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  1. #1
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    Default Kids with Coeliac Disease

    So I've done some searching and haven't found any threads on this here. My daughter has been officially diagnosed for 3 weeks now and I just want to chat to other mums that faces the same issues. We moved 2 days after her diagnosis to a property and we are 2 hours from the closets shops so I have to be super duper organised to make sure she's not going hungry.

    Anyway anyone else out there with little ones with CD.

    My daughter is 6 and we've gone mostly gluten free. We all eat a gluten free dinner and I only bake GF now.

  2. #2
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    Can I ask how you knew she had trouble?

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    My DS is being tested for possible Coeliac disease at the moment. He is teeny tiny (10th percentile for weight) and has been steadily losing since age 2. He also has random bouts of vomiting and severe diarrhoea at times.

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    To be honest it was a lucky guess. Since Feb 2014 she'd be having tummy pain, she was treated for reflux from Feb to November and it was working well and she wasn't having the pain constantly so we thought we'd solved the problem. Then she started to complain of a sore tummy again in the afternoon and the tablet she was on was one that provided 24hour relief. So the gave her some gaviscon to have in the afternoon and sent her for an ultra sound and did some blood tests. The blood test come back that her antibodies were high for coeliac disease so then she had another blood test for the gene test. That came back positive so we were told to go on a gluten free diet but I decided to get a 2nd opinion and we went ahead with a endoscopy for them to take biopsies and that came back as a positive for coeliac disease. So really she had none of the symptoms and it was a total fluke that it was diagnosed. She's always been about 25th for height and weight so that wasn't a sign.

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    My DS is having the serology test tomorrow after I was just diagnosed so following.

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    Quote Originally Posted by Donnab739 View Post
    My DS is having the serology test tomorrow after I was just diagnosed so following.

    Good luck with it. Are you all having the gene test done? Since you have been diagnosed with it the gene test will be bulk billed for your immediate family.

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

    beebs  (25-02-2015),Donnab739  (25-02-2015)

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    I'm coeliac, two of my kids have the genes, one is negative and one isn't showing any symptoms so haven't had him tested. One of my boys has had ongoing gut issues, chronic reflux, gut pain bad stools, but his biopsies were borderline and the second negative, not really sure what is going on with him. Not sure if they've missed the damage or it is something else entirely. Only time will tell!

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    Donnab739  (25-02-2015)

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    Quote Originally Posted by Rodeobull View Post
    Good luck with it. Are you all having the gene test done? Since you have been diagnosed with it the gene test will be bulk billed for your immediate family.
    Not sure if it's the gene test or not. I don't have the referral it's still at the drs office as originally when I was there she didn't say to have it done now but then called to say I should.

    Going to pick it up this afternoon to check as I don't want to have to do two blood tests for him. He's only two so it's going to be traumatic enough without having to repeat it for something I could have done once.

    Thank you heaps for mentioning this as I didn't know. Will postpone his test til next week if she hasn't ordered the gene test as I won't be able to see her until Tuesday now.

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    My eldest DD who is 8 has her appointment on Monday. We usually eat gluten free as it is but when she occasionally has some, she can either have vomiting, belly pain or her Blood sugar levels go crazy (she is a type 1 diabetic so coeliac and Type 1 are in the same family).. Her blood work came back high so FX they give us some answers on Monday. I was told not to stop gluten atm until all testing is done as it can give a false negative.

    I have some great recipes if you are interested? I've been making bliss balls, muffins out of nut butter and banana bread out of coconut flour. Always have a heap in my fridge so she can snack on whenever she is hungry, also helps that they are low carb for diabetes reasons.

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    Quote Originally Posted by BabyG4 View Post
    My eldest DD who is 8 has her appointment on Monday. We usually eat gluten free as it is but when she occasionally has some, she can either have vomiting, belly pain or her Blood sugar levels go crazy (she is a type 1 diabetic so coeliac and Type 1 are in the same family).. Her blood work came back high so FX they give us some answers on Monday. I was told not to stop gluten atm until all testing is done as it can give a false negative.

    I have some great recipes if you are interested? I've been making bliss balls, muffins out of nut butter and banana bread out of coconut flour. Always have a heap in my fridge so she can snack on whenever she is hungry, also helps that they are low carb for diabetes reasons.
    Oh I'd love any recipes you'd love to send my way. I'm finding it hard to be stocked up usually she would eat a lot of fruit and veg and that is fine for the first 2 weeks after out shop but then the fresh fruit starts to go a bit yuck. Apples and oranges last the month but she eats them quickly. We have a lot of frozen and tinned fruit that helps a bit. I've made a few things that she's enjoyed but still need a lot more to feed the rest of us. Thanks


 

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