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Member Since 19 Nov 2012
Offline Last Active Jan 08 2014 09:12 PM

Posts I've Made

In Topic: Four Year Old Positive Blood Test - Awaiting Biopsy

12 January 2013 - 05:15 AM

We had to wait 2 months between my 3 year old son's first positive blood test (which was highly elevated) and his first biopsy. The biopsy turned out to be inconclusive, much to the surprise of the gastroenterologists. They fully expected to see damage, but just didn't. Their next step for us was a follow up biopsy, some three months later. All this time, he has been on gluten (with the exception of 10 days after biopsy 1). I agree it is hard to keep them on gluten when you are just thinking of how much damage/suffering it could be causing, but I would say that for at least the first biopsy you must remain on gluten. A clear diagnosis of coeliac is much easier to deal with than an inconclusive one (and a follow up biopsy ..) If your child's symptoms are really affecting their quality of life, there should be a case for reducing the waiting time.

Cave mum, i see you got a diagnosis for your son. I wonder why the first biopsy didn't show damage.
My son had his gastroscopy on the 10th. They said they did not see definite celiac and would have to wait for the biopsy results.
He had some bleeding at the biopsy sites and had to stay in for another 6 hours afterwards, was not allowed to eat until 1pm either - he must have been starving.
Then, some woman came along, said they needed more bloods and started jabbing him with needles. He was pinned down by 3 people while he screamed and wailed - until his gastro came by - a complete fluke of timing - and said "what are you doing? stop! I never allow that to be done to my children!" and the blood woman skulked off muttering that she was only doing what she was told. It was so freaking traumatic for me and him both. He has told me he never, ever wants to go back to hospital again. So, if they tell us his was inconclusive and they want to do it again, I will be devastated!

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