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Confused - blood test results

Posted , 4 users are following.

lorraine21138
lorraine21138

Hello all.  I'm diagnosed coeliac by blood test and endoscopy and my children have now all been tested.  One of them has had a positive result on the blood test and is awaiting endoscopy. When I had my blood test I was told anything below 5 was normal - however, my daughter has been told that anything below 20 is normal.  She has also had a massively high result (just under 5,000) when 'massively high' regarding the test I had seems to be around 300 or so.  Is this a different test to the one I had?  All the GP said to her was that it was her TTG.  I'm also concerned that her GP isn't checking her FBC or anything else in case she is anaemic/vitamin deficient.  Apparently he was a bit blase about coeliac, even saying when she asked about eating gluten that 'well, you've eaten it all your life and you're bound to have cross contamination so don't worry too much'  Lots of parental guilt going on here - I'm so worried for her and her health.

0 likes, 4 replies

4 Replies

  • lorraine21138
    lorraine21138

    Posted

    Just to clarify - her GP isn't blase about her not following a gluten free diet, he did say that was necessary however, he suggested that it wasn't a big deal if she wasn't 100% strict about it.

  • jace81824
    jace81824 lorraine21138

    Posted

    Hi Lorraine,

    My GP told me it was pointless to do blood work as that is not a very accurate process. She said the scope is as close to accurate as they can get however I would have had to ingest gluten for 6 weeks prior to and vomiting everyday for 6 weeks was not something I could do so I simply live gluten free which means I live pain free and vomit free and I am more than happy to do that.

    Being a little gassy or having constipated was not fun but it really didn't bother me until the symptoms escalated to my gut being in a complete spasm for 4 to 6 hours until I could vomit certainly got my attention.

    Good luck with everything.

  • anthony10484
    anthony10484 lorraine21138

    Posted

    I never had a blood test to look for coeliac disease, it was found during an endoscopy session for other reasons.  Having been gluten free now for four years, I find that even a small amount of gluten causes me significant problems.  Before the diagnosis I had no symptoms that would have lead me to think that I had CD, although I had been prescribed medication for anaemia, which I no longer need.  It seems that having been gluten free for a few years my sensitivity to it is now very high.  The message appears to be that once you have started the gluten free route it is necessary to be strict about it.  You might find it helpful to join Coeliac UK, this organisation has lots of advice on the subject as well as a database of suitable products
  • jasmine19000
    jasmine19000 lorraine21138

    Posted

    Hi Lorraine,

    I'm currently seeing a gastrointestinal specialist who is also a professor in the field. I've seen two GPs, and both had a very dismissive attitude (you can read more in some of my own threads). I also have two children, so I understand you wanting the best for your kids. 

    Firstly - don't feel guilt for this disease, or not having done anything for your children sooner (or however it is you're feeling you've gone wrong). I am awaiting an endoscopy, and can't wait for multiple reasons - I suffer from about 99% of coeliac symptoms, and some of them are unbearable at times. The other reason is because if I have a diagnosis, I can take the kids in for endoscopies as well and they will hopefully not go through any of the rigmarole I've been through just to be tested (current GP downright refused to allow me to have an endoscopy - I demanded she send me to a specialist (of whom someone had recommended I see) and she didn't like that much - but what choice does she have?!).

    I've come to the conclusion that GPs, although we should be able to rely on their profession, are not all capable of knowing as much about everything as specialists. 

    If you've been diagnosed coeliac, who do you see? Do you have someone who supports you, like a specialist, or someone who is more specifically in that area? 

    I would recommend leaving the Gp for now, take all of their results and find someone who knows what they're talking about. Or, at least ask the gp for a referral to a gastrointestinal specialist. 

    If you must see a GP and would rather seek a second opinion - find one that someone recommends, and walk in there with guns blazing - explain that you don't feel the last one took it seriously, and tell them what you want. They will know immediately you're not going to settle for "oh you'll be alright if you occasionally eat gluten". 

    They don't know everything unfortunately - so really... go with your intuitive gut! 

    And be easy on yourself - you clearly care for your kids or you wouldn't be on here worrying about them. Youll get to the bottom of it all and help them to heal themselves.

    Best wishes Lorraine!

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