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(3 Posts)
taurean Mon 21-Dec-15 20:40:33

Hi, my DS10 has had a test for coeliacs today, we saw the Dr as while he's always suffered with occasional diarrhoea after eating and occasional excessive wind, it's become much worse recently. He does, and always has, eaten a lot of wheat (shreddies and toast for breakfast every day and often toast before bed). Can you go from mild symptoms to worse without a change in diet? He's very tall for his age (5'4'') and always been slim but not underweight. I realise we need to wait for results but I've looked at some websites and can't work out whether it's possible to suddenly get worse. He also been very tired recently. Any insight appreciated!

FrancisdeSales Fri 01-Jan-16 18:29:45

Hi Taurean our middle dd is in the process of diagnosis and the GI doc at the Children's Hospital thinks she had celiac (we are in the US so please excuse different spelling). She is 12.5 and has had a variety of GI systems for years - including a distended tummy.

We were living in Germany until recently and she had a full work up there including the sedation abd test at hospital for celiac but no confirmation and her bloods were coming up normal. This was in the past couple of years.

Now the doc in the US said her blood work is clearly pointing toward celiac and she said it is possible that the disease develops overtime and doesn't show up in blood tests for a while.

Whatever type of test they have they told me normal would be around 19 and high normal around 25. She was 100. We are now trying to get her full records from Germany because we never heard from the hospital about her final results and the GI doctor here wants to see if those were positive before putting her through the testing again.

I would love to chat on this thread about it all because if she has celiac we will all need to be tested (her paternal GF has celiac) and I think we will go gluten free as a family as it will be easier. We all have "allergy shiners" dark shadows under the eyes but my DH and DD with the diagnosis have the most pronounced so will be interested to see if there is a connection. Apparently they estimate 97% of celiacs are undiagnosed or have the wrong diagnosis.

Natsku Tue 19-Jan-16 09:43:56

My daughter was diagnosed with Coeliac disease last summer. Her symptoms got worse (belly pain mostly) without her diet changing before we asked for the blood test.

Although its horrid to see them suffering you have to make sure he stays on his normal diet until he's had it confirmed (and usually doctors will insist on a gastroscopy and biopsy to confirm even if the bloods are really high - my dd's levels were 98 for one test and 1000 for the other - both dropped to 5 now on the diet)

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