Detox diets and Gilbert’s Syndrome

I’ve been monitoring the ‘de-tox diet’ phenomenon for many years, and each year my scepticism grows. Avid marketers have spotted a desire for many people to find a solution to the modern malaise of feeling tired and sluggish, and there is a proliferation of products – powders / pills / soups /  excercises / regimes / books / websites / treatments etc that claim to help powerfully cleanse the body and leave you lighter, fresher, and generally bright eyed and bushy tailed.

However, on the one hand many run of the mill Doctors will tell you that the liver does a perfectly good job of dealing with toxins. On the other hand many people feel generally under par much of the time. Although I agree that the liver generally does an excellent job, some of us may need a wee bit more help for our liver to do the job we want it to.  Given the disadvantage that those with Gilbert’s Syndrome experience, with a reduced capacity to process certain toxins, it makes sense to me to look after my diet so that I can help my liver. But I don’t want to burden my body with the shock of suddenly changing my diet to all fruit or liquid or pureed broccoli or whatever. My message would be to make a lifestyle choice to ensure you feel better EVERY day.

So, what can we all agree on?  Well, water is good for you. Drink plenty of it. Alcohol may be ok in small quantities, but personally it makes me feel awful so I avoid it. Caffeine can mess up your blood sugar levels and so reduce your ability to maintain consistent energy, particularly because those with Gilbert’s Syndrome are lacking in an enzyme that needs stable blood sugar levels for it to work properly. Eat little and often to keep your energy up, but make sure you stick to wholefoods such as brown rice, wholemeal bread, crackers, jacket potatoes etc and plenty of vegetables and fruit and not high fat food. This will help you maintain a steady weight, not experience hunger pangs, as well as avoiding over burdening your liver with fat processing. Protein is supposed to help with extra energy. I avoid eating animals and animal products for environmental reasons as well as health and compassionate reasons, so my sources of protein tend to be marmite (full of an awesome range of vitamins), and nut butters, such as peanut butter and cashew butter (high in fat but replace margarine and used as my only source of fat– don’t rule it out completely as your body does need fat), avocado, hemp powder added to soups and dressings, plus lots of soya milk.

Star liver foods include: broccoli, garlic, turmeric, avocado, beetroot, apples, lemons, walnuts.

If you need caffeine then try swapping to green tea which is better at cleansing the liver, and more gentle to your system than coffee.

Don’t forget a little naughty treat is ok. But use it as a reward for staying generally more liver conscious and once a week rather than every day. I like the 80 / 20 rule – stay 80% within a good diet, then the other 20% ain’t so bad.

Helping your liver deal better with toxins

Good news! The detox process of the liver which won’t work as well for people with Gilbert’s Syndrome is called Glucuronidation and this process can be helped with Calcium D-Glucarate, glycine, magnesium, and b vitamins.

  • Calcium D Glucarate can be taken as tablets or capsules, but is also available in apples, brussels sprouts, broccoli, cabbage and bean sprouts.
  • Glycine is an amino acid and in high-protein foods, such as fish, meat, beans, milk, and cheese. Glycine is also available in capsule and powder forms, and as part of many combination amino acid supplements.
  • Spices, nuts, cereals, coffee, cocoa, tea, and vegetables are rich sources of magnesium. Green leafy vegetables such as spinach are also rich in magnesium as they contain chlorophyll. Magnesium supplements are widely available and often with calcium and vitamin c which help its absorption. The best absorbed types of magnesium are citrate and malate, rather than the cheaper form of oxide.
  • B vitamins are available in many different foods (see the NHS website), but the easiest ways of accessing them are through yeast extracts such as Marmite, and fortified cereals.

So why not help yourself and make sure your diet contains a good balance of foods that may help your liver to work better.

Pharmacist survey finds ‘Medicines detox’ puts people at risk

A recent article from Net Doctor has food for thought for those of us on long term medication. Please don’t take initiatives with your medication – talk to your Doctor or Pharmacist first! :

Patients are putting themselves at risk of serious harm by believing it is beneficial to occasionally stop taking long-term medicines in order to given their body a ‘detox’, experts have warned.

Research by the National Pharmacy Association (NPA) suggests that one in five people believe a so-called ‘medicines detox’ is beneficial.

However, the NPA warned that this could be seriously harmful for patients with conditions such as diabetes, asthma or depression, as they could lose control of their illness.

The survey also revealed that nearly one in three people believe it is safe to take non-prescription medicines that have been recommended for other people.

And some wrongly assume it is okay for a child to take an adult’s medication, as long as the dosage is reduced.

NPA head of information Leyla Hannbeck said: ‘There is a lot of misunderstanding about how medicines work in your body.

‘It’s important to get the right treatment and the right advice – which you can get from your local pharmacy, often without an appointment.’

Pharmacies provide a wealth of services in addition to dispensing medicines.

These include the disposal of unwanted medicines, promotion of healthy lifestyles and support for self-care.

Pharmacists can also provide personalised advice on medicines, smoking cessation support and guidance on sexual health.ADNFCR-554-ID-800789373-ADNFCR

General anesthesia in a patient with Gilbert’s syndrome.

Having had an operation this year, with a very understanding anesthesiologist, I know that this is an area of poor knowledge in the health service, and that all the advice you as a patient can offer is helpful, and will of course help yourself. We decided that morphine would be avoided and took an approach that would mean using as few drugs as possible. This also meant I would come out of the procedure more alert and able to get going.

There has been some recent research in India which follows the clinical experience I have personally had – namely that the best outcomes are if the drugs used avoid using the enzyme that people with Gilbert’s Syndrome are deficient in:

Source

Department of Anaesthesiology and Critical Care, Tata Main Hospital (TMH), Jamshedpur, India. Nag DS, Sinha N, Samaddar DP, Mahanty PR.

Abstract

Gilbert’s syndrome, caused by relative deficiency of glucuronyl transferase is the commonest cause of congenital hyperbilirubinemia. We report anesthetic management in a case of Gilbert’s syndrome for laparoscopic cholecystectomy under general anesthesia. Avoiding drugs which use this enzyme for its metabolisim or excretion, and minimizing the stress during the perioperative period allows safe conduct of anesthesia for these patients.

The Liver Diet

Think Raw
Eat plentiful amounts of raw fruits and vegetables, especially dark green leafy vegetables and orange, yellow, purple and red colored fruits and vegetables. Thirty to forty percent of the diet should consist of raw fruits and vegetables. Try to eat some raw fruits or vegetables with EVERY meal as they contain living enzymes, vitamin C, natural antibiotic substances and anti-cancer phytonutrients.

Oil but Don’t Grease Your Body
Avoid the fats that present a high workload for the liver and gall bladder. These are full-cream dairy products, margarines, processed vegetable oils (hydrogenated fats), deep fried foods, foods that are not fresh and contain rancid fats, preserved meats, animal skins and fatty meats. In those with a dysfunctional liver, I recommend avoiding all animal milks and substituting them with oat, rice, almond or soymilks. Eat the “good fats” which contain essential fatty acids in their natural unprocessed form.

These are found in cold pressed vegetable and seed oils, avocados, fish (especially oily fish such as salmon, tuna, sardines, herring, sablefish, flounder, trout, bass and mackerel), shrimp, prawns and crayfish, raw fresh nuts, raw fresh seeds such as flaxseeds (linseeds), sunflower seeds, safflower seeds, sesame seeds, hemp seeds, alfalfa seeds, pumpkin seeds and legumes (beans, peas and lentils). Seeds such as flaxseeds can be ground freshly everyday (in a regular coffee grinder or food processor) and can be added to cereals, smoothies, fruit salads and vegetables. Spirulina, evening primrose oil, black currant seed oil, borage oil and lecithin also contain healthy oils to help the liver. Do not use butter and/or margarine on your breads and crackers. Replace them with tahini, humus, pesto, tomato paste or relish, freshly minced garlic and cold pressed oil (chilli or other natural spices can be added if enjoyed), nut-spreads, fresh avocado, cold pressed olive oil or honey. The good fats are essential to build healthy cell membranes around the liver cells. As we get older we need to “oil” our bodies and not “grease” our bodies.

Think Natural
Avoid artificial chemicals and toxins such as insecticides, pesticides, and artificial sweeteners and colorings, (especially aspartame), flavorings and preservatives. Excess alcohol, particularly spirits, should be avoided.

Be Diverse
Consume a diverse range of proteins from grains, raw nuts, seeds, legumes, eggs, seafood, and if desired, free range chicken (without the skin), and lean fresh red meats. If you do not want to eat red meat or poultry this is quite acceptable as there are many other sources of protein. It is safe to be a strict vegetarian, however you may need to take supplements of vitamin B 12, iron, taurine and carnitine to avoid poor metabolism and fatigue. To obtain first class protein, strict vegetarians need to combine 3 of the following 4 food classes at one meal – grains, nuts, seeds and legumes, otherwise valuable essential amino acids may be deficient. If your body is lacking amino acids you will be fatigued and you may suffer with mood changes, reduced cognitive function, hypoglycaemia, poor immune and liver function and hair loss. I have met many strict vegans who felt unwell because they were lacking amino acids, iron and vitamin B 12, and after supplementing with these nutrients and modifying their diets they quickly regained excellent health.

Let Food Be Your Medicine
Many diseases can be overcome by eating healing foods that contain powerful medicinal properties. Optimal health and the prevention of disease is only possible by including these healing foods regularly in the diet. The healing substances found in certain foods or therapeutically active chemicals are known as phytochemicals. The culinary habits of different cultures have been recognised for decades as being influential in the incidence of diseases. Mediterranean countries have a lower prevalence of cardiovascular diseases because of the protective effect of traditional Mediterranean foods, such as olive oil, tomatoes and legumes. Broccoli and other vegetables in the cruciferous family are known to reduce the risk of bowel cancer, but it is only recently that scientists have isolated the phytochemicals which confer this protection. Broccoli has been found to contain a phytochemical called sulphoraphane, which enhances the phase two-detoxification pathway in the liver.

Tomatoes contain a powerful antioxidant called lycopene, which according to a paper published in the American Journal of Clinical Nutrition (1997:66:116-22), is the most powerful of all the dietary carotenoids. The researchers found that the dietary intake of lycopene was linked to a lower risk of prostate problems. They also found that higher levels of lycopene in the blood lowered the risk of cell proliferation, which would theoretically exert a powerful anti-cancer effect. Cooking or chopping tomatoes increases the absorption of lycopene into the body. Cooking tomatoes in oil increases the availability of the lycopene to the body, which is another reason that Mediterranean cuisine confers health benefits.

Beetroot is a beautiful deep purple colour because it contains the antioxidant anthocyanidin. Constituents of beetroot have been shown to exert anti-viral and anti-tumour effects in animal studies. Other foods, which also exert these properties, although to a lesser degree, are red and green peppers, red onion skins, paprika and cranberry. These foods contain healing phytonutrients such as carotenoids, capsanthin and anthocyanins.

Certain foods have high concentrations of plant hormones, which are known as phytoestrogens. Examples of these are the isoflavones genistein and daidzein (found in soya beans and red clover), and lignans (found in flaxseed). Asian communities consume a high intake of soy (approximately 25 – 50 grams daily), and have a significantly lower incidence of hormone dependent cancers of the prostate, uterus and breast. All legumes such as beans, peas and lentils contain beneficial phytoestrogens.

A study published in the British Medical Journal in 1990, looked at a group of postmenopausal women who were given 45 grams of soy flour for 2 weeks, followed by 25 grams of flaxseed meal for 2 weeks, and then 10 grams of red clover sprouts. This produced improvements in various blood hormone levels and menopausal symptoms.
Asian and Mediterranean cuisines are now integrating themselves into the old fashioned Western diet consisting of meat, bread and 4 vegetables. This culinary multiculturalism has enormous and proven benefits for our health and also for our enjoyment. We all know that variety is the spice of life, and Asian and Mediterranean foods can add spice to our often-bland ways of eating. A wide range of Asian foods is now available from supermarkets and greengrocers as well as Chinese grocery stores. Typical Asian foods and vegetables such as ginger root, chilli, garlic, Chinese water spinach, bok choy, lemongrass, coconut, tumeric, curry, Chinese mushrooms and many others can be experimented with, and gradually introduced into the diet if you want to expand the horizons of your taste buds.

Watch That Sweet Tooth
Use natural sugars from fresh fruits and juices, dried fruits, honey, molasses, fruit sorbets, fruit cakes, fruit jams, carob, date sugar, maple sugar or syrup or rice syrup. Avoid refined white sugar and candies, fizzy drinks, cakes and biscuits made with refined sugars. If you find you crave these foods on a regular basis you may have the very common metabolic imbalance known as Syndrome X. By following the eating principles and taking nutrients to rebalance the metabolism you can get cravings under control making weight loss and maintenance of energy much easier. See ‘Syndrome X’

Rehydrate Your Body
Drink large amounts of fluids such as water, raw juices and teas (green tea, herbal and regular weak tea is fine). Aim for 2 liters of fluid daily and this will avoid constipation problems and help your kidneys to eliminate the toxins that the liver has broken down. Use a household water filter. Water filters with sub-micron, solid carbon block filters are able to remove parasites and many toxic chemicals. Shop around and take a look at different types of filters before you buy and get professional advice as technology is improving rapidly.

The liver is the major organ involved in detoxification, however it is still important to support the other body organs of elimination. The skin and the kidneys eliminate toxins through sweating and urine and this is why saunas and a high intake of filtered water can reduce symptoms of toxic overload.

Go Organic
ALTHOUGH IT IS IDEAL TO BE ABLE TO PURCHASE AND CONSUME ORGANIC PRODUCTS, THIS MAY NOT ALWAYS BE FEASIBLE OR POSSIBLE BECAUSE OF FINANCIAL OR LOGISTICAL REASONS. PLEASE DO NOT BECOME TOO STRESSED BY THIS, AS EVEN IF THE FOOD YOU CONSUME IS NOT ORGANIC, THE TYPES OF FOODS YOU EAT ARE EVEN MORE IMPORTANT !!!

Not many people want to eat fruits and vegetables that have been sprayed repeatedly with insecticides and fungicides, ripened with ethylene gas and perhaps waxed with an insect secretion. It is a little off putting while biting into your lovely red juicy steak to think that this animal may have been fed antibiotics and the ground-up remains of thousands of dead animals, and had potent sex hormones implanted into it to accelerate its growth.

Organic food is sometimes called biodynamic food and is produced without synthetic herbicides, insecticides, fertilisers, post-harvest fungicides, antibiotic growth-promoters, or size enhancing hormones. It relies upon Mother Nature’s forces, recycling of nutrients and sustainable methods of production. Foods certified as organic must be grown on farms that are inspected and fully certified according to a stringent set of standards. Packaged and/or processed organic foods are free from artificial preservatives, colourings, flavourings or additives, and should not contain irradiated or genetically modified ingredients.

Pamper Your Liver
Eat foods to increase nutrients beneficial to liver function.These are:
Vitamin K – green leafy vegetables and alfalfa sprouts. Arginine – this helps the liver to detoxify ammonia, which is a toxic waste product of protein metabolism. Arginine is found in legumes (beans, peas, and lentils), carob, oats, walnuts, wheatgerm and seeds.
Antioxidants – found in fresh raw juices such as carrot, celery, beetroot, dandelion, apple, pear and green drinks like wheatgrass and barley-grass juice, and fresh fruits, particularly citrus and kiwi fruit.

Selenium – sources of the antioxidant selenium are brazil nuts, brewers yeast, designer yeast powders (very good source), kelp, brown rice, molasses, seafood, wheatgerm, whole-grains, garlic and onions.

Methionine – is essential for detoxification. Is found in legumes, eggs, fish, garlic, onions, seeds and meat.

Essential fatty acids – Seafood, cod liver oil, and fish oil. Seafood may be fresh, canned or frozen such as sardines, salmon, mackerel, tuna, trout, mullet, blue mussels, calamari, tailor, herring, blue eye cod, gemfish. Fresh avocado, fresh raw nuts and seeds, legumes (beans, peas, lentils), wholegrain, wheatgerm, green vegetables such as spinach, green peas and green beans, eggplant, cold pressed fresh vegetable and seed oils, freshly ground seeds, especially flaxseeds (linseed), evening primrose oil, black-currant seed oil, star flower oil. Essential fatty acids are required for healthy membranes in every cell of the body and plentiful amounts are required for healthy liver function. This is why strict low fat diets are not beneficial for general health, weight control or liver function.
Natural sulphur compounds – are found in eggs (preferably free range), garlic, onions, leeks, shallots and cruciferous vegetables such as broccoli, cauliflower, cabbage andBrussels sprouts.

Practice Good Hygiene
The liver filter removes microorganisms from the blood stream, which prevents them from getting deeper into the body where they may cause serious infections. To avoid overloading the liver filter it is important to avoid eating foods that are contaminated with high loads of unfriendly or dangerous (pathogenic) microorganisms.
Although standards of living and sanitation have improved, cases of food poisoning from parasites, bacteria and viruses have been gradually increasing. This is often due to poor hygiene, such as inadequate cleansing of areas where food is prepared and stored, and lack of hand washing before preparing and eating food. This is more common today because people have a false sense of security brought about from antibiotic drugs, however many new viruses and pathogenic bacteria resistant to antibiotics are emerging.

The excessive practise of feeding antibiotics to animals is contributing to the rising incidence of antibiotic resistant strains of bacteria such as E.coli, Staphylococcus and Salmonella. Other microorganisms that can cause food poisoning are Campylobacter, Listeria, Yersinia, Clostridium Botulinum and Shigella. Food poisoning can also occur from the toxins produced by some bacteria, algae and moulds. Shellfish grown in waters polluted with toxic algae bloom can accumulate their toxins, which can cause severe neurological dysfunction. Foods contaminated by certain moulds or fungi, which produce their own mycotoxins, can make you sick. The fungus Aspergillus flavus produces the dangerous mycotoxin called aflotoxin. This can grow on damp maize, wheat, corn, peanuts and some other crops.

People are eating out more and there is less cooking done in the home so it is difficult to control standards of food preparation for your family. People purchase foods from supermarkets where food may have travelled long distances and be stored or refrigerated for long periods, picking up microorganisms along the way. Many processed foods contain

preservatives, which do not eradicate microorganisms, but merely keep them in a dormant state. When this food gets into your intestines the preservatives are diluted and the bugs start to multiply. This is why it is important to purchase only fresh high quality foods. The risk of food contamination is increased by long storage times, the number of people who handle and package food, and inadequate cooling and re-heating temperatures.

The intensive mass production of animal meats has helped to spread infections in food supplies. Chickens fed stock-feed infected with the bacteria Salmonella (sometimes from the remains of other chickens), allow bacteria to recycle and multiply in the same way that cow cannibalism caused the epidemic of mad cow disease (BSE). Chickens infected with Salmonella or viruses, and other animals reared in crowded conditions, can easily cross-infect each other while alive or at the abattoir.

Tips For Good Hygiene
Wash your hands thoroughly with soap and hot water before preparing and eating food, and after handling any raw meat or seafood.

Only purchase fresh foods and avoid foods that are mouldy or look too old. Avoid processed or preserved meats such as hamburger meat, ham, smoked and pickled meats and fish, beef jerky, bacon, sausages, fritz, cabanossi, pizza meats, corned beef, meat loaf, rolled meats as found in delicatessens, and sea food that has been mishandled or poorly stored.

Do not let food stand in warm temperatures for more than two hours. Hot foods should be cooled quickly at room temperature and then refrigerated, because gradual cooling allows microorganisms to grow. For the same reasons, do not eat food that has been cooked, cooled and reheated more than once.

Refrigerate raw meat, seafood or chicken as soon as possible to reduce bacterial multiplication. Defrost poultry, seafood or meat in a microwave oven or overnight in the refrigerator and not on a counter. Cook all poultry, seafood and meat thoroughly because the centre of the food must reach 70°C (158°F) to kill bacteria.
Store raw meat and poultry at a lower level in the refrigerator to avoid their juices contaminating other foods. Always refrigerate eggs and foods containing eggs, and discard eggs with cracks.

Avoid nuts with mould on their shell or kernel, or those with a bitter taste.
Use antiseptics when cleaning the toilet, bath and shower recess. Antiseptic soaps can be used in large households or share type accommodation. Tea tree oil has useful antiseptic properties, and effective antiseptics are easily found in supermarkets and pharmacies at reasonable prices.

Avoid sharing toothbrushes and razor blades as serious blood borne infections can be transmitted this way.e nails with a nailbrush can remove inaccessible bacteria.
Wash kitchen utensils such as cutting boards, grinders, juicers, and blenders and can openers thoroughly after each use. Replace cloths and brushes regularly.

Jaundice

WHAT IS JAUNDICE?

The word “jaundice” comes from the French word jaune, which means yellow.

Jaundice is a yellowish staining of the skin, the whites of the eyes, and mucous membranes by bilirubin, a yellow-orange bile pigment. Bilirubin (read more about it here!) comes mainly from the breakdown of red blood cells, and is basically a waste product that your liver gets rid of.

Jaundice usually appears when the bilirubin in your blood is more than 3 mg per dL (51.3 µmol per L). The classic definition of jaundice is a serum bilirubin level greater than 2.5 to 3 mg per dL (42.8 to 51.3 µmol per L) as well as having yellow skin and eyes.

Your body processes bilirubin in 3 phases: prehepatic (before it gets to the liver), intrahepatic(whilst in the liver), and posthepatic(after leaving the liver). If any of these aren’t working properly you can become jaundiced.

PREHEPATIC

The human body produces about 4 mg per kg of bilirubin per day, from the breakdown of blood cells. Bilirubin is then transported from to the liver for conjugation (where it needs to link up with other enzymes and chemicals so that it can be removed from the body) .

INTRAHEPATIC

Unconjugated bilirubin (the bilirubin that hasn’t been removed by linking up with an enzyme) doesn’t dissolve in water but is soluble in fats. That means it can easily cross the blood-brain barrier or enter the placenta. The unconjugated bilirubin is conjugated (linked up with) with a sugar via the enzyme glucuronosyltransferase (the enzyme that people with GS don’t have enough of) and is then soluble in the bile.

POSTHEPATIC

Once soluble in bile, bilirubin is transported through to the gallbladder, where it is stored, or passed on to the duodenam. Inside the intestines, some bilirubin is excreted in the stool, while the rest is dealt with by the bacteria in your gut.

JAUNDICE AND OTHER SYMPTOMS

Some people with jaundice have no symptoms at all.  But some may have an acute illness, which is frequently caused by infection, may seek medical care because of fever, chills, abdominal pain, and flu-like symptoms. For these patients, the change in skin color may not be their greatest concern!

Patients with noninfectious jaundice may complain of weight loss or itching / skin discomfort. Abdominal pain is the most common symptom in patients with pancreatic or biliary tract cancers.Even something as nonspecific as depression may be a symptom in patients with chronic infectious hepatitis and in those with a history of alcoholism.

‘False’ jaundice can happen if you eat foods rich in beta-carotene (e.g., squash, melons, and carrots). Unlike true jaundice, you don’t get yellow eyes, or changes in bilirubin level.

CAUSES OF JAUNDICE:

PREHEPATIC CAUSES

Unconjugated hyperbilirubinemia (this is when you’ve too much bilirubin in your bloodstream because it’s not been processed in the liver, as in Gilbert’s Syndrome) might happen before bilirubin has entered the liver cells or within the liver cell. If you’ve had an unusual breakdown in your red blood cells then there may be too much of the waste product, bilirubin, for your liver to process as normal.

This will usually result in mild bilirubin elevation, to about 5 mg per dL (85.5 µmol per L), with or without clinical jaundice. The blood might be breaking down because of a number of causes in the blood cells or your enzymes which mean your red cells have stayed alive longer than normal, and built up.  Other causes include autoimmune disorders, drugs, and defects in hemoglobin structure such as sickle cell disease and the thalassemias.

INTRAHEPATIC CAUSES

Un-Conjugated Hyperbilirubinemia Gilbert syndrome is a common, benign, hereditary disorder that affects approximately 5 percent of the U.S. population. It usually results in a mild decrease in the activity of the enzyme glucuronosyltransferase. Gilbert syndrome is typically an incidental finding on routine liver function tests, when the bilirubin level is slightly increased and all other liver function values are within normal limits. Jaundice and further elevation of the bilirubin level may occur during periods of stress, fasting, or illness.

Conjugated Hyperbilirubinemia. Main causes are when there’s a blockage preventing bilirubin from moving into the intestines. Viruses, alcohol, and autoimmune disorders are the most common causes of hepatitis. Inflammation also disrupts transport of the bilirubin and causes jaundice.

Hepatitis A can cause acute onset of jaundice. Hepatitis B and C infections often do not cause jaundice straight away, but can lead to jaundice when chronic infection has led to liver cirrhosis. Epstein-Barr virus infection occasionally causes hepatitis and jaundice that resolve as the illness clears.

Alcohol has been shown to affect bile acid uptake and secretion, stopping the normal flow through the liver. Chronic alcohol use may result in fatty liver (steatosis), hepatitis, and cirrhosis, with varying levels of jaundice. Fatty liver, the most common liver problem, usually results in mild symptoms without jaundice but occasionally progresses to cirrhosis. Hepatitis secondary to alcohol use typically presents with acute onset of jaundice and more severe symptoms.

More rare conditions that can cause jaundice: Autoimmune hepatitis traditionally has been considered a disease that affects younger persons, especially women. Two serious autoimmune diseases that directly affect the biliary system without causing much hepatitis are primary biliary cirrhosis and primary sclerosing cholangitis. Primary biliary cirrhosis is a rare progressive liver disease that typically presents in middle-aged women. Fatigue and itching / skin discomfort are common initial complaints, while jaundice happens later. Primary sclerosing cholangitis, which is also rare, is more common in men; nearly 70 percent of patients also have inflammatory bowel disease. Dubin-Johnson syndrome and Rotor’s syndrome are rare hereditary metabolic defects that disrupt transport of conjugated bilirubin.

Common drugs can also cause problems, such as acetaminophen, penicillins, oral contraceptives, anti-psychotic medication, and steroids. Cholestasis can develop during the first few months of oral contraceptive use and may result in jaundice.

POSTHEPATIC CAUSES

Gallstones in the gallbladder are fairly common in adults. Obstruction within the biliary duct system can inflame the gallbladder, and can lead to infection. Cholangitis is diagnosed clinically by the classic symptoms of fever, pain, and jaundice, known as Charcot’s triad. Cholangitis most commonly occurs because of an impacted gallstone, which might then be removed.

Biliary tract tumors are uncommon but serious causes of posthepatic jaundice. Gallbladder cancer classically presents with jaundice, enlarged liver, and a mass in the right upper quadrant (Courvoisier’s sign). Another biliary system cancer, cholangiocarcinoma, typically manifests as jaundice, itching / skin discomfort, weight loss, and abdominal pain. It accounts for roughly 25 percent of hepatobiliary cancers.

Jaundice also may arise with pancreatitis. The most common causes of pancreatitis are gallstones and alcohol use. Gallstones are responsible for more than one half of cases of acute pancreatitis, which is caused by obstruction of the duct that drains the biliary and pancreatic systems.

Evaluation

The initial work-up of the patient with jaundice depends on whether the hyperbilirubinemia is conjugated (direct) or unconjugated (indirect). A urine anlysis that is positive for bilirubin indicates the presence of conjugated bilirubinemia. Conjugated bilirubin is water soluble and so passed through urine.

SO IF YOU’RE JAUNDICED WHAT DO THEY DO TO WORK OUT WHAT’S CAUSING IT? Here’s the clinical information :

BLOOD TESTING

First-line serum testing in a patient presenting with jaundice should include a complete blood count (CBC) and determination of bilirubin, aspartate transaminase (AST), alanine transaminase (ALT), gamma-glutamyl transpeptidase, and alkaline phosphatase levels.

Depending on the results of the initial tests, further serum tests or imaging studies may be warranted. The second-line serum investigations may include tests for hepatitis A IgM antibody, hepatitis B surface antigen and core antibody, hepatitis C antibody, and autoimmune markers such as antinuclear, smooth muscle, and liver-kidney microsomal antibodies. An elevated amylase level would corroborate the presence of pancreatitis when this condition is suspected based on the history or physical examination.

IMAGING

Ultrasonography and computed tomographic (CT) scanning are useful in distinguishing an obstructing lesion from hepatocellular disease in the evaluation of a jaundiced patient. Ultrasonography is typically the first test ordered, because of its lower cost, wide availability, and lack of radiation exposure, which may be particularly important in pregnant patients. While ultrasonography is the most sensitive imaging technique for detecting biliary stones, CT scanning can provide more information about liver and pancreatic parenchymal disease. Neither is good at finding stones inside the ducts.

Further imaging that may be done by a gastroenterologist or interventional radiologist includes endoscopic retrograde cholangiopancreatography and percutaneous transhepatic cholangiography.

LIVER BIOPSY

A liver biopsy provides information on the architecture of the liver and is used mostly for determining prognosis. It also may be useful for diagnosis if serum and imaging studies do not lead to a firm diagnosis. Liver biopsy can be particularly helpful in diagnosing autoimmune hepatitis or biliary tract disorders (e.g., primary biliary cirrhosis, primary sclerosing cholangitis).

Bilirubin explained

Bilirubin explained

All about Bilirubin.

If you’ve been diagnosed with Gilbert’s Syndrome, then you’ve most probably been told that your bilirubin levels were high.  It’s one of the most common ways of determining that a patient has Gilbert’s Syndrome, and usually happens after general blood tests.

But what is Bilirubin, what does it do and will it harm us? 

Bilirubin comes from the blood when blood cells become old, and die.  Hemaglobin, the substance in blood that carries oxygen, is broken down to heme and globin and is passed onto the liver. Bilirubin is formed from the heme part of hemaglobin, and is a bright greenish yellow colour.

The bilirubin is not water soluble when it gets to the liver, and needs an enzyme to become so, then it can be easily passed out of the body.  The water soluble substance now passes through the gall bladder as bile and into the small intestine where it continues to be processed by bacteria in the intestines, and is passed out through the faeces and urination.

This enzyme that makes the bilirubin water soluble is called glucuronyl transferease, known as UGT for short, and is what people with Gilbert’s Syndrome are genetically lacking.  This means that the bilirubin is not ‘conjugated’ or converted so that it can easily leave the body.

The enzyme also uses blood sugar to help in processing bilirubin, which is one reason why missing meals can affect you.  It’s best to ensure you have regular small meals, and cut down on unrefined sugar and carbohydrates like white bread and pasta, so that the amount of enzyme you have can always have a stable supply of blood sugar to do its job.

There is always some bilirubin that is in the blood but this is chemically different from the ‘conjugated’ bilirubin.  GS sufferers however, have a lot more of this ‘unconjugated’ bilirubin because it hasn’t been disposed of as it should through the usual process. It’s the difference between the 2 types that tips off those conducting the lab tests on your blood that you have GS.

When bilirubin builds up in the blood at more than around 2.5mg/dl, then the skin and eyes become discoloured with yellow, otherwise know as jaundice. There are a number of reasons bilirubin builds up in the blood other than the lack of the enzyme, and it’s important to rule those out before diagnosing Gilbert’s Syndrome.  For example the patient’s bile duct could be blocked, or they could have a type of anaemia, or hepatitis.

Drugs can also affect the measurements of bilirubin, and many can increase it such as  steroids, some antibiotics, antimalarials, codeine, diuretics, MAO inhibitors, nicotinic acid, oral contraceptives, and others.  Drugs that decrease bilirubin measurements include barbiturates, caffeine, penicillin and high dose salicylates.

You’re likely to be diagnosed between the age of 10 and 30.  Males are more likely to have Gilbert’s Syndrome than females, and there are some slight differences in the gene depending on racial background.  Many people will not even notice they have it.

Glucuronidation – where Gilbert’s Syndrome works in your liver

Glucuronidation
The UGT enzyme (that people with Gilbert’s Syndrome don’t have so much of) works in one particular part of your liver and is responsible for the part (or pathway) of your liver’s processing called ‘glucuronidation’. Glucuronidation happens when toxins are bound to glucuronic acid which is produced by the liver. Chemicals processed by glucuronidation include common opiate based drugs used in pain relief or during surgery  (Liston, H.; Markowitz, J.; Devane, C. (2001). “Drug glucuronidation in clinical psychopharmacology”. Journal of clinical psychopharmacology). Other things that affect glucuronidation include smoking, obesity, age and gender.

You can find a list of drugs affected here: https://en.wikipedia.org/wiki/Glucuronidation#General_influencing_factors

Some herbal supplements may help glucuronidation (Effects of herbal supplements on drug glucuronidation. Review of clinical, animal, and in vitro studies. March 2011 Mohamed ME, Frye RF.Department of Pharmacotherapy and Translational Research, College of Pharmacy, University of Florida, Gainesville, Florida 32610, USA.)The use of herbal supplements has increased steadily over the last decade. Recent surveys show that many people who take herbal supplements also take prescription and nonprescription drugs, increasing the risk for potential herb-drug interactions. In vitro and animal studies indicate that cranberry, gingko biloba, grape seed, green tea, hawthorn, milk thistle, noni, soy, St. John’s wort, and valerian are rich in phytochemicals that can modulate UGT enzymes. However, the IN VIVO consequences of these interactions are not well understood. Only three clinical studies have investigated the effects of herbal supplements on drugs cleared primarily through UGT enzymes. The need for further research to determine the clinical consequences of the described interactions is highlighted.

Essential for Glucuronidation are the nutrients L-glutamine, aspartic acid, iron, magnesium, B3 (niacin) and B6. Thyroid should also be adequate. Cruciferous vegetables (cauliflower, cabbage, cress, bok choy, broccoli and similar green leaf vegetables) are helpful. Glucuronidation efficiency can be improved by calcium-d-glucarate. However, you have to start very gradually with the calcium-d-glucarate, and be very consistent.

You can find out more about glucuronidation here https://youarethehealer.org/health-conditions/optizmize-your-health/detox-biotransformation-pathways/glucuronidation/

Itching and Gilbert’s Syndrome

Many people who have Gilbert’s Syndrome experience itching, which doesn’t seem to be related to any obvious cause and has no visible rash.  I myself have been through the obvious checklist many times: washing powder; cosmetics; food; perfume, but nothing had ever changed as, knowing I itch at the drop of a hat, I’m very careful regarding anything I could be allergic to.

BUT…what if it isn’t any kind of allergy?

The idea never occurred to me  until Adina let me know that it was a query that had come up several times with Gilbert’s Syndrome sufferers.  I have had a look at the information available to the general public and here are some of the interesting facts I found on the subject:-

www.nhsdirect.nhs.uk states that “general itching may be a symptom of many conditions, including…some condition affecting your liver…”  The conditions mentioned include more serious liver conditions than GS in terms of prognosis but this doesn’t rule it out as is it not stated that itching is not a GS syptom.

www.netdoctor.co.uk says of primary biliary cirrhosis that the symptoms are identical to any other chronic liver problem – itching, aches and low energy.  Chronic means long term, Gilbert’s Syndrome is a chronic liver problem, so again, this is indicative that the itching we experience is a symptom of our GS.

I also found some information on the British Liver Trust website (www.britishlivertrust.org.uk) that may explain WHY itching occurs in GS, through an explanation of a different liver condition:-

Itching is stated as a symptom of cholestasis, which is a reduction in the flow of bile from the liver.  This causes bile salts to build up in the blood, be deposited in the skin and cause itching.  Bilirubin increases are suggestive of problems with the bile duct.  Gilbert’s Syndrome is diagnosed due to a long term increase in bilirubin, also classified as ‘bile level’ in blood tests of liver function.

In Gilbert’s Syndrome bilirubin is raised due to lack of an enzyme rather than a blockage of the bile duct.  It was not clear to me from the information I had found so far if an increase in bilirubin goes hand in hand with an increase in bile salts or whether the two are mutually exclusive.  So I read further…

I found quite a lot of work which links bilirubin and bile salts, for example www.revision-notes.co.uk/revision/859.html , in describing the process of bile secretion, states of bile “It is an alkaline, mucous fluid containing bile pigments, biliverdine and bilirubin.  Bile also contains bile salts…”

However, I have not been able to find anything that specifically states that bile salt levels are raised in Gilbert’s Syndrome or whether bilirubin can be increased without bile salts being raised.  It is always stated that of all liver function tests only bilirubin is raised in GS which suggests levels of bile salts are normal, although I do not know if this is tested separately.  If this is the case it is possible that bile salts may fluctuate, even if within normal limits at testing, causing itching on occasion but not constantly.  This is pure speculation but I hope gives us something to think about and ask our GPs next time we have a consultation.

By contributor Nicola Southworth

The menopause as a trigger of Gilbert’s Syndrome symptoms

One of the major roles of the liver is to process hormones.  It is therefore not irrational to suppose that the menopause may have some effect on a woman’s experience of Gilbert’s Syndrome (and vice versa) due to the enormous hormonal changes and fluctuations that cause it.

During the menopause the ovaries are less able than before to respond to the pituitary hormones follicle stimulating hormone (FSH) and luteinising hormone (LH), and so less oestrogen is produced.  Due to the reduction of oestrogen production some androgens that are still produced by the adrenal glands, such as testosterone, are not overridden as they were before the onset of the menopause.

This means there is a major shift in the balance of hormones in the body, with an increase of FSH, LH and androgens for the liver to process.

Scouring the recently published scientific research I could not find any article that had investigated the effects of these changes on people with liver conditions.  Common sense suggests that these changes would be an immense shock to the liver (we only have to look at all the other effects on the body to understand that this is a huge physical change).  As the liver metabolises hormones and deactivates them when they are no longer useful, it has an increased workload with the excess FSH, LH and androgens.  It seems highly possible that this extra strain on the liver of someone with Gilbert’s Syndrome would bring to the fore Gilbert’s Syndrome symptoms that had not previously been recognised when the liver was used to the hormonal balance of the body.

Many symptoms of the menopause and of Gilbert’s Syndrome are very similar and so these symptoms may be enhanced in someone with Gilbert’s Syndrome.  For example, the insomnia or disrupted sleep caused by other menopause symptoms, such as hot flushes, can lead to fatigue and generalised aches and pains, common symptoms of Gilbert’s Syndrome.  Other symptoms common to both include dizziness and difficulty with cognitive tasks, such as concentration and memory.

Finally, a word about medication.  The most commonly used treatment to ease the effects of the menopause is HRT.  As yet, we are not fully aware of the exact effects many medications have in relation to GS.  We know some medications are processed differently by GS sufferers and so anyone taking any medication who has GS should be aware of this.  There is evidence that HRT can affect bile composition (http://hcd2.bupa.co.uk), which may have implications for GS sufferers.  It may, therefore, be worth being aware of these scant facts when consulting the GP, in order for them to give the best possible advice for the individual.

Unfortunately, as yet, there are no answers to the dual problem of the menopause with Gilbert’s Syndrome, apart from the advice to everyone with Gilbert’s Syndrome: to do everything in our power to reduce the workload of our liver

(originally written by contributor Nicola Southworth)

Milk Thistle (Sylbum marianum )

The medicinal use of milk thistle can be traced back to ancient Greece and Rome.  Today researchers around the world have completed more than 300 scientific studies that attest to the benefits of this herb, particularly in the treatment of liver ailments.

Common uses:

  •        Protects liver from toxins, including drugs, poisons and chemicals.
  •        Treats liver disorders such as cirrhosis and hepatitis
  •        Reduces liver damage from excessive alcohol.
  •        Aids in the treatment and prevention of gallstones
  •        Helps to clear psoriasis.

Forms : capsule, tablet, tincture.

What it is.

Know by its botanical name, Silybum marianum, as well as by its main active ingredient, sylmarin, milk thistle is a member of the sunflower family, with purple flowers and milky white leaf veins.  The herb blooms from June to August, and the shiny black seeds used for medicinal purposes are collected at the end of the summer.

What it does.

Milk thistle is one of the most extensively studied and document herbs in use today.  Scientific research continues to validate its healing powers, particularly for the treatment of liver-related disorders.  Most of its effectiveness stems from a complex of three liver-protecting compounds, collectively know as silymarin, which constitutes 4% to 6% of the ripe seeds.

Major benefits.

Among the benefits of milk thistle is its ability to fortify the liver, one of the body’s most important organs.  The liver processes nutrients, including fats and other foods.  In addition it neutralises, or detoxifies many drugs, chemical pollutants and alcohol.  Milk thistle helps to enhance and strengthen the liver by preventing the depletion of glutathione, an amino acid-like compound that is essential to the detoxifying process.  Moreover, studies have shown that it can increase glutathione concentration by up to 35%.  Milk thistle is an effective gatekeeper, limiting the number of toxins which the liver processes at any given time.  The herb is also a powerful antioxidant.  Even more potent than vitamins C and E, it helps to prevent damage from highly reactive free-radical molecules.  It promotes the regeneration of new liver cells which replace old and damaged one.  Milk thistle eases a range of serious liver ailments, including viral infections (hepatitis) and scarring of the liver (cirrhosis).  The herb is so potent that it is sometimes given in an injectable form in hospital resuscitation rooms to combat the life-threatening, liver-obliterating effects of poisonous mushrooms.  In addition, because excessive alcohol depletes glutathione, milk thistle can aid in protecting the livers of alcoholics or those recovering from alcohol abuse.

 Additional benefits.

In cancer patients, milk thistle limits the potential for drug-induced damage to the liver after chemotherapy, and it speeds recovery by hastening the removal of toxic substances that can accumulate in the body.  The herb also reduces the inflammation and may slow the skin-cell proliferation associated with psoriasis.  It may be useful for endometriosis (the most common cause of infertility in women) because it helps the liver to process the hormone oestrogen, which at high levels can make pain and other symptoms worse.  Finally, milk thistle can be beneficial in preventing or treating gallstones by improving the flow of bile, the cholesterol-laden digestive juice that travels from the liver through the gall bladder and into the intestine, where it helps to digest fats.

How to take it.

Dosage :  The recommended dose for milk thistle is up to 200mg of standardised extract (containing 70% to 80% silymarin) three times a day; lower doses are often very effective.  It is often combined with other herbs and nutrients, such as dandelion, choline, methionine and inositol.  This combination may be labelled ‘liver complex’ or ‘lipotropic factors’.  For proper dosage follow the instructions on the packet.

Guidelines for use : Milk thistle extract seems most effective when taken between meals.  However, if you want to take the herb itself, a tablespoon of ground milk thistle can be sprinkled over breakfast cereal once daily.  Milk thistle’s benefits may be noticeable within a week or two.  The herb appears to be safe, even for pregnant and breastfeeding women.  No interactions with other medications have been noted.

Possible side effects : Virtually no side effects have been attributed to the use of milk thistle which is considered one of the safest herbs on the market.  However in some people it may have a slight laxative effect for a day or two.

Buying guide.

To ensure you are getting the right dose buy products made from standardised extracts that contain 70% to 80% silymarin, milk thistle’s active ingredient. Studies show that preparations containing milk thistle bound to phosphatidylcholine, a constituent of the natural fatty compound lecithin, may be better absorbed than ordinary milk thistle.

When taking milk thistle to alleviate liver damage from excessive alcohol, avoid alcohol based tinctures as they can weaken the resolve to break the addiction.

Recent Findings.

Milk thistle may be a weapon in the fight against skin cancer.  Researchers at Case Western Reserve University in Cleveland, Ohio, found that when the active ingredient, silymarin, was applied to the skin of mice, 75% fewer skin tumours resulted after the mice were exposed to ultra violet radiation.  More studies are needed to see if it has a similar effect in humans.

Final fact.

The components of milk thistle are not soluble in water, so teas made from the seeds usually contain few of the herb’s liver-protecting ingredients.

Alcohol and Gilbert’s Syndrome

People with Gilbert’s Syndrome can experience unpleasant reactions when they drink alcohol, although it doesn’t bother some people at all. Here is what happens in the body when you drink:

Alcohol is metabolized extremely quickly by the body – absorbed and metabolized before most other nutrients. About 20% is absorbed directly across the walls of an empty stomach and can reach the brain within one minute.

Once alcohol reaches the stomach, it begins to break down with the alcohol dehydrogenase enzyme. This process reduces the amount of alcohol entering the blood by approximately 20%. (Women produce less of this enzyme, which may help explain why women become more intoxicated than men).

About 10% of the alcohol is expelled in the breath and urine.

Alcohol is rapidly absorbed in the upper portion of the small intestine. The alcohol-laden blood then travels to the liver via the veins and capillaries of the digestive tract, which affects nearly every liver cell. The liver cells are the only cells in our body that can produce enough of the enzyme alcohol dehydrogenase to oxidize alcohol at an appreciable rate.

Though alcohol affects every organ of the body, it’s most dramatic impact is upon the liver. The liver cells normally prefer fatty acids as fuel, and package excess fatty acids as triglycerides, which they then route to other tissues of the body. However, when alcohol is present, the liver cells are forced to first metabolize the alcohol, letting the fatty acids accumulate, sometimes in huge amounts. Alcohol metabolism permanently changes liver cell structure, impairing the liver’s ability to metabolize fats. This is why heavy drinkers develop fatty livers.

The liver can deal with about ½ ounce of ethanol per hour (about one drink, depending on a person’s body size, food intake, etc.). If more alcohol arrives in the liver than the enzymes can handle, the excess alcohol travels to all parts of the body, circulating until the liver enzymes are finally able to process it.

If you are looking after your liver, then it pays to not drink alcohol!

For people with Gilbert’s Syndrome alcohol will likely raise bilirubin levels, and can result in a hangover that’s pretty quick to appear and may last for days.

The difference between men and women with gilbert’s syndrome

It is estimated that 3-10% of the general population have Gilbert’s Syndrome. Males are more frequently affected than females (12.4% and 4.8% respectively). Bilirubin concentration in men is significantly higher, which could be because they have a greater bilirubin load per kilo of their bodies.

One trigger for Gilbert’s Syndrome symptoms may be hormone fluctuations such as those which occur during menopause. I’ve also found that monthly cycles can also trigger symptoms. You can read more about how the liver processes hormones here: https://www.amchara.com/hormones/how-liver-function-affects-hormone-balance#Female%20Hormone%20Metabolism

Diagnosing Gilbert’s Syndrome

People with Gilbert’s Syndrome are often diagnosed after a blood test shows a high level of bilirubin in their blood. You may have gone to the Dr with an unrelated problem, or have presented with a number of symptoms such as feeling tired all the time, feeling sick, jaundice (yellow skin or eyes), abdominal pain, IBS, lack of concentration, and generally feeling unwell. At least 30% of people with Gilbert’s Syndrome may have no symptoms at all.

The Dr will first rule out other liver problems, usually through liver function tests on your blood which will show if the liver is damaged as well as checking the level of bilirubin, and provided you have no other easily identifiable problem you may be diagnosed with Gilbert’s Syndrome.

Sometimes tests are conducted before and after a 48 hour fast as this seems to really raise the bilirubin levels in people with Gilbert’s Syndrome. Bilirubin levels in people with Gilbert’s Syndrome can change over time, and so may be missed if they happen not to be raised at the time of the blood test. Bilirubin is measured in millimoles per litre (umol/L). Total serum bilirubin higher than 17 umol/L is outside the normal range.  The bilirubin typically fluctuates in the range of 20 – 40 mmol/L although normal values may occur, and results as high as 80 mmol/L may be seen in patients who have not consumed food for several days. Gilbert’s Syndrome is the most common cause of raised bilirubin levels, however there are rare and more serious conditions such as Criglar-Najjar Syndrome which is inherited from the same gene.

Very rarely a liver biopsy may be performed to rule out other liver conditions, and you may also be offered genetic testing.

Unfortunately, after diagnosis you are likely to be offered little help to deal with your symptoms. However, if you are experiencing nausea, IBS, or other problems you may be prescribed medication that can help.  For other symptoms, well, we’re here to help and hopefully some of the information on this website will help you live better with Gilbert’s Syndrome.

 

Gilbert’s Syndrome in Young People

It is possible that the reason for the syptoms of Gilbert’s Syndrome becoming obvious at puberty could be similar to the reason they can become more obvious at  the onset of the menopause – hormones.  One of the major roles of the liver is to process and metabolise hormones.

At the onset of puberty the hypothalamus (part of the brain) produces gonadotrophin-releasing hormone.  This stimulates the pituitary gland (also in the brain) to emit follicle stimulating hormone and luteinising hormone.  In boys, when these hormones arrive at the testes they trigger production of testosterone.  This travels round the body and initiates puberty.  In girls when the follicle stimulating hormone and luteinising hormone reach the ovaries they trigger the release of oestrogen and progesterone.  The oestrogen initiates puberty whilst the progesterone prepares the body for pregnancy.  This means there is a major shift in the balance of hormones in the body, which the liver has to process.

These hormonal changes have a huge effect on the whole person, from changes in the appearance of the body to mood swings, and also the emotional aspect of dealing with sudden bodily changes.  With the hormones having such a massive affect on anyone going through puberty it is not difficult to imagine that the changes stress the liver as well, making Gilbert’s Syndrome symptoms more obvious and harder to deal with along with everything else that is happening at this time.

For children and teenagers with Gilbert’s Syndrome it is an unfortunate reality that they have to be emotionally mature more quickly than others.  The key to controlling Gilbert’s Syndrome is to be sensible, which isn’t really what being a child or a teenager is all about, and young people’s brains aren’t wired to be careful. It is possible to carry on with activities and sports but this may have to be balanced off against other things.  The best way to do this and ensure that the symptoms of Gilbert’s Syndrome are not suffered, is not to stress the liver in any way.  The more you take charge of your lifestyle the more choices you have for what activities you want to do.

This responsibility will fall to parents in the case of younger children and may involve having to deny treats, in the form of sugary and refined food/drink and making sure the children get lots of sleep.  Having said all that there is no major harm in occasional treats or late nights as long as it is understood and acknowledged that it may have an effect on energy.  More planning may be required as to when treats are given.

In some ways the earlier the diagnosis of Gilbert’s Syndrome the better the position to cope with it long term compared to someone who has lived in ignorance for years and has a lot of bad work to undo.  It may be useful to give the child as much information as they can  understand and explain that they are a bit different to peers in some ways, but its quite painlessly controlable compared to other differences (most children know someone with epilepsy/diabetes etc).

Here are some practical suggestions for older children or teenagers that I have found beneficial:-sleeping teenager

  • On school nights go to bed early but record any programmes you want to watch.  Then set aside Sunday afternoon to watch them– ensures early nights without missing out on anything and ensures a rest at the weekend.  Also, weekend omnibuses are a cracker!
  • do your homework as soon as you get in from school, maybe after a healthy snack, that way the hard stuff is done before you get too study when your energy levels are highesttired (meaning it’s done more quickly and to a better standard too) then whatever energy is left can be spent with friends or watching TV, whatever you enjoy doing, whilst ensuring there is no pressing reason not to have an early night.
  • Priorities – when I was at secondary school, even though we didn’t know about the Gilbert’s Syndrome, my parents felt my priority was my school work, as did I, and so I wasn’t expected to do anything around the house as long as I was working hard at school.  I also had my weekends and holidays to myself to relax and have fun.  Every child/teen’s priorities are different but if they are agreed, maybe concessions could be made in other areas.
  • During A levels (still undiagnosed with Gilbert’s Syndrome) I had a lot of time off 6th form, this may have been avoided had I known that, staying up late to get academic work done, whilst chugging gallons of coffee through the day and evening to try and keep me going, along with sugar hits here and there were actually making me less able to cope because I was majorly stresing my liver (and going clubbing and drinking at the weekends wasn’t helping either!).  If I had been aware of Gilbert’s Syndrome I could have done more work in free periods at school while I was still alert, had early nights, eaten healthily, gone out maybe every other weekend and avioded alcohol and sugary drinks.  This may have resulted in less time off school and better health.

I hope this article hasn’t made life with Gilbert’s Syndrome sound too difficult to deal with, everyone finds their own balance and in my own experience it’s worth the initial effort to change to a very healthy diet and think more about balancing activities and rest in order to feel more alive.

(by contributor Nicola Southworth)