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Blood test indicated coeliac disease, what happens next?

(6 Posts)
GebIceWar Wed 31-Dec-14 16:35:31

Hi, this is my first post so I hope I will be able to find any replies to it! A few weeks ago my 12 yr old daughter had a blood test and they said her ttg level was over 100. She has been referred to the royal London, I think this is for a stomach biopsy? I was just wondering if anyone else can give me an idea of what the procedure is now if they've had the same thing with their child. Such as any other tests she will have to have, how long results take to come back, if they put the children to sleep or only sedate them etc.
She has to carry on eating the gluten until she's fully diagnosed, its hard to keep feeding her stuff when I know its doing her harm. At least I presume the blood test cant be wrong if its so high?
I wonder if they automatically check the children for growth hormone issues as well? She will be 13 in a few months and most 10 year olds are as tall as her because she hasn't grown more than an inch or two in a few years. thanks!

CMOTDibbler Wed 31-Dec-14 16:43:04

They'll do a biopsy of her intestine under GA, and then it takes a couple of weeks to get the results back. Its the only test to diagnose CD, so nothing else required.
Its really important that she keeps eating gluten until the biopsy.

Many children grow a lot once diagnosed and on the GF diet, so I imagine they'd see how her growth went.

GebIceWar Wed 31-Dec-14 16:57:35

Thank you, and good to know she will most likely be asleep for it. Considering it'll be a life long gluten free diet I think Id like the proof of a biopsy.

SilasGreenback Wed 31-Dec-14 16:59:44

Be prepared that due to her age if she is on a list of children for the biopsy she will probably be last. Ds had his biopsy at GOSH at 11 and obviously they had to do the babies and toddlers first who couldn't understand why they were being starved. He had a new book and ds game which kept him distracted but was starving when he woke from the GA.

GebIceWar Wed 31-Dec-14 17:06:29

Thank you, I will ensure she has a fully charged iPod! They only just referred her today, so I guess it's going to be a week or two... or three??... before I even hear back. Maybe I can ring them in a week and chase it up.

SilasGreenback Wed 31-Dec-14 22:08:47

Oh and they let me stay with ds until he was asleep - and I was back as he woke up - just missed the tube down the throat bit! He was also disappointed he didn't get to see the pictures, strange child.

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