Gilbert's Syndrome symptoms have ruined my life.

Hi Jade,

 

Your story sounds exactly the same as my son.  He had what we thought was food poisoning however never recovered.  He has been jaundice ever since and consistantly has high levels of Bilirubin (around 90).  We have since found out that he has a gene mutation UGT1A1*28.  Now it has been suggested that we look at testing for MTHFR Gene (look this up as this gene can cause many issues).  A friend of ours has also suffered from Gilbert's for over 20 years and has just tested positive for the MTHFR Gene so we are hoping that if they can give him treatment for this it may help ease his symptoms.  There are clinics in Australia set up purely to support people with the MTHFR Gene.  Jade your story broke my heart as I have watched my son feel the same pain you are going through.  I really really hope that research in this area may help to find something that can ease this pain. Thinking of you xx

I really feel for you.  Past responses to this forum seem to indicate that you have to be careful about what you eat.  Different things can trigger it off for different people. Someone I know can't eat tomatoe, e.g.  I wonder if a food allergy test would be helpful to find out what makes it worse for you.

Have you read the other GS discussions?  Please take care.

Jade, good luck with everything as it surely feels overwhelming for you. I too am disheartened many days and my symptoms arent as extreme as yours. I feel I am managing them mostly by eating a vegan diet (trying to even progress to mucusless diet. If you google mucusless diet you will see a crazy amount of info) I feel I am at my peak when I eat only fruits and vegetables.

I have a book on Gilberts by Michael Harper that I bought on Amazon. I'm not too sure if I recommend this book, as its basically a pamphlet that contains much of what I see online but it does have a compilation of recipes and it's sometimes more validating on the condition if there's a physical book on hand (possibly to give your loved ones who dont understand or believe your pain)

In the book it mentions that there ARE medications to lower bilirubin although it doesnt go into which ones. (like I said, the book is lacking) but a google search provided me with this medications name Phenobarbital

COMMON BRAND NAME(S): Luminal

GENERIC NAME(S): PHENOBARBITAL

Now, being I have no medical background there might be more drugs that accompish this and I would love to know myself if anyone else is aware of which ones are geared for more the Gilberts so please chime in if you know.

Until you can find a doctor who might prescribe you something you might want to even try even avoiding your toast or switch to a gluten free bread (I know, I feel like banging my head even advising this because many gluten free breads taste horrid) I'm just saying it because sometimes I feel that when I eat gluten free it helps as well and eating a lot of bread leave me feeling badly. LIke I said before, the boring life of veggies and fruits makes me feel almost NORMAL.

Normal life cravings still present me with pizza, etc and I do fall prey every now and then to those but I also pay the price with how bad I feel the following day, two. Recently, I ate greasy pizza and felt nautious the day after like I was dizzy/ car sick (very odd feeling) I rarely eat like that so I know that the grease on that pizza really had some wild side effects on my condition. I also struggle with fatigue so I CRAVE caffeine to keep me going but its such a double edged sword as the caffeine makes me also feel strange and bad... a little more awake but also strange and bad  

Hope you find some resolution. Please keep us updated so your path might help us as well.

Hi Jade,

some people have responded with some excellent suggestions for you. I also have gilbert's syndrome and have struggled with fatigue etc since i was 18. I am in my late 40's. I have been diagnosed with all sorts of things such as depression, fatty liver, chronic fatigue syndrome etc etc and tried so many things, but in the end i am still fatigued and have cut back on many things in my life to a sort of manageable level. i tell you this because chronic illness of any sort has lasting effects on your happiness, as i am sure you know, so my recommendation to you would be to also seek some professional help in learning to deal with a different kind of life to what you expected. that is not to say you won't get better or improve, because there is always hope, but in the meantime, if you are all alone, someone to talk to could be monumental for you at the moment. You are dealing with a lot of things simultaneously, sickness, loneliness, hopelessness, anger, frustration, misery, abandonement, and it's time to get someone to listen to you and give you some support while you sort out what triggers your symptoms and how you might improve them somewhat. Good luck and i will be thinking of you and wishing you all the best. XOXO

I've recently been diagnosed with Gilbert's (3 weeks ago). Before I thought I had a bad case of allergies as I'm gluten, lactose and sugar intolerant. After having more blood tests done my gp told me that I had Gilbert's and not to worry. Which I laughed at due to the fact that in the last 2 years I've probably missed 5 months of work due to being sick or just too tired to get out of bed. My gp said "the main thing to worry about is the jaundice and that all the other symptoms are minor and won't affect your day to day life". For as long as I remember I've struggled with sleep, eating and concentrating for more that 10 minutes.

However, since I cut out caffeine, gluten, sugars and anything processed and replaced it with fruit, vegetables,and fish. I've affectingly started the paleo diet but with my added allergy requirements on top. I started making my own vegetable loaded soups and salads. It's been a couple of weeks since I started my new regime and its still a massive learning curve. But I had a full week of feeling ok last week. The first one in months and months. I have also decided to go completely dry. No more alcohol. I drank 1 pint on Saturday and crashed Sunday and today. My advise is eat proper healthy, exercise at least twice a week for half an hour, rest as much as possible during the day. Just sit down for 10 mins and do absolutely nothing. And make sure you drink loads of water. Helps flush all the rubbish out of our crappy livers. I've been told that eating little and often helps with the brain fog and fatigue. And from what I've read as long as you are reasonably strict with the stuff you eat and drink it tends to be ok. Hope this helps. Good luck and if you find something that works for you please share. The more info we have the better we'll be able to cope with this.

Hi Jade, I also suffer from Gilbert's Syndrome. I have recently come up with a very simple solution to get along with it and I hope it works for you too. Drink a glass of pomegrante juice (it must be natural) or have a pomegrante and all the symptoms of Gilbert's syndrome will disappear.

HI Jade,

I am sorry to hear you have experienced these symptoms which have led to your life changing for the worse. I am also experiencing something similar. I am miserable. I feel like no one can help. I have spent all of my savings trying to eat organic. I have experimented with supplements and diet changes. I have had allergy testing nd blood tests. I am lucky to have access to Naturopaths at my college as I am studying nutritional medicine but I have not had any luck yet.. I get migraines, vomiting, my head pounds/throbs even when I don't have a headache, my eyes are sore and throbb, I lose focus easily and often feel like I am constantly drunk or hungover, my liver sometimes swells up and hurts, I have brown/yellowing under my eays, my eyes ae constantly puffy, I don't recognise myself in the mirror, I am too sick to ever catch up with friends and feel very isolated. Unfortunately I am not very close with my family, athough they do help out with my daughter so I can study or go in to college. I am a fulltime single parent, I work 2 days a week and am studying fulltime as well. I feel like I am going to have to spend the next 6 years of my life researching tis god dam disease so I can finally feel well enough to enjoy my life. I do not understand why the doctors don't want to help us. I am very irritable all the time and have sometimes found myself snappnig at my4 yr old daughter when she is playing up. I feel like this is not me and not who I want to be but I am so tired I just want to spend all day in bed and forget about any responsibilty. I have tried getting extra sleep in hope that it will help but I wake up each day feeling the same. I am constantly craving sweet treats and coffee to give me a hit of energy so I can pretend I am not sick for an hour or 2. I asked the Naturopath if there is an enzyme that I could take that could fix it but they said that there are too many enzymes and they don't know which particular one my body is not producing enough of. I am currently taking NAC and I did think it might be working for a while there but am feeling as worse as ever today. My fingers are crossed that this will go away as I fear I may loe my job and all of my friends. If I cannot make it to college next year I will feel as if my life has no direction and I am concerned I wil spiral into a depression.  I really hope you have found something that works for you. I will definatly post on here in the future to let everyone know if the NAC has worked. So far I have been taking it I think for about 5 weeks. I could keep writing forever but will leave it at that for now. Good luck everyone!  

Hi Jade! I am 71, had the Gilbert with its associate problems all my life.

I finally got a correct diagnostic when I was 55 and they told me there was nothing I could really do about it. In those days there was a Gilbert site in England where they put together a database of the "cures" that each patient tried and aparently worked. Many people took an aminoacid, Taurine with good results; I looked at the dosages and with the help of a local doctor we decided to put me on a 500mg three time a day dosage.

My life changed so dramatically, beyond any words explanation.

Now, to find the proper dosage you need a doctor, the dose that woks for me is propbably not for everybody since I am 6.6" tall and weight 300 pounds. I also take 50mg of zinc, but it came later due to my doctor.

I wish you all the best! I have been there for a long time and I now what you are going thru. In my case Taurine performed the miracle, even in a lower dosage I would split it in 3. Keep going, be your own luck!

 

Jade, I feel the exact same way as you do. About 8 months ago, I was woke out of my sleep with what I can only describe as the worst pain I have ever felt in my life. I didn’t know what happened and put it down to the activities I had done the day before. I ran a marathon then not too long after. Then around August time I started to notice that I was getting cramps and different feelings quite frequently and I was spending a lot of time on the toilet. I visited the doctor three times in two months with an extra three blood tests, and after the third time I was told that I had GS and that it was harmless. I was told to keep a food diary until I was referred for a camera test. Fast forward a few weeks and I was back again, no sign of the referral, so we rang up, and the waiting list is 91 weeks. So with the way things stand now, I basically have to survive until August 2019 before I can be seen. A bit disheartening as I can’t do anything, I’m lucky if I can attend college for a full week. My story might be slightly different from yours as the doctor belives that I may Ben suffering from something else also, but what I wanted to ask was, does anybody notice any problems when they drink alcohol? Not like pains or anything but I had a drink on New Year’s Eve and I felt good, and then I took one more sip and all of a sudden I could just about stand up. It was weird as it had never happened before, and I really suffered the day after. Another question I have, does anybody have any problems when they don’t get enough sleep? 

I'm sorry t hear about your pain! It's no fun for sure, but there is hope! Learn what the triggers are and I would say most importantly, stay hydrated.. that seems to really be an overarching helpful remedy for GS. I don't really believe in Rx meds beause the liver has to work hard to handle those meds. I am a proponent of going the 'natural route'. But it takes time for sure. 

I just stumbled upon this very helpful website that may help you. The author is a nutritionist and functional medical practitioner. Although many doctors say Gilbert's is benign, it is not. Your liver is not working at proper capacity, and it can result in a wide array of symptoms depending on the person. There are things you can do to help. I encourage you to read this article and research this further.

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Hi Jade,

I'm so sorry for what you're going through. I've spent the last five or so years trying to figure out my own health issues. Only until the last year or so have I figured out that I am dealing with the effects of Gilbert's Syndrome. I was first diagnosed when I was 28 (I'm 45 now), but didn't have any symptoms aside from depression that I could detect. Hindsight, I may very well have had symptoms, but the doc who diagnosed me said that it was a benign condition that would only make me jaundiced and cause yellowing of my eyes. Interestingly, those two things rarely affect me. My biggest issue is pain -- mostly in my back, which can be extreme. It was about four year ago that I worked with a team of Naturopaths who immediately instructed me to take all known inflammatories out of my diet. What I eliminated were wheat/gluten, dairy, processed sugar, and coffee. I stayed with the diet for as long as it was going to take, and literally on the 30th day of the diet (!!!) I woke up with about 95% of all my body pain GONE. There were pains that had disappeared that I didn't even know I was living with because the back pain was so severe and had all of my attention. I just have to remain steadfast in my diet and I will be ok, but sometimes I slip and then end up in a cycle of pain. At that point I just have to start the elimination diet all over and set my system back "zero."

There are several groups on FB that are GS focused, and I recommend joining them if you can. There is a lot of really good information in there if you use the search function. There are many of us who suffer from this who have found ways of dealing with it and living much better lives. I'm getting a lot of ideas for my own issues from reading others' stories. I'm currently in a cycle of pain again because I was recently very sick with a parasite and was told by the docs to drink Gatorade type drinks. The drinks helped with keeping me hydrated, but once the sickness was over, I was in immense pain again because of all the sugar from those drinks, so now I'm having to eat very strictly so I don't end up with any hidden processed sugars or gluten in my diet.

Long story short, when you research GS by specifically seeing what other sufferers have done to mitigate their issues, you'll find over and over again that diet can be, if not is entirely central to both your misery and your health.

I hope my story can help you. The pain of living like this can make you want to do anything to get rid of it, so I hope you can find what will help to make you thrive again.

Matt