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  1. #11
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    my daughter was like this too... and she too was taken of gluten and lactose but it change a thing... I eventually after much persuading to my gp got a referral to a pead and was sent to the royal childrens for further testing... dd now 4 years old was diagnosed a year ago having a FRUSTOSE MALIBSORBTION. ie. her tummy cannot process certain natural sugars found in fruit and some vegies etc... so isn't allowed to have things like fruit, corn syrup, honey etc... (we have managed to re-introduce some fruits to her like banana and berries etc... but only in small amounts. she has the same reactions when she eats fruit and gets the runs and tummy pain and bloating etc and it isn't comfy at all!!! part of the fructose intolerance can also be cutting out wheat from the diet too as this can aslo cause a reaction in them... (luckily my daughter can have wheat and her case of fructose intolerance is not that high) my mother has the same thing... and for years it was mistaken for ibs and other intolerances... but since cutting out the fruit and wheat mum is fine and so is my daughter!!!! it was well worth the push to get tested! and it isn't invasive at all either! asl your gp about it too and if you are getting tested for gluten do the fructose at the same time... good luck!!!

  2. #12
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    Quote Originally Posted by MissMuppet View Post
    What does the test involve? Is it the skin prick test or more invasive?
    Skin prick for us.

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    MissMuppet  (10-08-2012)

  4. #13
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    Miss Muppet - skin prick testing is to test for an allergic response. If it's an autoimmune response, there are 3 parts to the testing, blood test (for elevated antibodies), Gastroscopy (for biopsies to check for damage to the intestinal villi), and a DNA test (mouth swab). Not all are necessary to make a diagnosis.

    Not all doctors do the DNA test...

    Your doc will most likely start with blood test.

    Sorry this is scattered, I've got a sick 2 year old today.

    Hopefully someone will chime in if I've missed something

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    beebs  (10-08-2012),MissMuppet  (10-08-2012)

  6. #14
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    Thank you, and sorry OP to have crashed your thread a bit.

    I'm fructose intolerant myself. My family has a history of allergies, intolerances and autoimmune disorders a mile long.

    Gah, why did DS have to get sick so we had to cancel his allergist appointment.

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    beebs  (10-08-2012)

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    Some would disagree with me probably, but I would be *strongly* considering gluten free for your DS (and maybe even your other children if you have any) just based on family history alone.

    There is some interesting reading around about gluten and it's alleged role in autoimmune disease.


    **Not until after testing though**
    Last edited by OurLittleBlessing; 10-08-2012 at 17:00. Reason: more info

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  10. #16
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    Quote Originally Posted by beebs View Post
    Lactose intolerance can be a symptom of Coeliac, in that the bowel get damaged and you can no longer handle lactose until your intestines heal.


    Just to make things more complicated though... some people react to casein which is the protein in dairy (just as gluten is the protein in wheat, barley and rye). DD is very casein intolerant (CMPI). Now that I know what I know about gluten it was an early red flag that there was more going on. Even though we took casein out of her diet (she was on Neocate etc), and it helped a bit, it was never enough to really resolve things on it's own.

    I'll shut up and leave your thread alone now

  11. #17
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    Usually casein intolerance is picked up quite early isn't it?

    I would like to point out that the coeliac panel has around a 40% false negative rate in kids under 5 years and a 15% false negative rate for everyone else. There have also been studies that have shown that the more damage in the intestine due to coeliac the more likely you are to show up negative on the tests

    Basically the whole thing sucks - and there is such a hassle around diagnosis and testing. But I agree with ourlittleblessing and autoimmune links.

    If you are looking at a possibility of coeliac, then yes, it is more invasive, the blood tests and then there is usually an endoscopy that follows - if it is positive. If it is negative and you still can't figure out what is wrong or you have a family history then they will probably suggest a endo in the last instance.

    I would get all testing done before going gluten free, there are plenty of things that mimic coeliac/gluten intolerance.

    It is far, far easier to do the testing and then go gluten free, than to go gluten free and then later on decide to do testing. Which would require a 3 months gluten challenge to get a diagnosis.

    My DS (who is 6) is about to undergo a gluten challenge after being GF for almost 2 years. I am really, really worried about it, am not looking forward to it at all. But there is a small niggling doubt that maybe I got it all wrong, what if it isn't that - what if there is something else going on. Gah!

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