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  1. #1
    Zombie_eyes's Avatar
    Zombie_eyes is offline Formerly Diamondeyes
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    Default Coeliac disease

    So after having severe anaemia and having a transfusion in june my levels are extremely low again which indicates either internal bleeding or coeliac disease.

    Ive seen a gastrenologist (sp?) today and im having a whopper of a transfusion next week (double the amount of last time) and monthly blood tests to show how much decline is happening in what amount of time. Before we do scopes and other invasive tests

    Also being tested for coeliacs.

    So im wondering if theres anyone on the hub with this. And how it affects your life?


    Mumma to two beautiful boys on the spectrum and one special little girl.
    Last edited by Zombie_eyes; 06-11-2013 at 17:28.

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    No advice just plenty of hugs and best wishes.

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    Zombie_eyes's Avatar
    Zombie_eyes is offline Formerly Diamondeyes
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    Thanks dunks. I'll be ok


    Mumma to two beautiful boys on the spectrum and one special little girl.

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    My mum was diagnosed probably about 10 years ago or maybe a few more. She couldn't believe how much better she felt immediately giving up gluten and wheat and thought most people just felt as sick as she did daily. She has pernicious anaemia and originally used to have vitamin B injections every fortnight as her levels were so low but these days she goes every 6 weeks or so. She finds life so much happier now she isn't sick or suffering from abdominal cramps all day. Food is certainly better then it used to be and we all just got used to eating gluten free pasta or cakes as it was easier to change the whole families diet.

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    Maybe try going a week or 2 gluten free and just see if it makes any difference in how you feel. Hope you get answers soon.

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    I have coeliac disease. I also have had lots of trouble with anaemia (never had a transfusion though, you poor thing!)

    First of all, do NOT stop eating gluten until you are finished all possible testing!!!!! So many people do this, and then their testing isn't accurate. When you are finished all the tests, if they still aren't conclusive, then is a good time to give gluten free a trial.

    As for how it affects my life? Well, being diagnosed has been a positive experience for me as I am feeling a lot better now than two years ago. It does take time to heal, so don't be disheartened if you don't feel better immediately, you will in time.

    Social things can be a bit tricky to navigate sometimes, but it gets easier. I'm lucky that I have wonderfully supportive friends and family who all do their best to accommodate my diet (even though I don't expect them to).

    No idea if that helps! All the best sweetie, I hope you feel better really soon, whatever the tests show xx

  7. The Following 2 Users Say Thank You to OurLittleBlessing For This Useful Post:

    beebs  (06-11-2013),SugarSkull  (07-11-2013)

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    Witwicky's Avatar
    Witwicky is offline A closed mouth gathers no foot.
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    My father has Coeliac Disease and my DS2 gets tested for it annually (it's 'linked' in a way to his condition), so I know a fair bit about it, but obviously not as much as someone with it.

    In this day and age it's easier to access gluten free products (there are even whole shops dedicated to it and a lot of cafes and restaurants cater for it now), and there are a lot of tastier options than in the past. Social media also means that there are a lot of support groups out there My DP eats gluten free for another issue which he is undergoing tests for, so we eat gluten free majority of the time (except he has gluten free toast and I just...can't).

    My Dad said that the diagnosis turned his life around, because he basically lived in agony beforehand. Knowing what foods to avoid etc meant that he could function properly again. He struggles a bit with some aspects though, being a big foodie.
    Last edited by Witwicky; 06-11-2013 at 18:37.

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  10. #8
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    Zombie_eyes is offline Formerly Diamondeyes
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    Thanks guys.

    I dont get a lot if pain but i do get really badly lethargic after eating and some of the other symtpoms too but mainly its the anaemia that feels like its killing me. Not being able to be a functioning mother is devastating to me.


    Mumma to two beautiful boys on the spectrum and one special little girl.

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    Wow, I can so relate to that. That is how I felt 2 years ago. I never had very bad digestive symptoms either (at least initially). My main symptoms were, extreme tiredness (CFS), anaemia and some MS type symptoms.

    You are a wonderful mother. Illness unfortunately happens sometimes. This won't hurt your kids, they know you love and care for them.

    What sort of tests have they got organised for you ?

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    Zombie_eyes's Avatar
    Zombie_eyes is offline Formerly Diamondeyes
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    Thanks hunni.

    So far the blood test... And then they said a bowel biopsy (terrified)

    But i cant have my blood test until the end if the month after my transfusion kicks in.


    And yes not allowed to do gluten free at all yet


    Mumma to two beautiful boys on the spectrum and one special little girl.


 

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