GS and Young People

Yet another newsletter from www.gilbertssyndrome.org.uk:

Young People and GS

            Action on Gilbert’s Syndrome has had several enquiries recently from parents of children or teenagers who have been diagnosed with GS.  In many cases the syptoms of GS seem to be kick-started by the onset of puberty, as if puberty isn’t enough to deal with in itself!

            It is possible that the reson for the syptoms of GS 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 GS symptoms more obvious and harder to deal with along with everything else that is happening at this time.

For children and teenagers with GS it is an unfortunate reality that they have to be emotionally mature more quickly than others.  The key to controlling GS is to be sensible, which isn’t really what being a child or a teenager is all about.  It is possible to carry on with activitites and sports but this may have to be balanced off against other things.  The best way to do this and ensure that the syptoms of GS are not suffered, is not to stress the liver in any way.  The more controlled the lifestyle the more active it is possible be (see dietary and excercise advice given by AGS).

This responsibility will fall to parents in the case of younger children and may involve having to deny treats, in the form of food/drink and activities and possibly changing all of the famly’s diet.  I can only imagine how difficult that could be but please remember that AGS is there to support anyone in this position as well as sufferers of GS.  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 GS 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:-

• on school nights go to bed early but set the video for any programmes you want to watch.  Then set aside Sunday afternoon to watch the vid – 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 tired (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 GS, 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 GS) 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 GS 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 GS 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.

The GI diet

          I was only made aware of this diet very recently when a colleague, who has been struggling to control her diabetes, popped into work and mentioned that she had started to follow it to try and help stabilised her blood sugar.  Any mention of sugar in food sparks my interest and so I looked it up.

GI stands for Glycaemic Index and refers to how quicky the sugar in food is released.  The GI diet is promoted as a way to loose weight sensibly but could also be useful to GS sufferers as well as diabetes sufferers to help understand more clearly what happens to food once we eat it and how we can control sugar hits and slower sugar release in our diets. 

The comment from my colleague that really shocked me and made me want to find out more was that carrots are actually a fairly fast releasing food.  This means that unless balanced with slow releasing food they may actually be detrimental to us!  Of course, when speaking of veg and fruit there are massive benefits that we need in terms of vitamins and minerals, so it would be wrong to cut out all fast releasing food, but a knowledge of how they are broken down and what to balance them with  could be really useful.

I checked a few websites to try to find a list of food an how quickly they released sugar, rather than looking at the diet in particular.  I intended to skim through and look at the foods I eat to see what the state of play was.  However, having found a list and realising that there were several pages on bread alone (I didn’t realise there were that many types of bread!) I  decided to look for a recipe book, of which there are a number in most bookshops, but actually found something that is better for me.  I recommend the Collins Gem ‘GI; how to succeed using a Glycaemic Index diet’ to anyone who already has a healthy balalnced diet and doesn’t particularly need recipe ideas.  This book lists the GI rating (fast, medium or slow) of most foods (there has been nothing I’ve looked for that hasn’t been in) so that you can check the meals you already make release sugar slowly and steadily.  It also has listings of condiments, sauces, gravys, ready made meals and a guide on eating out.  

Currently available for £3.99 new, or used from £1.19 on Amazon.co.uk.

Stories and Queries

from people around the world with GS.

I was diagnosed with Gilberts Syndrome in 1999 a few months after  having a baby.  I  noticed that the skin on my face was getting  yellower and if I pressed the skin on my hands and feet, where most people look pinkish I am yellowish.  I lost around 5 pints of blood during labour and my hands and feet went orange.  I had a blood transfusion and had to take iron.  For a good few months afterwards I felt very ill.  It became combined with depression and anxiety.  My eyes went yellow and a blood test showed raised bilirubin.  I had stomach pain and something like chinese burn in my guts.  I went for a colonoscopy and was worried about cancer!  That was not the problem thankfully.  I thought I was going balmy or being hypochondriac.  I find myself drawn to eating some of the foods that you mention such as walnuts and beetroot.  I had no idea why but now I do!  I feel much better but I do get woolly and tired sometimes.  I also love wine so I will have to think about that one.

Clare.

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Hi,

Thanks for your site, I just now stumbled across it and it is great.

I was diagnosed with gs around 10 years ago, i'm 26 now. I have most of the common symptoms (ibs, feel sick sometimes, slight yellow eyes sometimes, loss of appetite), but the worst recently (past year or two) have been fatigue and brain fog. I had heard that vitamin C helps with fatigue, so I got 500mg vitamin C and a multivitamin that I take a few times a week. Not sure if this has helped or not.

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My main frustration is brain fog. Do you have any tips to help with  this? Unless I get over 9 hours of sleep, which is near impossible to do and sometimes that doesn't even help, I feel like i'm in a daze and cant get out of it. I feel disconnected and like my eyes are glazed over, almost like my brain is slowly rotting away, or that my brain is not fully engaged, and can't do anything about it, which is frustrating. I just got hired a couple months ago at my first "real" job as an engineer, and feel that this brain fog and fatigue have affected my performance, I know I am capable of doing a much better job than I have been because of this fog. I hope I am not alone, because I feel like a spaced out weirdo and everyone else seems to be fully engaged in conversation and tasks and I feel constantly zoned out with a completely blank mind.

Do you feel this way, or have you heard this from any other gs people? Any specific tips for the fog/fatigue?

Hope to hear from you soon and thanks so much!

John

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Hi there,

I'm 46 years old and I was diagnosed with Gilbert's Syndrome when I was 18 or 19.  The whites of my eye's were very yellow and my doctor did the tests and gave me the diagnosis.I've been very lucky as my health has always been great and really the only symptom that bothers me is the jaundice.  I get so tired of people telling me my eyes don't look right.  On good days (no jaundice) I've been told I have beautiful eyes, but those days are few as I almost always seem to have some level of yellow to my eyes. Has anyone come across a "fix" for this aspect of the syndrome?

Thanks,  Wanda

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Having looked for an inspirational note to leave you on, I found this quote, which seems to sum up what Action on Gilbert’s Syndrome is here to help you with:

There are two ways of meeting difficulties: you alter the difficulties, or you alter yourself to meet them.

Phyllis Bottome