by the NHS in the UK. This app aims to give you support to get yourself to a foundational level of fitness that will actually transform your health and wellbeing. Great if you are starting out to explore how to gently get yourself fitter.  You can find out more on the NHS website https://www.nhs.uk/live-well/exercise/running-and-aerobic-exercises/get-running-with-couch-to-5k/

Tree ID is a lovely app for identifying trees when you are out on a walk. Makes a walk more fun and educational!  Find out more here at the Woodland Trust website https://www.woodlandtrust.org.uk/trees-woods-and-wildlife/british-trees/tree-id-app/

Life saving! I had to add this one, as it just might save your life or someone else’s.

St John Ambulance first aid app is highly regarded for supporting lifesaving actions if you are ever in a situation where it is needed. It will walk you through how to deliver simple lifesaving actions. Worth knowing whatever happens!  You can find out more about the lifesaving work of St John Ambulance here https://www.sja.org.uk/ and more about the app here https://www.sja.org.uk/get-advice/free-first-aid-app/

I hope you find some useful and interesting applications here. There are always new ones coming on to the market too. Why not share any you know of that have helped you, by adding to comments below. That way we can help each other life a better life with Gilbert’s Syndrome.

Easy recipes for a healthy life with Gilbert’s Syndrome

As a health and nutrition coach I believe that a foundation of health is what you put in your body. In these easy recipes are foods that will help you live a healthy life with Gilbert’s Syndrome. My main tip is always- eat more plants! Plant fibre, nutrients and fats are fantastic for keeping you well. As the World Health Organisation said, in its 2021 review of plant based diets

Overall, a diet that is predominantly plant-based and low in salt, saturated fats and added sugars is recommended as part of a healthy lifestyle.

Photo by Maarten van den Heuvel on Unsplash

Why are plants so great if you have Gilbert’s Syndrome?

If you have Gilbert’s Syndrome there are numerous key benefits you can get from plants. Cruciferous vegetables (broccoli, sprouts, etc) are great for supporting your liver function.

Photo by Mockup Graphics on Unsplash

Broccoli has been found to contain a phytochemical (plant chemical) called sulphoraphane, which enhances the phase two-detoxification pathway in the liver.

Fibre is great for keeping you feeling satisfied and sustains energy levels. It supports gut health which supports immunity and better absorption of other nutrients. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8153313/

A plant based diet is also low in fat and the types of fats eaten are generally essential and good for you.

This report ‘Wellbeing and Veganism‘ discusses the role a vegan diet has in potentially reducing anxiety and enhancing wellbeing.

How you can make positive changes easily

As a coach I start with adding in the good stuff, not depriving you of things you enjoy. Getting rid of less healthy food will come more naturally once you have developed an appreciation of how good food helps you feel healthier. (I also don’t believe in a calorie counting approach to a healthy diet, as different foods are absorbed differently, by different people, regardless of calories. If you are ever coached by me you’ll find out more about my science based approach).

Starting with small habits is a recipe for long term success, rather than drastic change overnight. Your taste buds, existing habits, your brain and body, will have set patterns you’ve developed over time that make it really hard to transform in an instant. It takes repeated attempts to change a pattern, as it has become ingrained. Making small, easy changes is a step by step road to success.

Here are some small changes you could make: eat a veg soup or small salad before your main meal; add a tin of tomatoes or pulses (beans or lentils) into a sauce or stew; add chopped apple or berries to cereal or ice cream or yoghurt, add some sweetcorn to a plate at dinner, or mashed butternut squash. The possibilities are endless. 

These easy recipes, below, will help you make some simple changes and live a healthy life with Gilbert’s Syndrome.

Here are more posts on what food will help with Gilbert's Syndrome.       
→   https://gilbertssyndrome.org.uk/the-liver-diet/ 
→   https://gilbertssyndrome.org.uk/detox-diets-and-gilberts-syndrome/ 
→   https://gilbertssyndrome.org.uk/sesame-magic-for-your-liver/ 
→   The How Not to Die cookbook has lots of tasty recipes and you can see from the reviews that many readers report increased energy.

Some people say that eating more plants is expensive. But it doesn’t have to be. In fact, you can save a lot of money with the right choices. This study from Oxford University shows that a vegan diet can slash your food costs by a third!

Make your veggies cheaper and last longer by buying frozen. A bag of green beans or broccoli costs less than a pound from discount supermarkets in the UK. Look for reduced labels – it’s still fine to eat. Buy the loose veg and in the amount you need – it’s often cheaper and there’s no waste. Try something new when it’s in season and better value. Get the wonky versions – lots of supermarkets sell these now, and they are every bit as good as the not so wonky! 

An advantage to adding in plants is that you are likely to feel fuller for longer, with sustained energy. This really helps manage your fatigue and prevents you from falling back on energy killers such as sugary food.

Here are some key ingredients, below, to make a wide range of tasty and healthy meals. You can add in your favourite herbs and spices for different flavours. I only mention four vegetables here, which you can swap through the recipes and experiment with other veg such beetroot, cauliflower or parsnips. So, here we go, some easy recipes to live a healthy life with Gilbert’s Syndrome…

Stock up on these key ingredients to get started:

  • Vegetable oil
  • Wholewheat self raising flour
  • Nuts of your choice (walnuts are my suggestion) or sesame seeds – get the ones in the baking aisle as they are cheaper and the broken nuts are less expensive than whole ones. 
  • Salt
  • Pepper
  • Lemon juice
  • Garlic puree
  • Broccoli
  • Sprouts / cabbage or another green
  • Carrots 
  • Onion
  • Sweet potato
  • tinned tomatoes
  • pulses of your choice

Recipes

Photo by Monika Grabkowska on Unsplash

Versatile carrot soup

serves four, or freeze spare portions for another time

Ingredients:

  • vegetable oil 1tbsp
  • 5 large carrots (grated)
  • Small onion (roughly chopped)
  • 800ml of vegetable stock, or water with some garlic, salt and pepper plus lemon juice. 
  • Flavour with whatever herb or spice you have – coriander, cumin, ginger, paprika, black pepper etc.

Steps:

  • In a large deep pan heat the oil and fry the onion gently for 5 minutes until transparent
  • Add the grated carrots and cook for a further 5 to 10 minutes
  • Add the vegetable stock and coriander (or other herb or spice) and simmer for up to 20 minutes or until the carrots are falling apart
  • Put through a blender or mash with a potato masher

Variations

Add a potato and remove a carrot if you would like it less carroty

Top with toasted cashews for added protein

Photo by Andrei on Unsplash

Brilliantly simple broccoli

Stir fry broccoli in a dash of oil, with some sesame seeds (or other nuts if you prefer). Add garlic, black pepper and salt and a dash of lemon juice to taste. Or a dash of soy sauce. 

Super sprouts

Sprouts aren’t to everyone’s taste, but they are really good for you. If you don’t like them, try cabbage as a substitute – savoy, red or white. Personally I love sprouts!

Here are two ways to deal with sprouts:

  • I suggest part cooking in the microwave first (just 2 or 3 minutes) if you don’t like them too crunchy, or they are from the freezer. Slicing them makes them a little easier to deal with on the plate, and they stir fry more quickly. Then stir fry as per the broccoli and add walnuts. If you have sesame oil to stir fry them with that will transform the flavour. 
  • You can also drown them in a rich tomato sauce by cooking tinned tomatoes with garlic, salt and pepper, plus some lemon juice and a dash of sugar, ketchup or sweetner to taste. Microwave, steam or boil the sprouts, then finish off by cooking in the tomato sauce for 5 minutes. The richness of the tomatoes really complements the sprouts.

Veg pie

serves four, or freeze spare portions for another time

ingredients:

pie contents-

  • 2 carrots
  • 1 large or 2 medium sweet potatoes
  • 1 tbsp oil
  • 1 leek
  • 1 tin of chopped tomatoes
  • Cooked lentils or a tin of baked beans
  • garlic, salt, pepper, lemon juice to taste

pastry-

  • 100g flour (preferably wholemeal)
  • salt and pepper
  • 50g of oil
  • dash of cold water
Photo by Nathan Dumlao on Unsplash

Steps:

Make pastry –

  • Flour, salt and pepper to taste, and oil, mixed together with a fork to form crumbs, add some cold water and shape into a stiff dough. Put in the fridge whilst making the pie contents.
  • Put the oven on to heat (180 degrees celsius)

Pie contents –

  • Chop the carrots and sweet potatoes into similar sized chunks, pop in the microwave for 5 minutes to begin to soften. 
  • Fry the leek in the oil for 5 minutes, then tip in the part cooked carrots and sweet potatoes.
  • Add tin of chopped tomatoes and cooked lentils or a tin of baked beans (or any other bean). 
  • Add garlic, salt and pepper to taste. Add a dash of lemon juice
  • Simmer for 15 minutes then tip into a casserole / pyrex dish.
  • Roll out the dough and place on top of the above ingredients in a casserole/pyrex dish. 
  • Cook in a warm oven for 30 minutes – or until the pastry is browning

You could add sesame seeds to the pastry to give it a nutty flavour. 

Change the seasoning for different flavours – curry powder, smoked paprika, cumin and chilli powder. 

If you prefer you could make a mashed sweet potato topping instead of the pastry and swap around some of the veg for what else you might have available. 

Sweet potato options

Sweet potato can be mashed with carrot or parsnip for a really sweet and tasty alternative or addition to the usual mashed potatoes. 

Or, chip the sweet potatoes and roast in a shallow tray with a splash of oil. 

Photo by Louis Hansel on Unsplash

Of course, a plain baked sweet potato is always lovely! You can also make it into a soup instead of the carrot, or as well as. 

PS – if you need to satisfy a sweet tooth, here’s my favourite carrot cake recipe – it’s so simple and quick https://veggiedesserts.com/vegan-carrot-cake/

I hope these have given you some ideas to be creative and quick with simple ingredients available in any supermarket or grocer.

Here are more recipes for you in this downloadable pdf

Master your immunity with Gilbert’s Syndrome.

Disclaimer: Please note that I am not medically qualified and this is not medical advice. The information in this article comes from sources which are referenced /linked to, many of which are published scientific research papers, or secondary sources which reference published research. Please consult your health professional about any health issues or concerns.

What you need to know about immunity

  • Immunity is your body’s power to fight alien invaders that make you sick.
  • You already have many active immune powers – your skin barrier, stomach acid and gut bacteria, mucus, coughs and sneezes, fevers and killer cells in your circulatory system.
  • You can maintain and support your immune powers by eating more plants, exercising, controlling stress and good sleep.
a hand is held up against images of virus cells coming towards it
Image by Bruno /Germany from Pixabay

Why is it important to support your immunity if you have Gilbert’s Syndrome?

Your liver works between your gut and your blood system. It supports both of these and the cells needed to fight disease. 

If you have Gilbert’s Syndrome, you may become jaundiced when fighting infection, and when recovering from a virus. You might feel tired for longer and after the virus has gone it could take a while to get back on your feet. It’s not clear exactly why you may experience these symptoms, but the liver is involved in so many elements of immunity that it works over-time when you are sick. By looking after your immune system you give it the best chance of working well and recovering quickly from any illness.

You can read more detailed information on liver and immunity here : https://www.nature.com/articles/cmi20163 https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/hep.22034 

If you want to know more about your immunity superpowers and how you can master them, read on…

Our immune system is working for all of us all the time – not just during a pandemic. Our clever bodies fight off many threats, not just viruses. We use our immunity to kill bacteria, remove toxins, heal wounds and fight cancer. 

During the Covid19 pandemic scientists around the world worked to understand immunity and the impact of a virus on individuals and society. We have learnt a lot that we can use to build up our long term health and immunity. We could live longer healthier lives as a result. 

What is immunity?

https://medlineplus.gov/ency/article/000821.htm

We all start life with the basics of immunity. Our immune defences include a skin barrier, stomach acid, mucus in our nose and a cough reflex. These are part of how our body responds to harmful invaders. If bacteria or viruses get past our frontline barriers, then other systems kick in, and we may develop a fever or inflammation which also kill invaders.

a person holds their hand in front of their mouth as they cough
Image by mohamed Hassan from Pixabay

Our protective cells

Within our body tissues, and in our circulatory system, we have cells that respond to protect us, such as white blood cells. These produce antibodies (here’s a link to a description of antibodies: https://my.clevelandclinic.org/health/body/22971-antibodies) and cytokines (here’s a link to a description of cytokines: https://www.verywellhealth.com/what-are-cytokines-189894)  which are cells that attack harmful viruses and control how your immune system responds. White blood cells are also attracted to places where our body is damaged, by chemicals such as histamine. When white blood cells collect together the damaged part swells, helping the body to isolate and deal with any harmful substance. 

We are born with some of our immune system in place, but we then develop immunity as our bodies encounter new substances. Vaccines teach our bodies to respond to a harmful virus, in a very small amount,  without experiencing the full virus. 

Because our immune system involves so many parts of the body, from our liver, bone marrow, to spleen and our lymphatic system, as well as individual cell types, overall health is really important. 

There’s so much we DO know and 

much MORE 

we DON’T know about immunity

Some things we’ve learnt from Covid19

Our understanding of immunity has changed a lot in a short period of time. Scientists have had the opportunity to study immunity in many millions of people around the world because of the widespread Covid19 virus. This sort of data gives us much better quality information than the usual research samples of small scale studies in an artificial environment on (usually) young healthy male humans.

Nutrition and existing health problems measurably impact Covid rates and recovery

A study from the UK Biobank of 500,000 participants showed lower rates of COVID in those consuming the most vegetables and coffee, and higher rates in those eating the most processed meats2. (Plant Based Health Professionals fact sheet September 2022 https://plantbasedhealthprofessionals.com/wp-content/uploads/Nutrition-Immunity-and-Covid-19-for-Health-Professionals-060922.pdf )

There’s no doubt that having other chronic health problems impacts how badly you suffer from a virus such as Covid19 or flu. Obesity, hypertension, high cholesterol, and type II diabetes – all of which are widespread in the UK, USA and other westernised countries, leave you with a higher risk of going to hospital when you have a virus. Fortunately these are chronic health problems which can be tackled through changes in diet and lifestyle. 

One study of almost 600,000 UK & US participants, showed a 9% lower risk of contracting COVID, and a 41% lower risk of severe COVID in those eating a healthy plant based diet.(Plant based health professionals fact sheet September 2022 https://plantbasedhealthprofessionals.com/wp-content/uploads/Nutrition-Immunity-and-Covid-19-for-Health-Professionals-060922.pdf )

Of course there are many other conditions, social and economic impacts as well as lifestyle which will influence your immunity. A good healthcare system is another important factor! Some of these can be managed and controlled. This article looks at how to give yourself the best chance of supporting your immune system alongside these challenges. 

Age

Age plays a part in immunity. Usually, young children and older people have less robust immune systems. Covid19 is an unusual virus as it doesn’t affect young people as much as older people or other adults. The best way to protect younger or older people from viruses is to ensure they have a healthy diet, spend time being physically active, and are kept protected from potentially life threatening viruses. For children, vaccines and some exposure support the development of their immune system. 

Gut microbiome

There is a lot of emerging data that shows that the health of your gut bacteria (all the different types of bacteria together are called the microbiome) play an enormous role in your immune health. https://gut.bmj.com/content/70/4/698  . Over at Zoe they have done an incredible amount of research looking at the gut microbiome and health https://joinzoe.com/learn/gut-health-and-immune-system . It now appears that this part of our body is responsible for much of our overall health like a central government ruling a nation. 

The best way to feed the gut is with plants. Lots of different types of plants. A healthy gut will keep down inflammation in your body, reduce auto-immune conditions, help you overcome infection, balance your blood sugar and fat levels in your blood. It will protect you from many chronic and acute health problems. 

a person places their hands over their stomach
Image by Alicia Harper from Pixabay

According to David Heber MD, PhD, Professor emeritus at UCLA 

70% of the immune system is located in the gut, where diverse bacteria is best.” https://connect.uclahealth.org/2021/03/19/want-to-boost-immunity-look-to-the-gut/

“The microbiome and the immune system are critically intertwined,” says Jonathan Jacobs, MD, PhD, a professor of digestive diseases at the David Geffen School of Medicine at UCLA. “What’s present in the gut determines what education immune cells get.”

“Dietary diversity and microbial diversity go together,’ Dr. Jacobs says. ‘The typical Western diet, which is high in animal proteins, sugar, processed foods and saturated fat, results in less-diverse gut bacteria and promotes inflammation and chronic disorders”, he says.

Fortunately, it appears that Gilbert’s Syndrome itself does not have a negative effect on the gut microbiome, (you can read more in this link: https://www.frontiersin.org/articles/10.3389/fcimb.2021.701109/full ).

4 KEY factors

There are 4 key factors that affect immunity (and the gut) : diet, exercise, stress and sleep. 

Diet

Three little words I offer to everyone who consults me as a health coach are ‘eat more plants.’ If you do nothing more than this, your body will thank you. Your gut and your liver will both work much better the more plants you eat. 

Plants are anti-inflammatory. Although short term inflammation is good for beating alien invaders, in many people it becomes a long term condition which harms the body. This can lead to heart problems, bowel, disease, arthritis and cancer. Plants have chemicals and nutrients that feed your cells and organs – helping them to stay strong and work better. 

If you have Gilbert’s Syndrome you could focus on ‘cruciferous’ veg such as broccoli, brussel sprouts, cabbage and cauliflower as these are great for your liver function. Read more about the liver fortifying diet here: https://gilbertssyndrome.org.uk/the-liver-diet/ 

If you need to build up your veg eating tolerance, you can start with some easy swaps or inclusions eg add more peppers, courgettes and tomatoes (tinned are great!) to a pasta sauce; lots of veg can make a tasty mash – parsnips, carrots and squash, not just potatoes; curries, casserole, stews, soups, tagines, pies, pasties, fajitas, wraps, etc can all have added veg that will enhance texture, flavour and be fabulous for your health. 

Try to eat what’s in season as this will be more affordable. Reducing animal products will also be better for your wallet as well as your health. A health coach can give you lots of support to include nutritious food that works for your situation. 

With the added fibre you’ll feel fuller for longer and your blood sugar will be more stable giving you more energy over time. Your gut bugs LOVE fibre. 

For a more detailed post on a diet for your liver go here https://gilbertssyndrome.org.uk/the-liver-diet/

You can find recipes here https://gilbertssyndrome.org.uk/recipes-for-your-liver/ and a recipe leaflet as well as more advice here https://gilbertssyndrome.org.uk/tips-for-gilberts-syndrome-and-holiday-celebrations/

Exercise

This review of work around Covid looks at exercise and immunity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7387807/#:~:text=The%20practice%20of%20physical%20exercises,as%20well%20as%20cell%20recruitment.

Exercise helps your body in lots of ways – keeping your body fat down, supporting healthy muscle tissues and blood vessels and reducing inflammation. All of these contribute to the chemical reactions which ensure your body has the powers it needs to deal with infections.

Image by Julien Tromeur from Pixabay

It’s really important to maintain physical fitness through movement as you age. Recent studies show that you will be less likely to die from all causes if you build muscle strength. 

You can read more about muscle and its relationship with immunity and infection in these two pieces, which cite research material. 

“Muscles produce and release compounds which play an important role in the creation, activation, and distribution of some immune cells. They are also key sources of amino acids used by the body during stress or infection.“ https://timesofindia.indiatimes.com/blogs/voices/impact-of-poor-muscle-health-on-bodys-immunity/ 

“Muscles produce and release compounds which play an important role in the proliferation, activation and distribution of some immune cells.2 And while additional research is needed, data suggests loss of muscle mass is associated with compromised immunity and infections.3,4 “ https://www.nutritionnews.abbott/healthy-living/aging-well/minding-our-muscles-for-immune-health/#:~:text=Muscles%20produce%20and%20release%20compounds,distribution%20of%20some%20immune%20cells.&text=And%20while%20additional%20research%20is,with%20compromised%20immunity%20and%20infections

So what do I mean by exercise?  It really varies depending on your personal situation.

For people with Gilbert’s Syndrome, whose symptoms could be triggered by sudden high intensity exercise, as well as other people who may not be used to exercise – low to moderate intensity exercise is the best place to start. If you have been very unwell or are out of condition then the smallest movement will be a positive step. Lots of conditions affect your ability to exercise, through pain or exhaustion, or feeling sick. You may need help to pace yourself as you achieve greater fitness. 

Ideally you would achieve a good amount of moderate intensity exercise. A brisk walk, heavy cleaning, playing tennis or cycling could be considered moderate intensity. Up to 90 minutes of exercise in one go is optimum, but even half an hour of brisk walking will benefit you.

You can develop your fitness alongside a physiotherapist or coach, who can guide you through appropriate movements for you. 

If you feel able to tackle more exercise yourself you can find more examples of different exercise levels here https://www.hsph.harvard.edu/obesity-prevention-source/moderate-and-vigorous-physical-activity/#:~:text=Moderate%2Dintensity%20activities%20are%20those,burn%20more%20than%206%20METs.

Exercise that supports your cardiovascular system is only one kind that will benefit you. As you get older it’s really important to ensure you have muscle strength as muscle tissue decreases every year as you age. 

Strength exercises play a crucial role in staying healthy and strong. Squats, push ups (even on your knees), roll ups, bicep curls and lunges are the top strength exercises and you don’t need a gym or special equipment to do them. You can find more details on how to do those exercises here https://gethealthyu.com/strength-training-moves-for-women-over-50/ If you aren’t used to them just start with one or two repetitions to get your body used to the idea. It won’t take long before you progress. 

I would add that if you have Gilbert’s Syndrome and you are having a symptom flare up – don’t over do it! Gentle exercise is better than none, but you don’t have to push yourself. You’ll only take longer to recover if you force yourself to exhaustion. Moving around a bit usually helps, unless you are flat out. It’s usually better for your mind and body to have a gentle walk than stay in bed all day.

Stress

Stress is a word that means different things to different people, so let’s take a minute to think about what it is. Stress can be good and bad. If it’s too much stress over a longer period of time  then you will likely experience symptoms such as an impact on your immunity.

Good stress is energising, gives you a buzz and is motivating. Short term acute stress actually temporarily enhances your immune system, as we’ve evolved to deal with and survive sudden attacks.

illustrated outline of a person with words relating to stress and worry written in different colours over the image, a clock is in the background
Image by John Hain from Pixabay

Bad stress, over a period of time, will do the opposite – you may feel paralysed or overwhelmed. You may be running around madly but feel like you are achieving little. Feeling tearful or short tempered a lot of the time are symptoms of too much stress. You may respond differently to a stress such as a deadline or sudden additional life task depending on what else is going on in your life. If you have space and time then it may feel good to focus on those tasks, but if you have an already overwhelming list or lack sleep, or feel ill, then it could feel unachievable. 

This study of 30 years of research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361287/ shows how your body’s psychological response to a stress can ‘upregulate’ some of your body systems and ‘downregulate’ others, including your immune system. 

You may have heard of ‘fight or flight’ which is one way your body systems respond to psychological stress. This is a really shorthand way of saying that your nervous system has evolved to respond to threats. These are very physical responses, but the stresses of modern life are not physical – an exam, test, aggressive client or boss, bad driver, rude shop assistant etc. Some of these involve short term reactions – an increase in adrenaline and heart rate. Some of them are long term stressors such as grief or a divorce, the wrong job or caring for a disabled relative 24/7 with no respite. With repeated acute stresses, or longer term stress, your body is continually ‘disregulated’, flooded with stress hormones and altered physiological responses that are bad for your immune system longer term. 

Simply put, your body wants to respond to the stress and move on. When you can’t do that then it can be harmful to your body, mind and immune system. 

A note on trauma. It’s now accepted that traumatic situations that happened earlier in life can have a long lasting effect on your mind and body. In particular events in childhood form the way your body and mind will respond in the future. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5143500/ In this research observation in people shows that inflammation is increased in those who experienced trauma when children. Stimulation of the stress response when young also affects how the brain develops. There is so much more to understand in this area and we are just scratching the surface of immunity and stress and trauma in particular. 

But what can you do? You may feel stress is outside of your control, or is something that happened in your past and you can’t now change it. Maybe you feel powerless.

You always have power against stress.

The most important way to deal with stress is to notice it. Don’t get drawn into response, notice you are feeling stressed, overwhelmed, angry, irritable, tired, upset. Say to yourself ‘ I notice I am feeling x’, label it and give yourself a moment of distance. It can be enough to break a spiral downward. 

Regular breathwork and meditation will also manage your body’s responses. Using just your breath will instantly send your body signals that you are calming down. Longer term, meditation will reduce your reactive stress response. 

an outline image of a person sitting in a  meditative pose has a backdrop of words such as 'attend' 'allow' 'pause' 'feel'
Image by John Hain from Pixabay

With trauma or deeper issues it’s important to get help. You may find you are stuck in repeated behaviours or thoughts that you need support to manage. Like getting a plumber to repair or service your heating system, your body and mind are systems that need repair and maintenance too. Sometimes you can get away with DIY, sometimes you need a professional to help you. 

I have lots of resources to help you manage stress and anxiety on the resources page https://gilbertssyndrome.org.uk/resources/ , and in these posts, https://gilbertssyndrome.org.uk/hack-your-liver-to-improve-your-mental-health/ plus the Essentials of Gilbert’s Syndrome course (available from November 2022 https://gilbertssyndrome.org.uk/free-foundation-course-to-understand-gilberts-syndrome/ ).

Sleep

Sleep impacts your immune system, and the reverse is also true! 

Rest is key to your body and mind’s ability to repair and regenerate. But did you know that sleep also influences how effective a vaccine is?  Just one good night of sleep following a vaccination can enhance the antigen activity (https://en.wikipedia.org/wiki/Antigen) https://www.youtube.com/watch?v=qCRwuxDpthY&ab_channel=By%3ARachelTaylor

https://www.sleepfoundation.org/physical-health/how-sleep-affects-immunity

In fact, during sleep parts of our immune system actually ramp up, taking advantage of the down time to get some jobs done whilst you aren’t using your energy to move about. 

There’s also no doubt that poor sleep can add to the likelihood of developing chronic health problems such as diabetes and heart problems. 

You can read more about the science behind what happens when you sleep in your body that strengthens your immune system here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256323/

‘Sleep and the circadian system exert a strong regulatory influence on immune functions. Investigations of the normal sleep–wake cycle showed that immune parameters like numbers of undifferentiated naïve T cells and the production of pro-inflammatory cytokines exhibit peaks during early nocturnal sleep whereas circulating numbers of immune cells with immediate effector functions, like cytotoxic natural killer cells, as well as anti-inflammatory cytokine activity peak during daytime wakefulness. ‘

an illustration of a person in a bed with arms outstretched as the sun rises and an alarm clock next to them shows 9am
Image by Tumisu from Pixabay

There are lots of reasons that sleep affects your immunity. Your body has a natural rhythm when hormones rise and fall and which are part of your body’s ability to respond to daily challenges. When these are not synchronised, then your body isn’t equipped to respond effectively to changing energy needs or demands on it. Cytokines – the chemicals/cells that trigger the work of white blood cells that kill invading infections, also ebb and flow with your sleeping patterns. 

There’s much more about sleep and Gilbert’s Syndrome here https://gilbertssyndrome.org.uk/sleep-and-gilberts-syndrome/

Top tips to take away

  • Most of your immune system is in your gut and the best way to support your gut is to eat lots of different types of plants. 
  • Exercise helps your body by improving your muscle to fat balance, your cardiovascular system (circulation of blood, lymph and oxygen) and reducing your inflammation levels. 
  • Managing stress stops longer term damage to your immune system.
  • Sleep helps you heal and your body work well every day. 

There are no shortcuts to a strong immune system. There are so many working parts to it that you can’t do one thing and expect a miracle cure. BUT –

Your body is a wonderful machine and will respond immediately to positive changes.

If you need support to make those changes, you can speak to a health coach. http://wellandgoodlife.co.uk/

Guide to Gilbert’s Syndrome and itching

Itching is a topic that really gets under the skin of people with Gilbert’s Syndrome.

One of the most common questions I hear, from people with Gilbert’s Syndrome,  is ‘does anyone else get really itchy???!’  The answer is ‘absolutely’! Many people with Gilbert’s Syndrome get itchy skin.

But WHY and WHAT can you do about it?

Why?

The reason it happens is up for speculation. It has been recognised, for over 2,000 years, that jaundice (which many people with Gilbert’s Syndrome will have at some point) is linked to itching (technically known as ‘pruritis’). 

Is it the prickly nature of bile salts? Is it toxins building up in your body as your liver isn’t dealing with them properly? Your skin is your second largest de-tox organ, and if your liver isn’t doing its best, then your skin may be acting as back up. Are there histamines, serotonin or other chemicals produced by the body involved? 

There’s no doubt that bilirubin build up (one of the main Gilbert’s Syndrome symptoms) above a certain level does cause intense itching, usually at the point when you can see jaundice in your skin or eyes. 

‘Itch is present in 80%-100% of patients presenting with cholestasis and jaundice’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4316083/  You can find out more about the way your body may be generating the itch sensation in this article.

Not Gilbert’s Syndrome?

Of course – it may not be your Gilbert’s Syndrome at all. Lots of things can cause the sensation of itching:

Sometimes it’s an allergic reaction, or eczema, or even a pinched nerve. Pregnancy and some medications can also cause itching. Itching can be a side effect of medication that’s not being effectively processed in your liver, as a result of your Gilbert’s Syndrome. Do keep an eye on symptoms when taking any new prescription drug and speak with your doctor if you have any unusual or unpleasant sensations. Air conditioning or your age can affect your skin’s dryness and sensitivity. You can also develop a response to a detergent, wash or perfume even if you’ve used it for years. Don’t assume it’s always Gilbert’s Syndrome. 

This article provides some hints and tips to try – it is not medical advice and I am not medically qualified. Always speak to your medical professional before changing a health or medication routine, or if you are getting unpleasant side effects or symptoms.

What can I do?

Most importantly – how do you stop it when it’s driving you crazy! 

Once you’ve read this article you should be better equipped to:

  1. Deal with the liver function if that’s the root cause
  2. Soothe and comfort the skin to reduce the itch
  3. Give your skin the best chance to be irritant free

Look after your liver function: 

If this is a Gilbert’s Syndrome related symptom, then Step One in managing a flare up of GIlbert’s Syndrome remains the same. In headlines : sleep, drink water, eat nutritious low fat, low sugar whole foods and relax. If you are being triggered by something in your environment (medication, chemical fumes etc), then remove or reduce it if you can.

Usually symptoms will last just hours or a couple of days if you can take time to manage your lifestyle. This isn’t always possible of course – you may have caring responsibilities, a shift pattern, other chronic illnesses, be travelling or under a great deal of stress. Whatever your situation, be kind to yourself and do what you can to make the most of your situation to try to include some of those elements of good self care. 

You can read more about dealing with symptoms and lifestyle across this website and take the Essentials of Gilbert’s Syndrome course (find out more here) to get foundational tips to manage your life better with Gilbert’s Syndrome. 

Meanwhile – let’s deal with the itch! 

This is really important, before we go any further,  DO NOT SCRATCH! All this does is irritate the skin and you’ll end up with a longer term problem whilst the skin heals. If you DON’T scratch then the itch will stop as your Gilbert’s Syndrome symptoms settle down (or when you remove the irritant).

If you DO scratch, then you’ll be dealing with skin that is irritated, sore and healing and will itch even MORE!

You may find, like me, that you scratch at night or without even thinking about it. Try to train yourself to notice before you damage your skin. At night, you could cover the itchy skin with clothing or wrap some fabric around it so you don’t scratch whilst asleep. Some people even wear a light pair of gloves to prevent their nails from scratching their skin whilst asleep.

You might be in tears trying not to scratch – I’ve been there.  Here are some things that can help:

Nati Melnychuck unsplash

PS I have sourced examples of products for you so that you can easily find them – there’s no obligation to buy these, and you might find them cheaper elsewhere. These links may provide a small affiliate fee, at no extra cost to you, but which will help keep this website running.

Creams and ointments –

There are a number of things I have found which help my skin feel less itchy. I have other conditions which result in me having soft and sensitive skin and these help me. Creams with colloidal oatmeal, such as Aveeno, are really soothing. The oatmeal helps inflammation and provides a barrier that protects irritated skin. You can buy colloidal oatmeal as a separate powder and add it to a bath or your own cream. 

Aveeno is a product works well for deep moisturisation, and has a ‘triple oat complex’ plus shea butter, which you can buy here https://amzn.to/3S4QJWj I recently bought some and it’s working really well for me.

For a lighter version, I use this https://amzn.to/3DMkR4r

Sudocrem is also soothing to skin. It’s really a universal antibacterial cream that is even suitable for babies, and so very kind to your body. The lavender in it is both soothing and has a nice odour. A little goes a long way. It tends to sit on the skin and has a white residue, so may be better for smaller areas, or under clothing for larger areas. It’s also really affordable! You can buy it in supermarkets, chemists or here https://amzn.to/3DLfHFL 

E45 have an itchy skin cream which has a topical anaesthetic that reduces itch. https://amzn.to/3xJ4fH8  

Some antiseptic creams also have topical anaesthetics, such as Savlon https://amzn.to/3SjWq2z . I would suggest caution again, as there are many chemicals and other ingredients which your body might not process well and which could just add to the problem. Perhaps try other creams and gels first, such as colloidal oatmeal. If you have broken skin, perhaps from scratching, then this would help with both relieving the sensation and helping to protect the skin from infection.

Gels and creams with aloe vera can also be soothing. Aloe vera has anti inflammatory and healing properties. Watch out for the added ingredient of menthol though. Many aloe vera preparations are sold with menthol to help cool sunburnt skin, but menthol is poorly processed by people with Gilbert’s Syndrome and it can make you feel unwell. Other preservatives and chemicals can also detract from the benefit of using a natural plant such as aloe. A preparation such as this gel may be a good option to avoid too many added ingredients https://amzn.to/3qWdkZ8

Do test new products on a small amount of skin first though. A small percentage of users of the many aloe products on Amazon experienced red and sore skin after trying a new aloe brand. Do read reviews and decide for yourself. If you’ve already got an after sun cream with aloe vera that you’ve used before with no problems, then perhaps give it a try 

Some people use hydrocortisone creams, which you can get from pharmacies /chemists /drug stores. I would suggest caution here as they can only be used for a short period.  It is a steroid and works on the chemicals that cause itching and redness in the skin. Creams are designed for conditions such as eczema and rashes and can also cause thinning of the skin. (Preparations with antifungals are sold for athletes foot). There’s useful information about hydrocortisone here https://www.nhs.uk/medicines/hydrocortisone-skin-cream/ I would be interested to hear if you have used a hydrocortisone cream for an itch that is definitely just your Gilbert’s Syndrome, and whether it has worked. 

Drugs – 

Steroids  (such as hydrocortisone and applied directly to skin), antihistamines and antidepressants. These can be prescribed or over the counter. I would suggest that they don’t tackle your Gilbert’s Syndrome and may not deal with the itch that relates to your liver function. They may be helpful by acting in another way, perhaps if you have an allergy, or another skin condition such as psoriasis or eczema for example. Your itching may not be down to your Gilbert’s Syndrome don’t forget. If they do help you, it would be great to hear about it.

Some other natural remedies  –

Toa Heftiba unsplash

https://www.stylecraze.com/articles/effective-home-remedies-for-skin-itching/

Bathing with a cup of baking soda may help reduce skin acidity and prove soothing. Both available in most grocery stores. 

Coconut oil in a bath, or massaged onto the skin may help. It has antiinflammatory and antimicrobial properties and is well absorbed. https://nationaleczema.org/blog/get-the-facts-coconut-oil/

For a solid (at room temperature) and unprocessed version with a mild coconut aroma, try this https://amzn.to/3S4hkTf

For a processed version which has no odour or taste you would need a refined version https://amzn.to/3dDGvxe . For one that stays a liquid, then a fractionated option would be your choice eg https://amzn.to/3UoFklE 

Neem is a leaf widely available across India, Pakistan, Bangladesh and Nepal. It is also found in Africa and South America. This plant has been used in medicine for thousands of years.  Neem has many properties, including antimicrobial, antifungal and anti-radical. It may even be analgesic (provide pain relief) and protect the liver (but these studies are in rats not people with Gilbert’s Syndrome).  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791507/

There are many claims for neem as a detox tool. It can be taken as powder, in capsules, in ointments or tinctures or teas. Like many herbal preparations there are few clinical studies of the effect in people, given drug companies aren’t going to make any money from it. Please do read any claims with caution. If you have tried neem, then do share your experience. 

Here’s the oil – and if it doesn’t work for your itch, you can use it on your garden as an insect repellent! https://amzn.to/3xJCgH8

You can use this powder https://amzn.to/3fbKotE in a paste with some water on skin or hair, pop it in a tea or drink, or even brush your teeth with it. 

Mint – some remedies include mint, but the principal cooling effect in mint is menthol, which is not processed well by people with Gilbert’s Syndrome. I am afraid I’ve only had negative effects from mint, peppermint and menthol myself. However, I’ve not tried mint as a herb on skin, plus I don’t seem to have problems with mint in toothpaste (probably as I try not to swallow it!), but mint tea or any food with mint gives me indigestion or makes me feel sick.

Do you have an experience with mint that you can share? 

Other simple solutions that will help with itching and you to stay irritant free

  • Wear soft comfortable clothes washed in an environmentally friendly sensitive skin detergent. The chemicals in your detergent could be adding to your itching issues.  You can find lots of chemical free products over at The Vegan Kind supermarket.
  • Clothes that are 100% organic cotton or bamboo, or tencel (made from renewable birch pulp) can be really good against the skin. 
  • Try not to overheat (not that easy if you are menopausal or there’s a heat wave!), use cooling pads or gentle cloths dampened with cool water and gently pat the skin (don’t rub), for a cooling and soothing sensation. 
  • An ice cube against the skin will cool and numb the skin, if you can tolerate it. 
  • Do not over wash or bathe as this will damage the skin barrier and make the problem worse.
  • Avoid perfumes and moisturisers with chemicals that might irritate your skin. Try detergents, cosmetics and washes that are for sensitive skin. They will be less likely to trigger an itch. 

I hope that you find the tips give you some relief if you experience itching. You might have tried solutions that work for you and which are not mentioned here. Please share your experiences as it’s often the only way that other people with Gilbert’s Syndrome will find help. Please share them in the comments, @GilbertsSyndrom , or email help@gilbertssyndrome.org.uk . I’ll share them out and we can all live better with Gilbert’s Syndrome

Sleep and why you need it

Sleep is fundamental to life. All animals have some sort of pattern of rest that is like sleep, even some plants. Evolution has built sleep into all of us – it is THAT important!

But why? What is sleep for?

Why on earth would it be sensible to be unconscious and vulnerable for part of every day? Surely that would be dangerous and stop us from doing lots of other useful things with our time. 

Even bacteria have active and passive periods. So, it must be really very important. 

Not all animals need the same amount of sleep, varying between 2 hours (for horses) and 19 hours (for some bats).

For humans, although it can depend on your genes, we usually need between 7 and 9 hours of sleep per night.

Sleep is also not necessarily done all in one shift. In fact, human body clocks still operate on the basis of sleeping mostly during the hours of darkness with a nap several hours into the afternoon. Some cultures have maintained that practice, although most of us now push through, kept artificially awake by work and fake sunlight. 

Since the industrial revolution we’ve been denying our body clocks the right to take control and forced ourselves to push through on less and less sleep. This has had a significant impact on our health and wellbeing.

A bunch of really complicated things happen in your brain and body when you sleep:

Firstly, it’s really important for your brain that it has down time to process all the input it has received during the day. The different stages of sleep – which cycle throughout the night, and include REM (rapid eye movement) and nREM (non-rapid eye movement), complete muscular paralysis and changes in body temperature, all perform different functions for the brain. When in REM sleep if we were to scan your brain, then it would look like it was awake! REM and nREM sleep work to process your thoughts and sort out long and short term memory. Have you noticed that if you go without sleep your short term memory is really bad? 

Secondly, by getting complete rest your body repairs itself, your muscles can rejuvenate, your heart muscle relaxes and slows, your blood pressure falls. 

If you don’t get enough sleep you will experience muscle fatigue, inability to concentrate, increased hunger, headaches and longer term are more likely to experience depression, high blood pressure, diabetes, more and worse infections. 

Why is sleep important?

For people with Gilbert’s Syndrome, if you don’t get enough sleep, you are more likely to see an increase in your symptoms – jaundice, nausea, fatigue, foggy brain etc. Other medical conditions which include pain also worsen. IBS can be triggered etc 

A good night’s rest can make all the difference. Without it we can be forgetful, distracted, unmotivated in the short term and suffer chronic disease in the long term.

How can I get better sleep?

Here are nine tips to help you sleep better

1.Your body clock is run by hormones in your body which ebb and flow based on daylight and darkness times. These hormones can be disrupted by artificial light, such as from digital devices. Keep clear of digital devices or switch to a night mode in the hours before sleep.

2. Your body will also heat and cool at different times of day and night to prepare for sleep so temperature is important. Make sure your sleep space is a comfortable temperature for you.

3. Regular interruptions will disrupt your sleep pattern, including shift patterns or changes to your sleep and wake times. Keep a regular sleep time and try to reduce interruptions.

4. Stimulants such as Alcohol, nicotine and caffeine can all interrupt sleep as they disrupt the chemicals in your body that help you sleep. Do avoid them near bed time. For caffeine you may need to avoid it completely or up to 8 hours before bedtime, unless you are genetically predisposed to get rid of it from your body at great speed. 

5. Eating late at night can mean your body is busy trying to digest, which can increase your body temperature, can give you stomach ache and boost your blood sugar just when you don’t need the energy. A small snack is a better option if it’s close to bed time. 

6. Exercising during the day and relaxing in the evening mean you are using up your energy at the right time and giving your system time to wind down. 

7. Don’t drink a vast amount before going to bed or you will be waking up multiple times. If you are having bladder issues then get those treated to prevent being repeatedly woken (for example if you are menopausal). 

8. Do you wake up worrying? Brain spinning and chewing over things? Anxiety is a widely reported symptom of Gilbert’s Syndrome. Keep a pen and paper by your bed and write down things that are bothering you before you go to sleep, or if you wake up. Then put them to one side. Don’t lie awake for more than half an hour worrying, get up and go and do something distracting. Read a book in a dimly lit room, or listen to calming music. 

9. If you are struggling to get enough sleep and can’t pin down why, then keep a sleep journal. Don’t just monitor what sleep you are getting, but what you are doing during the day – eating, exercise, work, play etc. You may find a pattern that you can adapt to promote your sleep. 

You can use this symptom tracker to track your sleep and other activities that may impact your Gilbert’s Syndrome symptoms. 

How much sleep do I need?

Guidelines for an adult have been around 7 to 9 hours per night. Younger people need much more sleep and older people may need less.

However, if your sleep quality is poor, you wake a number of times in the night, have a lot of pain or chronic illness, have a physically demanding or stressful job, you may need to be in bed for longer. You may also benefit from an afternoon nap.

Some people can function well on less sleep, but on the whole, if you have good sleep quality, then 7 hours is a great start. That is the time of being actually asleep, and it doesn’t count tossing and turning for half an hour or dozing for half an hour before you get out of bed. 

If  you don’t get the sleep you need you could put on weight, are more at risk of diabetes, heart disease, depression and are less likely to conceive.

https://www.nhs.uk/live-well/sleep-and-tiredness/why-lack-of-sleep-is-bad-for-your-health/

How can I tell if I’m getting enough sleep?

  • Would you be able to fall asleep 3 hours after waking?
  • Do you need caffeine to function for those first three hours?
  • Is your focus difficult to maintain?

If you answer yes to these, then you may need more sleep and be using caffeine to prop yourself awake. 

If you are feeling regularly headachy, crave sugary or starchy food, and are struggling to face 30 mins of exercise such as a brisk walk, then you definitely need more sleep. 

https://www.sleepfoundation.org/how-sleep-works/how-much-sleep-do-we-really-need

https://www.nhs.uk/live-well/sleep-and-tiredness/how-to-get-to-sleep/

https://www.sleepfoundation.org/how-sleep-works/what-happens-when-you-sleep

To get all the intelligence on sleep that you could need, then I recommend Matthew Walker’s book ‘Why We Sleep: the New Science of Sleep and Dreams

Tips for Gilbert’s Syndrome and holiday celebrations

Here are some tips for a healthy happy celebration if you have Gilbert’s Syndrome, and a free gift from me to you. If you can help with a gift in return, you’ll be supporting the thousands of people who come to this website to find information to help them live better with Gilbert’s Syndrome.

  1. Alcohol can be a pleasure and a pain. If you do drink alcohol, know your limits and if you do choose to drink then decide ahead of time how much and when – don’t get caught up and feel appalling for days afterwards. Read more about alcohol here

2. Rest – if you’re reaching an end of year celebration and holiday, or a celebration after a period of fasting or preparing for a large family gathering, you may be emotionally depleted after a hard year. Be kind to yourself and remember to take time to rest. Your body will feel more tired during winter, for example, due to short daylight hours. Take Vitamin D to support your immune system. Ironically, if you are rested and less stressed your sleep will also be better.

3. Exercise – just 20 to 30 minutes a day in the fresh air will invigorate you. Use it as time to reflect on the things you are grateful for and you’ll have a double boost. Thinking grateful thoughts has been scientifically proven to improve mood for the long term. You’ll be taking care of your body and mind this way. 

4. Eat right – ok, we’re all looking forward to some special foody treats during celebration periods. If you have Gilbert’s Syndrome you are probably already familiar with the ‘food hangover’. Rich, fatty, sugary food = nausea, indigestion and abdominal discomfort. It can leave you feeling sluggish and with brain fog the next day. You don’t have to cut it all out – just don’t overdo it. Again, it’s important to know your limits and work out your toleration levels. Remember to include some of the foods that are really good for people with Gilbert’s Syndrome and may be abundant if you are reaching an end of year celebration: broccoli, cauliflower, greens, brussel sprouts, beetroot etc. See your free gift below…

5. Be kind to others. Kindness actually makes you feel good! There’s science behind that one.

My gift to you is a free recipe booklet with simple recipes that will help you feel healthier and live better with Gilbert’s Syndrome. Yes, it does include a burger, fries and apple crumble AND it’s healthy!!! If you can make a kind gift to help provide life changing advice for people with Gilbert’s Syndrome please click here:


Gilbert’s Syndrome explained – the basics

If you need to share the basics about Gilbert’s Syndrome – here’s a resource for you. Pass it on to friends, family, colleagues or your Doctor’s surgery so that they can understand better what Gilbert’s Syndrome is and perhaps help someone else with Gilbert’s Syndrome understand better too. It’s Gilbert’s Syndrome explained in a nutshell!

https://gilbertssyndrome.org.uk/wp-content/uploads/2020/09/Gilberts-Syndrome-basics-infographic-1.pdf