I am now 66, but from being about 9 I often had sickly feelings, and jaundice. It was not until 2010 when the GP realised there was consistant high bilirubin in the blood It was diagnosed as Gilberts syndrome. They say it does not affect you, but it does in all the ways described by many on this blog. some days can be pretty bad.
Now I realise why I often felt so off and constant tiredness in my youth but did manage a career in nursing for many years. as you get older it can be debilitating.
Hi Brendan and All,
Please click on my username to read my other posts if you are interested in diet info per my experience. Yes, I have exhaustion and foginess on certain days and this correlates with my food intake the day prior. I rarely allow myself alcohol. And never have more than a single drink, with food.
There are times that I do have to allow myself a bit of sugar, preferably natural source sugar, if I'm really uncomfortable.
A lot of this is a trial and error process and I suspect no two people with GS or otherwise are exactly the same in terms of sensitivities and reactions. Still, there likely is some common ground and I hope my food/ diet info is of help.
Meant to mention that I don't have many GI symptoms, which I see many other people report.
I've read that the Paleo diet can help! My previous post has gone to the 'moderator' and had a link. I'm going to try it!
I just had a look at the Paleo diet which is nothing new. but so much info written about it I guess it may be just one of those fads. I noticed a post where everyone was so happy with it and losing weight like no tomorrow. this makes me suspect. I think you should eat what you find is OK I find certain foods I cannot eat so avoid but I do think avoiding processed food is the best idea.
Hi Oldtyke,
Are there some foods in particular that you have found to work well for you? Anything in particular that you have found you struggle with, other than processed foods, generally?
I eat lots of vegetables rarely eat meat, or bread unfortunately I like cake but try to ration it out fruit is good. I quite often have a mild curry, without any symptoms of sickness (many of the curry spices are actually good for you) I think one thing never to do is starve oneself, that is bad. eat what suits in moderation, and anything that dosen't leave out Also alcohol is definately out though I do occasionally have a brandy in hot milk I find that can be settling. Hope this helps all the best
Having been diagnosed with this a few weeks ago, everything made sense from years of suffering the symptoms that have been detailed on this page. I seem to be experiencing a bad episode after I went out Saturday night and had a quite a bit to drink. Since then I feel like I've been in a constant hangover, fatigue, slight dizzyness, sore stomach at points. I do panic sometimes thinking it is other things, but I had tests done for just about everything a few weeks ago and when the doc called she said it was this, nothing to worry about, but wants to do another test for same thing.
They will need to do a few more blood tests to see if your bilirubin levels are consistantly high, my diagnosis was only noticed because my doctor by accident must have looked at previous blood tests and saw them high.
Please never drink it really will harm you. as for your Doc saying nothing to worry over, it really isn't, but do stay to a diet that you know you will be able to eat without problems you will find out by trial and error. The worst part if having a flare up is the fatigue etc. The complaint in itself is not a dangerous one just bloody inconvenient.
take care of yourself. all the best .
Hi Oldtyke,
Thanks for the follow-up message. Not sure if there may be differences among people with GS as far as what triggers uncomfortable reactions...If interested in my food lists, or if others are, if you click on my name I've indicated that info in other posts...
Basically, I seem to have no problem with meat -- especially if I eat meat together with bread carbs, (also not a problem, generally). Best is a turkey burger on bread, no condiments.
Vegetables are a positive for me and some fruits such as watermelon. But certain other fruits -- particularly fruits that are heavy in acid seem to trigger the weakness and other symptoms for a day or longer following consumption, unless the quantity is small. In particular, I'll mention strawberries, oranges and other citrus, apples, pineapples and tomatoes.
Interestingly, some of these fruits, if cooked, seem to be less a problem -- tomato sauce is okay for me in small quantities -- better than raw tomato, apples if cooked are ok... Not sure about the other problematic fruits cited here in cooked form.
Your point re moderate portion size definitely applies to me. Relatedly, drinking water while eating seems to help. Not sure if it's due to dilutiuon or eating less due to less hunger as a result of drinking water while eating, or perhaps both circumstances.
I do have to watch my consumption of alcohol and only occassionally will allow myself a mixed drink, (perhaps 1x per month), with plenty of food, usually a margherita. Decent quality tequilla for me seems slightly less problematic than other alcohol.
Hope this info and other info I've posted elsewhere on the GS forums here is of help to you and others.
Hi Shaun,
Yes, be careful with alcohol. See my notes re diet here and elsewhere on the site if interested. There may be some overlap, though I'm not sure every individual with GS has the very same sensitivities -- but there probably is overlap... The process has been trial and error for me as well, as Oldtyke says...a rather lengthy process though, so sharing diet info with others may be valuable to speeding up the process.
Other than alcohol, have you noticed other foods that are triggers for certain symptoms?
Best Wishes
Hey,
I'm 27, i found out I had gilberts syndrome at the age of 20.
My doctor told me I was born with it!
So for 20 years I had this and had no idea ha!
I explained an awful, with regards to my behaviour etc.
I always find a healthy diet helps with feeling lathargic and tired etc. Not drinking a lot helps with the liver symptoms you might face (as i do) and that also helps with the anxiety and anemia.
Make sure you have a healthy balance of meat, fish and protein in your diet, I always make sure I have a mixture of red meat, poultry, protein and pasta during the week. I know how easy it can be to forget whislt working during the week.
Also, Cod liver oil capsules - magic and Zinc tablets.
Going to sleep at a decent time and generally taking good care of yourself. I always thought I was just a bit dopey, but it gave me a little comfort in knowing that there was a valid reason behind it!
Hope that helps a little!
Leannemq1
Hi I also was diagnosed with Gilbert's Sydnrome a few months ago. I am 18 they usually diagnose this condition when u r in your late teens and early twenties for some reason. I also don't fully understand. You must remember that this is a harmless condition but it can cause your skin to become a bit yellow sometimes. I also have anemia and it's good to hear that u r taking some supplements that are helping. It sounds like u r quite anxious about it. Have u talked to the doctor about how bad your anixety is?
It may be classed as a harmless condition but constant problems can be debilitating. I must have had this condition from being a Young man but it was never diagnosed until in my 60s best thing is to keep a check on weight also but dieting can be bad so don't do a strict diet regime. I know younger folks like to think of their bobies beautiful etc. eat a good general diet, I am vegetarean but will occasionally eat fish. I find too many carbs not so good.
I am an internal medicine physician as well as an Epidemiologist who also happens to have Gilberts. Additionally, I am good friends with a liver specialist (Hepatologist) who also has Gilberts who agrees with my opinions on Gilberts. Furthermore, I know many people with Gilberts and know their medical histories and symptoms - since the condition is genetic (autosomal dominant), most of my maternal relatives all have the condition.
I have also had many different types of diets at different times throughout life for health reasons unrelated to Gilberts - vegetarian, vegan, macrobiotic, gluten-free, lactose free, etc.
Gilberts is asymptomatic - i.e. Not at all likely the cause of your multiple symptoms listed here. Actually, epidemiological studies suggest that Gilberts is protective - people with Gilberts have lower rates of cancer and heart disease, which are the most common causes of death in the world.
When working/speaking with your doctors, you should not attribute any of your symptoms to your Gilberts; having Gilberts is not the explanation for anything other than why your blood test shows an elevated bilirubin level... And nothing else.
Since over 113 gene variations are involved in Gilbert's Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/18518849
there is bound to be some variety in the experiences of individuals who have it. Some don't suffer from it at all. Some suffer a great deal. More research is needed.
Agreed. Doctors think GS is a non-issue. As far as eating habits, the cleaner you eat the better you will feel. FIrst, drink a liter (or two) of water first thing every morning. Before coffee , food or anything. I also edited my way to a vegetarian dairy free/gluten free diet with plenty of healthy fats (avacado's coconut oil, almonds, cahews). Eat 5 small meals a day & get regular exercise. I literally went to the ER in my college days (pre diagnosis) for stomach issues, it was so bad. I left with the doctor telling me, "i ate to many vegetables." wth?
It sounds like GS to me. Alchohol is not our freind.. I finally figured it out and drink only on special occasions, one-two drinks max. The "nothing to worry about" means, it's a disorder, not a disease. What they don't know is how it does affect your daily living and that causes worry which leads to increase of signs and symptoms.
Julie96007 I'm a raw vegan :D that's what works for me!
personally I can't drink a single drop of alcohol without feeling sick!