help and advice please re my son's diagnosis

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My 14 year old son has been very poorly for over a year. He currently is wearing age 11 clothes that hang off him yet a year ago at 13 was a tall beefy lad in 15 year olds clothes. After being fobbed off constantly with 'its a vrus' I put my foot down and demanded test after test after test to find out what was causing the following symptoms: -

Constant nausea before after and during food, extreme weight loss, extreme fatigue, depression, lack of concentration, dizziness, inabilty to do sports at school, school work slipping, lack of interest in life, loss of his inner sparkle, constant tummy ache, rib pain, constipation, constant thirst, constantly cold etc

Finally diagnosed with Gilbert's syndrome (his late paternal grandfather had it - I am divorced from his father and have little contact with his family so no help there), told by doctor there are no symptoms, no cure, no treatment, no need to worry. They gave him antacids, offered him a counsellor in case he was beiong bullied and/or worried about anything and sent us home,

NOT GOOD ENOUGH!!

We went to the docs because he was ill, they found it because he was ill, not by accident. All the websites i habe looked at say - NO SYMPTOMS!! But occasionally mild nausea etc etc etc but maybe its brought on by the anxiety of having a disorder. My arguement - he was ILL first and the symptoms are not mild.

Please help - I cant bear the thought of my son feeling this way for the rest of his life. Are there specialists he can see - does anybody care, is this the first time this (young) doctor has come across this or will all doctors be so unhelpful about this condtion. What can I do - does awareness need to be raised. Hasnt a doctor ever had this illness so they can say - actually its life controlling - bloody awful and I dont feel very well????!!!!

Any advice, help, experiences, anything are so so welcome, my son said tonight if I have to live like this forever please dont let me live to be 80 x

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  • Posted

    Hi there! I have been diagnosed with Gilbert's syndrome. However, the doc says that I should have no symptoms. However, I have liver pain, constant fatigue and generally feel sick all the time. therefore, my doc has now referred me to a gastroenterologist as all tests have come back fine. I am now in the process of waiting for my appt with the gastroenterologist.
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  • Posted

    I have found websites with hundreds of people stating how ill they feel - I dont understand how the doctor's can say you have no symptoms. My son's original diagnosis last year at hospital was gastroenteritits and he has not been right since, maybe there is something linked. I think I need to take him back to the doctors but expect we will be brushed off again! Hope you get somewhere with your specialist x
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  • Posted

    Good morning Lexi

    I feel your frustration and your son's anxiety.

    My husband became ill at 17 and he was in hospital for 3 days. They could not diagnose him but his mother was a nurse and had contacts through that. She spoke to a consultant who was treating her other son and she went to Oxford Medical school and trawled through tomes of medical books and discovered Gilberts. D. fitted the description exactly.

    There is no treatment or cure as such as drugs are filtered through the liver and aggravate the symptoms. The teenage years are difficult because of all the hormonal changes and angst that are happening in the body. D. had to totally avoid all alcohol and he did this for 5 years in all. Stress would put him in bed for up to 3 days with nausea, jaundice and depression but each attack would pass and eventually the gaps between attacks got wider as he got older.

    We married at 19 and in 2 years he only had 3 attacks bad enough to send him to bed. By the time he was 25 he was bothered by it very little and by the time he was in his 30s it was as though it wasn't there at all.

    The only time he gets at all 'liverish' now is if he has had a few drinks too many, taken drugs like antihistamines or antibiotics or painkillers (for flu usually) or if he is overtired or stressed.

    Your son is at the age when it will be at its peak but he will 'grow out of' this acute stage, nasty though it will be for him. I doubt very much he will have it until he is 80 but he will need to manage it.

    Keep an eye on the depression, D.'s was bad before he was diagnosed, and his mother sent him to the Samaritans more than once. Adolescence can be a difficult time for a youngster without the added burden of illness. Also watch his diet as fats accumulate in the liver and can bring on the symptoms too. A healthy diet with lean meat protein is good if he will co operate. I know what teenagers are like with their fast food. :roll:

    If he wants to 'talk' to my husband then send a PM. He will be glad to send his e mail address.

    Don't be fobbed off, it is real and it is debilitating whatever the docs say.

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  • Posted

    Hi

    I too suffer Gilberts along with Essential Tremor and Dystonia, im in the UK i went to see a consultant and also was told no symptons, yet i have been sick as a dog and fatigued for many many years approx start date is 25yrs of age i am now 39yrs of age, its total life controlling and dibilitating and has never eased.

    I feel sick everyday 24hrs a day and cannot sleep or go anywhere of any distance as when its at its worst im bed bound, i took 30 pages yes 30 pages of forum related symptons that people had posted on a forum for GS sufferers to be told by the consultant , no its doesnt have symptons.

    I have had several Endoscopys and cameras down my throat and scans and even a tube with a recording device put into my stomach for 24hrs all with no joy, yes i think awareness needs to be made , but where do you start ?

    As no medical professional will listen and i am fed up going to the docs saying hey im feeling sick.

    I am starting a facebook group called Gilberts Sufferers please as many join , i obviously are not going to put my name here , but my initials are SF , so if you find the group called Gilberts Sufferers on Facebook run by someone with the initials SF then youve got me and the right group.

    We need to get the message out there \"This Is Real \" & \"The Symptons Are Real\"

    Goodluck all and i hope to see you in the group on Facebook, perhaps we can strive towards recognition.

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  • Posted

    Hi Lexi

    Sorry to hear about your son, I suffer from most of the symptoms your son has, GS can be very hard to live with at times. I started suffering from GS in December 2006, one day I was fine and the next feeling sick everyday for 2 weeks. I saw 2 doctors one of which told me to go and eat a burger so it didn't fill me with confidence. I eventually had a blood test in March 2007 where I was told I had a slightly elevated liver function. I had a retest 2 weeks later to confirm which was slightly better and it was diagnosed as GS.

    I was told there is no cure but it can be kept under control with the correct diet but I am guessing this is different for everyone. I for example can't drink alcohol, not even a sip and this seems quite common wiith GS sufferers. I also can't drink coffee and Cola? It's hard to find things that suit you as feeling sick all the time makes it hard to narrow things down, I find boiled rice and some chicken is almost a cure for me. It's the one meal I can always eat and feel ok afterwards, even when I am feeling sick.

    I tend to have cycles where I can be fine for 2 weeks and I start to slip as I feel better so I am eating junk food then in a morning I can feel it when I wake up, it gets worse gradually over a few days then I get 1-3 days of feeling sick then I am ok again.

    Try this website : www.gilbertssyndrome.org.uk

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  • Posted

    [quote:06cae43128=\"lexi\"]My 14 year old son has been very poorly for over a year. He currently is wearing age 11 clothes that hang off him yet a year ago at 13 was a tall beefy lad in 15 year olds clothes. After being fobbed off constantly with 'its a vrus' I put my foot down and demanded test after test after test to find out what was causing the following symptoms: -

    Constant nausea before after and during food, extreme weight loss, extreme fatigue, depression, lack of concentration, dizziness, inabilty to do sports at school, school work slipping, lack of interest in life, loss of his inner sparkle, constant tummy ache, rib pain, constipation, constant thirst, constantly cold etc

    Finally diagnosed with Gilbert's syndrome (his late paternal grandfather had it - I am divorced from his father and have little contact with his family so no help there), told by doctor there are no symptoms, no cure, no treatment, no need to worry. They gave him antacids, offered him a counsellor in case he was beiong bullied and/or worried about anything and sent us home,

    NOT GOOD ENOUGH!!

    We went to the docs because he was ill, they found it because he was ill, not by accident. All the websites i habe looked at say - NO SYMPTOMS!! But occasionally mild nausea etc etc etc but maybe its brought on by the anxiety of having a disorder. My arguement - he was ILL first and the symptoms are not mild.

    Please help - I cant bear the thought of my son feeling this way for the rest of his life. Are there specialists he can see - does anybody care, is this the first time this (young) doctor has come across this or will all doctors be so unhelpful about this condtion. What can I do - does awareness need to be raised. Hasnt a doctor ever had this illness so they can say - actually its life controlling - bloody awful and I dont feel very well????!!!!

    Any advice, help, experiences, anything are so so welcome, my son said tonight if I have to live like this forever please dont let me live to be 80 x[/quote:06cae43128]

    My 14 year old son has been diagnosed with GS Following blood tests for Glandular Fever!!!! We were concerned about him because he is a National standard cyclist and was not performing as expected. He had a blood test last Oct. and when I rang the surgery to get results I was told they were all normal. Six months later he was still tired, fatigued yellow eyes and not racing as he should. Another blood test. Went to see a Locum doc (just so happened to have been Spanish cycling team's doc!) and she looked at the test results from Oct. and asked if we knew anything about GS!!!! The poor kid was suffering all that time. He is now on a high protein diet and sleeps whenever he needs to. He seems much better and has just won a race against some of the top U14 and U16 riders in the country!!!

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  • Posted

    Hi there, I have been plagued with the symptoms of GS for many years and been incorrectly told that I had IBS, Chronic Fatigue or Depresssion. I would say the symptoms started in my teens and I have only now been told I have GS at age of 30.

    I would just like to say what a difference taking a supplement of the amino acid taurine has made to my life. I first discovered this effect when I realised how different I felt after drinking red bull and that I did not feel this effect after drinking any other caffeine-containing beverages. This led me to look into the ingredients in red bull and try supplementing with taurine.

    I recently stopped taking it as still had not received a diagnosis of GS and wasn't sure why it made me feel better. Within 5 months my symptoms were so bad I was back at the doctor (this time in Australia) and received my diagnosis. I was thirsty all the time, had increased hunger but was losing weight, was finding it really difficult to concentrate or remember things and barely had enough energy to get through the day let alone enjoy life. I was also getting worsening heart palpitations, breathlessness and fainting episodes.

    After 10 days back on taurine, I have put on weight, am not as thirsty and my heart palpitations have stopped. My mental state is greatly increased and I feel generally happy. It is only since receiving my diagnosis that I have researched taurine and GS together and realised that it really helps with liver detoxification. On this note, I would like to say that I have also tried taking milk thistle but do not feel this has a positive effect on me. It appears it is good for some sufferers of GS and makes others feel worse.

    Perhaps you may like to try your son on taurine. My fatigue plagued me throughout school and university and the array of GS related symptoms I was experiencing left me wondering if I was depressed or a hypochondriac. If I could help someone else not have to feel like that it would be great.

    Good luck with helping your son deal with this condition. Further research needs to be done into this disease as the effect it has on one's life is very real and often debilitating. I look forward to getting this under control and to being able to actively enjoy life rather than struggle through from day to day.

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  • Posted

    Wow Taurine would explain a lot for me! I love drinking milk and the time I spent not drinking it made me feel very sick.

    Might be the taurine in it?

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  • Posted

    It never ceases to amaze me how utterly [b:a616633d46]useless[/b:a616633d46] the medical profession is when it comes to chronic conditions.

    I have done a lot of reading about Gilbert's over the past few months, having suffered from a debilitating illness for the last 13 years. I have been diagnosed repeatedly with 'Chronic Fatigue Syndrome', which is the most useless/meaningless diagnosis ever created.

    Amongst other tests, I have had multiple liver function tests over the years, all of which show elevated bilirubin. (Results in the 30s, 40s, 50s and 60s...and the normal range is up to 20)

    It has been well-established that I have Gilbert's syndrome, and I have been told ad infinitum that it has nothing to do with the array of symptoms I struggle with, because Gilbert's is a benign condition. Strange that my symptoms are so similar to all the other Gilbert's syndrome sufferers on the web...but I guess that must be an incredible coincidence? Useless, cretinous, imbecilic doctors.

    Anyway- I would suggest to anyone that, to be taken seriously, you have to get into the peer-reviewed literature. It's too easy for doctors to write off all the internet forum/website experiences of sufferers. What they can't write off is the stuff in the medical literature saying that Gilbert's is a problem for some people. Yes, it's there, if you look for it. (I have articles from the Lancet, European Journal of Gastroenterology, Hepatology etc)

    Have a look on pubmed and google scholar. There are articles saying that Gilbert's is diagnosed by elevated bilirubin, but there are other related enzymes and genetic variables involved in the condition,which mean other substances are not being properly processed either.

    IE- Eleveated bilirubin may or may not be a problem, but the poor phase 2 liver detoxification occuring in Gilbert's means other substances can build up and cause symptoms. It also means Gilbert's sufferers don't process certain drugs (such as paracetamol) as well as other people.

    I have only just started getting into this. Again- take it from someone who has been seeing doctors for 13 years, albeit for a different 'condition'. (Although I now think my issues have been caused by Gilbert's all along)

    Before you see them, get a real case together, with medical articles etc. Summarise it, so you can go through everything in order. Bear in mind, they probably spent one class in an undergraduate degree on Gilbert's ...where they were told \"it's not important\". You have to show them otherwise, or they'll just write you off. That's the system we have to deal with.

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  • Posted

    Hi, Have just been diagnosed with Gilberts Syndrome, but would let you all know that elevated bilirubin is also associated with B12 deficiency and can have same symptoms. If you are having blood test ask for a B12 level test which should range from around 400 to 1000 as normal. Also with the blood test your MCV level should be monitored as if this is also elevated another sign of B12 def. Check out website for Pernicious Aneamia Society for more info.

    I have been experiencing the fatigue, dizzy spells, brain fog, confusion, bowel probs ect and again was told theres nothing to worry about!! right!! I am awaiting some further blood results to rule out for sure B12 def as although my B12 was not considered tooooo low at 358 apparently a further test can be done to see if at cell level B12 is being absorbed. Anyway thought the B12 thing was worth mentioning as linked to bilirubin levels......will update you when I find out results..

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  • Posted

    i'm 15 and have the same symptoms, i can especially relate to the lack of spark for life in general and fatigue. i feel dead all the time, with no will to get up and do something with my life. every now and then i go and smoke some weed, (i'm not encouraging it) which makes me feel so much happier and full of life. i'm not really sure what my point is here but i just thought i would share it
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  • Posted

    I am 22 now..even I have Gilbert syndrome.it was detected 3 yrs back.My indirect bilirubin levels are so high all the time.I am feeling constant nausea, extreme weight loss, extreme fatigue, depression, lack of concentration, dizziness, lack of interest in life, loss of sparkle in life , constant tummy ache, constipation, and i feel dead and tired all the time.I went to the docs many times...even to gastroenterologist,but nothing has helped me.i am not able to concentrate on my studies at all.And i am getting constant negative thoughts.Docs says it is life long and not curable.I think It would better be dying than to live with it. sad sad
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  • Posted

    I have gilberts syndrome and iv always been very thin and prone to headaches and lethargy sad But the hardest thing for has been the constant jaundice all research seems to suggest that "mild jaundice may appear from time to time" but i have lived for years in a constant state of heavy jaundice with bilirubin levels more than four times normal sad and have become so depressed with the severe yellowness and lethargy with no one seeming to have heard much or know anything about it.
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  • Posted

    did you ask him is their any thing he was facing like bullying at school, work place or any where else. did some one did something bad to him or some girl cheated her. This is all his mental stress and nothing else. try to consult a consultant or psycho doctor so that he would ask him what he is feeling . this will soon solve every problem.
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  • Posted

    Hi Lexi,

    I see that it has been over a year since this forum was created but i felt the need to reply. I empathise with the difficulties you are facing. I am a 37 year old male that has been diagnosed with GS, after going to doctors with all the typical symptoms that you and all others have described over many many years. I also had been told and retold by doctors that the condition was benign and that i had nothing to worry about and that my sypmtoms were unrelated to GS. I was originally diagnosed at about the age of 18 or 19. 

    So the condition has been with me for nearly 20 years and in that time i have learnt a great deal about how to manage it. This was before i had read much of the advice out there on sites such as gilbertssyndrome.org, which is an invaluable resource. I too, like one of the other guests to this forum, have researched the scientific literature extensively and realise the gap between the scientific community and the medical professionals. The education doctors receive about this is virtually nil.

    During my bouts or episodes as i call them, i initially pursued the cause through a gastroenerologist. This is the most common first step for GS sufferers. My stomach and bowels run riot during an episode and the characteristic weight loss starts. After an endoscopy and a colonoscopy, i was advised that my gastrointestinal system was fine (perfect). So, move on to an endocrinologist. Again, my endrocrine system was near to perfect after extensive hormone tests. Advised then to see an immunologist.

    The immunologist found that my immune system was slightly overactive very much of the time but nothing that he was overly concerned with. I am highly allergic to dust mites, and he believed that it was likely to be related to seasonal allergies.

    I do believe that there is a slight link between my allergies and my GS symptoms. I liken it to a bucket full of histamines. I believe that either my increased histamines or inflammation reduced my already underperforming liver to clear bilirubin, and even more importantly, as discussed by another guest on the forum, the phase 2 detoxificaton processes, which are breaking down an even more toxic product of phase 1 detoxification.

    I believe that puberty or the hormonal changes related to it is often the trigger for the commencement of GS symptoms, but diet is critical. A fatty diet, especially deep fried polyunsaturated oils make me extremely sick. To the point of vomiting and diarrhoea within a short time. Alcohol is a no go for me, phase 2 detoxification of alcohol dehydrogenase intermediates, acetaldehyde is impaired due to the impaired UGT enzyme pathway of GS sufferers, and the delayed reaction to alcohol consumption is intolerable. Coffee and very high sugar drinks are not tolerated by me either. It is a condition that kind of forces you to live a very healthy lifestyle, otherwise, GS is triggered. But it also comes in the way of social interactions with friends. More sleep is a must. I have only recently found that taurine does seem to help me. Although, i have known for a long time that milk, and a high protein diet help me. Most likely due to the Taurine. Low carbohydrates is good. Instant pasta can make me sick. Fresh pasta is very different and fine for me, It contains eggs. Fresh fruit and veges is the best. So a low carb, low fat, slightly higher protein diet with more fruit and veges. In particular citrus and green leafy veges like endive, kale and spinach. It all adds up to a healthy diet really but it is what you eliminate that counts.

    Interestingly, my GI doctor advised me to eliminate milk and my GS symptoms became worse. When i recommenced drinking milk three weeks later, which i had always loved a lot, the GS symptoms went away.

    I think the diet could be a very personal thing due to the reduced capacity of other enzymes specific to the individual, like lactase. This would apply pressure on the liver and GI tract.

    Can i ask whether you son had started to drink lots of caffeinated drinks? I know that only when i got to a similar age, that i did. To help with school study and in a social context.

    On another note, intensive exercise can trigger GS. Increased red blood cell break down causes a spike in bilirubin. Bilirubin is a breakdown product of haemoglobin, a major component in RBCs. This is likely what was causing Dorian's son, the cyclist to become sick. Perhaps, less intense, less aerobic based exercise is better.

    I feel for you and your son. I have been hospitalised on a couple of occasions, when i was a professional sportsman, and GS has plagued me for around 20 years. I am slowly learning how to handle it better. Liver care supplements may help. Increase Vitamin Bs and C, but be careful with Vit B3 (Niacin or Nicotinic acid). This causes fragile RBCs in higher concentrations and is used as a GS induction test.

    I hope that your son is far better now than he was a year ago, and that your family has learned to live with this illness better.

    I woud love to hear how it is all going.

    Reece

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    • Posted

      Hi Reece, Lexi and All, 

      Reese, I'm a male close in age to you -- early 30's and my experience closely mayches yours in several regards. 

      For everyone's possible benefit, hopefully,  I'll list some of the things dietary and otherwise that I've found to be helpful to me. 

      Whether each of the diet items will be helpful to you, you'll have to see. I tend to think that beyond GS everyone is an individual and has a different constitution and thus for a variety of reasons may not respond identically to the next person, even among people with GS. 

      Anyway, I hope the following is helpful... Please see my next post for details...

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    • Posted

      Okay... 

      Foods that I've found most beneficial

      Oatmeal - plain Irish Oatmeal made with spring water, (usually use McCanns brand....can be made in the microwave)

      With or without the oatmeal -- I eat yogurt -- generally plain, sometimes fruit flavored... (I control the amount of flavored yogurt, due to the sugar content and fat content)

      Eggs -- (personally I don't mix in milk, though I don't avoid milk and seem to benefit from some milk products...more on that in a minute...and I don't use salt. I do sometimes melt cheese on the eggs...)

      Cheese - especially regular Swiss. 

      Salmon -- Definitely feel a boost the next day from Salmon! (Try to stick, when possible to captive Salmon vs wild...Don't health pros say that Mercury is higher in wild Salmon?)

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    • Posted

      I'm having some wifi issues and thus I'm splitting up my posts in case I lose connection, so I don't have to start again from the beginning --

      Turkey -- (especially burgers made with turkey). Just watch the sodium and preservatives in sliced, packaged turkey. Even organic brands tend to have high sodium, which makes me feel awful. (not sure if that is a GS circumstance or not. I don't see many other people referencing sodium sensitivity, but I'm not sure). 

      Watermelon - This one surprised me because of the fairly high sugar content. And sometimes I do feel that I might get a bit much sugar from watermelon, but there definitely is value there for me -- (I eat the seeds also AND the less sweet fruit closer to the rind...but I do allow myself the sweeter part of the melon as well. 

      Bread -- I do allow myself some bread as long as it doesn't have much sugar and any unnatural  ingredients. Not sure if we are all alike in this regard -- I know many people with GS and other issues work to avoid carbs as much as possible and I certainly avoid certain carbs, but generally, the healthier carbs seem to make me feel better and balancing carbs, fat and protein at each meal I find to be helpful. 

      A caveaut that I should indicate is that although I do certainly have some GS symptoms and have been diagnosed with GS as a teenager, I don't have significant GI symptoms. 

      Foods I limit or avoid -

      Sodium (limit)

      Sugar (limit)

      Fatty foods (limit)

      portions (control, limit)

      Other natural sweeteners -- (avoid), including and especially Maple Syrup make me feel absolutely horrible!

      artificial sweeteners and artificial everything (avoid as much as I possibly can...one of the worst offenders that I absolutely avoid is high fructose corn syrup)

      Fast food (avoid)

      sodas and junk food (avoid all sodas, avoid almost all junk foods)

      Caffeine (substantially limit...no coffee..no cola...occassionally a small amount of chocolate, but rarely and small quantity)

      alcohol (avoid)

      Really hope that this info is of use to others and glad to answer questions if I can. 

      Oh, a couple more lifestyle things that don't regard food ---

      and one that regards drink -- 

      WATER! (I try to remember to drink plenty and not get dehydrated. Particularly spring water. I don't really drink anything else, except soda water which I sometimes add a little cranberry juice to. For parents of teens with this issue, you might try that as a substitute for soda -- just make sure not to overdo the juice proportion). 

      Exercise -- when possible in the morning -- with moderate vigor -- helps a lot -- biking at a decent clip for a few miles, for instance 

      sleep! - And going to bed at a reasonable hour is better than going to bed late, even if you are able to sleep in on a particular morning. 

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    • Posted

      Hi again, 

      I think I forgot to mention that the type of oil used in cooking seems to make an important difference at least for me. I seem to feel best with olive oil. I don't mean from a GI standpoint, as I don't have many GI symptoms. But from an energy, clarity of thought and mood standpoint olive oil is the way to go, for me. 

      Really hope some of this info re what to avoid, limit and eat regularly is of help to others. 

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