Gilberts Syndrome No Symptoms, you having a laugh?
Posted , 37 users are following.
Hiya Guys, I was diagnosed with Gilberts Syndrome a while back and told I would have no issues with it, wrong! I always feel sick, tired, can't concentrate very well (which doesn't help in school), I get brain fog very easily. All this affects my daily life, especially in school! Doctors just dont seem to care! By the looks of things Im not the only one that feels this way. I have problems with my eating, anyone got any advice on that?
3 likes, 55 replies
shaun32635 Caketin96
Posted
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.
oldtyke shaun32635
Posted
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 .
david08801 shaun32635
Posted
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
julie96007 shaun32635
Posted
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.
Gill_Bird julie96007
Posted
personally I can't drink a single drop of alcohol without feeling sick!
julie96007 Gill_Bird
Posted
I don't doubt that.
Keagohfx shaun32635
Posted
Drinking never bothers my GS in terms of symptoms. Foods high in Iron and Vitamin C are what make me feel aweful the next day. I have been diagnosed with GS for nearly 20 years and never once had any reaction to drinking.. I actually found that I was unable to get as drunk as the people around me at the clubs because of my GS.. Maybe its just me but It's never bothered me.
leannemq1 Caketin96
Posted
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
joel_57234 leannemq1
Posted
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?
oldtyke joel_57234
Posted
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.
julie96007 joel_57234
Posted
GS is a disorder not a disease which I think is what you mean by "harmless" No, it is not fatal like disease are, it does however have a long list of side effects that can cause harm to ones physical, mental and emotional well being. Which is why it's nice to have the chat site
john47783 Caketin96
Posted
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.
Gill_Bird john47783
Posted
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.
https://ghr.nlm.nih.gov/condition/gilbert-syndrome
ccryder19 john47783
Posted
Hi, do you know if there is any sensitivity to sun associated with gilbert's?
julie96007 Caketin96
Posted
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?