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Probable coeliac diagnosis.

(4 Posts)
indyandlara Tue 30-May-17 19:13:12

My daughter is 7. Over the last few months she has had instances of severe stomach pain. She has had a history of mesenteric adenitis and it seemed this was similar. I also had suspicions it was anxiety related. 2 weeks ago she had a huge episode and I spoke to her gp who wanted her to be tested the next day to see if she was coeliac. I dismissed this in my head as a precaution and no way was this the case

Today the gp has called to say her bloods show nothing sinister but the coeliac screen result was 200 (I'm not sure 200 what?) and this would strongly suggest she is in fact coeliac. I'm to expect contact from the consultant very soon, keep her on gluten in the meanwhile and there may or may not be an endoscopy.

I wonder if anyone has any early on in this diagnosis advice? I'm presuming there's no chance the results are wrong. Gp said she's s run higher levels but these were significant. I'm not sure what normal boundaries even are.

indyandlara Tue 30-May-17 19:13:38

*seen higher not run higher.

lamado Tue 30-May-17 20:17:38

Both my sons were diagnosed coeliac with ttg levels (I am assuming this is what the 200 refers to) lower than 200. DS1 was <50 and he had to have an endoscopy to confirm diagnosis. DS2s levels were >100 and he was diagnosed on bloods alone.
What should happen next is you should be referred to a paediatric gastroenterologist. As well as testing ttg levels they will test for the coeliac gene. The advantage of a high ttg level is that they may not need to do an endoscopy to confirm diagnosis.
Keep giving your DD gluten daily. Push for an appointment as soon as you can get one, it's not nice to keep feeding your child 'poison', but it is necessary for diagnosis.
The good news is, if it is coeliac disease, your DD will soon be feeling better. Although going gf can be quite daunting at first, you all quickly adjust. Both my boys (diagnosed at different times) started feeling better after a few days, but it took around 6 months for them to fully recover.

CoeliacK Wed 31-May-17 16:48:29

If you havent done so already check out the details on Coeliac UK's website about children and coeliac disease:
www.coeliac.org.uk/coeliac-disease/coeliac-disease-in-children/

And if diagnosed they have a whole further section to help:
www.coeliac.org.uk/gluten-free-diet-and-lifestyle/support-for-parents/

Their helpline can also answer any specific questions but as your gp and lamado say - make sure you keep your daughter on a regular diet containing gluten.

Good luck!

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