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Doctors need to do more research on Gilberts syndrome

Posted , 12 users are following.

christina33903
christina33903

My 10 year old son has been diagnosed twice this year with GS. Both Paediatrician's have said it's psychological and he needs to see a dietician. Never mind that my son can hardly walk, is fatigued, suffers severe stomach pain 24/7, nausea, muscle pain, breathing difficulty and forgetfulness. He has had 3 months off of school and missed out on several Jujitsu comps.

We have done many blood and stool tests, ultrasound and an MRI. Only thing the doctors could find was, mesenteric adenitis(inflamed lymph nodes), high bilirubin, high white cell count due to either allergies or parecites and slightly fatty liver.

There needs to be more research and education on this condition. There are far too many GS sufferers who seem to be treated like it's nothing and to get over it. Something needs to be done. While nothing is being done, I am going to try everything I can to improve my son's symptoms. The first thing eliminating dairy and then fructose etc.

Thank god I got onto this forum, now I know this is a serious condition that has a huge impact on everyday life for so many people.

0 likes, 14 replies

14 Replies

  • anthonyk777
    anthonyk777 christina33903

    Posted

    Hi Christina, i rly feel for you and your son as i was once that son who needed help but my parents heard the doctor saying it is asymptomatic and that i will learn to live with it. Luckily now that i have grown up i have pursued my own doctors and i m dealing with it the best way i can. What i m gonna say to you will mostly save you years of heartacke and beeing yoyoed from doctor to doctor. Have a genetic test to see if your son holds that specific GS gene or any other disorder. Then deal with any allergies as they will tend to bring his immune system down and cause his bilirubin to spike. Promote a healthy varied diet but first again have food allergies test as i have went for 27 years unknowingly beeing allergic to wheat, eggs, and almonds. Very important is for your son to talk to someone and seek psychological help to help him to deal with all this.
  • chaderella
    chaderella christina33903

    Posted

    Hi sorry to hear how ill your son is feeling. I have GS and have found eating gluten free has taken away the bloating and stomach pain. I have also noticed the brain fog has improved with being gluten free. Also drinking lots of water through the day helps. There are a few Facebook groups offering support you might want to check out. Hope this helps. I can't do as many things as I'd like because of fatigue. There does need to be more research. Hope he begins to feel better soon.

  • Kwenda
    Kwenda christina33903

    Posted

    We all on this forum would agree that more research is urgently needed...

    Also what helps for some does not work for all, so you have to sadly be patient and try loads of diet and life style choices since there is so little research.

    Note here that any changes have to be scientifically done, such as make only one small change and try this for a whole month. Then if no change try another possible solution for another month.  If you make too many quick changes you would never know which was the correct solution.

    Speaking only for myself, and interestingly this is supported by evidence in the scientific litereature, I have found that a NO spices and NO herb diet works for me.  I lowered my bilirubin level from way over 100 down to the 30's by a very careful control of my diet.  Quite literally no peppers, no spices and no herbs of any kind. Even simple hamburgers purchased in a supermarket have added spices, so read all food labels...  

    Don't forget that herbs and spices are eliminated from the body by the liver, so the less stress on the liver the better.

    • anthonyk777
      anthonyk777 Kwenda

      Posted

      What reallyly gets to me is when some of your guys report beeing forgetfull because there is really an issue there as well. I am only 28 years old and have always had real trouble remembering events in my life but also minor things. Not sure if this is the a symptom to do with the brain fog. By the way u have mentioned in this forum before that i m taking a course of phenobarbital now on 2 weeks and my eyes and skin have never been more white..so much it brings me joy to look at my eyes. Though for now everything else remains the same more. A few food intolerances and constant brain fog!
  • Coast2Coast
    Coast2Coast christina33903

    Posted

    Hi Christina,

    Im sorry you are having to deal with this. Im 45 and have been dealing with this most of my life, even though only aware it was GS for the last 6 years. I too suffer from CFS and a list of other symptoms and have found a few practical things that might be of help.. The things so far of help- Lots of sleep, a low carb diet, low stress if u can, and most of all....Lots and Lots of warm sunshine!!!! If its cold, sleep with a knitted cap and plenty of blankets. I feel so much better when summer is here.. hope this helps!!

  • Coast2Coast
    Coast2Coast christina33903

    Posted

    ..also for the stomache pain, stay away from anything sweet. No sugar, no caffiene, no artificial sweeteners... all of them cause incredibly bad abdominal pain!!
  • TheMrs.
    TheMrs. christina33903

    Posted

    Hi Christina,

    I feel your pain!!!  My son is 9 now but we got him diagnosed right before he was 4.  Observant analytical parents and a doctor willing to listen.  I had to emphasize it is NOT normal for my 3 yr old to be crawling across the kitchen floor saying he was hungry and wanted to eat but he was scared to eat.  We had also documented random fevers, malaise, and sleepy episodes and they seemed to come at more regular intervals (ie looking back probably growth hormone related).     

    We are very strict on his diet and just so happen to be homeschooling.  If we weren't he would have missed a LOT of school or be failing.  When he's in a fog he can barely pull a 60-70 on most things (math is worse) after a couple of weeks he's back to 90-100s and missing a few spelling words.

    His diet so far is LOTS of cooked veggies with no salt of seasoning, 1% milk, low fat, no sugar, low protein (higher lean protein) and then he can eat carbs.  He usually doesn't like to eat that many though after he eats all required veggies and drinks lots of water.  Its not foolproof and we let him cheat every once in awhile but it has helped.  The only thing we can't find a work-around for is when massive doses of growth hormones seem to hit.  We are about to dig into research again and see what other supplements we can add or what we need to be more careful of.

    Best wishes for you and your son!

  • gary68104
    gary68104 christina33903

    Posted

    Hi Christina: Just to add my piece .Iam now 61 years old and had known of my GS since I was 19 years old .In my day of growing up with no information out there and no internet in the day.As time went on I learned that I could not drink alcohol like the other guys and certain dairy products as well gluten.So for me over the years I learned to cut back on these products and became more active exercise eat healthier and drink lots of water also I  did a lot of running and got a good 8 hour sleep. My son had inherited GS from me as well.He followed my pattern and also ran , he now runs Marithons as well as the Boston Marathon , he is now 27 years old and is a Fire Fighter which is a very physical job.we seem to be able to do well with this disorder , but if we indulge away from our pattern we do suffer a set back.

     

    • leon18415
      leon18415 gary68104

      Posted

      I am wondering what type of foods/ diet/ anything that help. I was diagnosed last month. I know it seems to be trial and error. But Is there any one good line of living, supplaments or foods to help right away. Again healthy. But I am a person who grows 8 different hot pepper plants a year in my garden. Does spices and other things effect you in a way you won't touch them. I'm eager for information on this and am looking everywhere for it. Anything more you can give would be greatly appreciated!!

    • Kwenda
      Kwenda leon18415

      Posted

      If you read up this thread you would read that spices are eliminated from the body by the actions of the liver. It is a known scientific fact that a spicy diet can cause a high bilirubin level and thus Gilberts Syndrome.  

      I have eliminated all spices and herbs from my diet and the bilirubin level has come down from over 100 to 22 or almost normal. If I eat spices it goes up and this is supported by the scientific literature.  Obviously not everybody is affected like this but a month trial diet is worth a try...

      Sadly there is no magic pill or quick diet change that works and I can only suggest a slow change in diet to see what works for you. Allow at least a month for any change as it can take time for the bilirubin level to come back down.

      Try a no spices or herbs diet first, it works for me and there is scientific support for this.

  • evelyn_68466
    evelyn_68466 christina33903

    Posted

    I would have them check your son out for Wilson's also. I had two docs tell me my

    son has Gilberts syndrome. After we left gastro doc with recheck in 6 months we got a call because they got blood work back that they hadn't seen that's pointing towards Wilsons not Gilbert's. He's now doing a 24 urine for copper. He has the same symptoms your son has. The test they got back was a low Ceruloplas and low globulin.

    Mothers intuition, my son seemed awfully sick for someone with just Gilbert's, stick to your mothers intuition.

    Good luck!!

  • susan7171
    susan7171 christina33903

    Posted

    Hi Christina I agree more testing needs to be done on gs Drs just fob is off my condition sounds exactly like yr sons can not breath tired yellow eyes bilirubin 44 they say we can lead a normal life all I want is a normal life what is the cause of this gs I was told a missing gene is this true please drssss more testing we needs some medication to control this 
  • dan78451
    dan78451 christina33903

    Posted

    Hi, has he gotten checked for Lyme disease? What you are describing could be potentially lyme...... If doctors cannot figure it out, try some homeopathic doctor (who is a real doctor practicing homeopathic remedies), your son is still little; his system is only 10 yeasrs old; at this age homeopathy can do wonders.  
  • jeff123123
    jeff123123 christina33903

    Posted

    hey everyone new to this forum

    ?sorry to hear your son suffering from Gilbert Syndrome i also suffer from the condition only found out about 2 year ago always knew i had something wrong with the colour of my skin and eyes and constant stomach pain fatigued forgetting stuff nausea muscle pain struggling to breath always catching every bug that was going around even when i didn't have a bug people always fought something was seriously wrong because the colour of the skin but was good to find out i had something that was wrong.

    ?But i feel as if there is not enough research into Gilbert Syndrome no matter how many times you go to doctors you get nothing but eat healthy etc or a leaflet as i was giving the only tests i have had have been blood test i would like to go for an ultrasound and MRI but just feel as if your getting pushed away and told to get on with life and eat etc what makes you good but doesn't help especially when am the one with the condition.

    ?anyone feel free to respond with any comments and helpful info

    thanks.

     

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