Gluten Free Guerrillas

Blood tests and IgA deficiency

Hello I've been referred for a gastroscopy for coeliacs but my TTG was negative and my total IgA was really pointless it just said >0.0005 g/L when NICE guidelines say IgA deficiency is if <0.7g/L and that if TTG negative then need to test if person is IgA deficient. I don't want gastroscopy if I don't need one and am so frustrated that apparently in Wiltshire they don't follow the NIcE guidelines for coeliac testing! Any one got advice or experience please?

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Hi,

You could try discussing the issue with these people to see if they can help:

wiltshireccg.nhs.uk/have-yo...

Sometimes they can mediate on your behalf. Maybe they can encourage your local services to follow NICE guidelines (or find out why they're not!).

The equivalent PALS (Patient Advice and Liaison Service) in my area helped a client I was supporting at the time to resolve an ongoing issue she had.

Best of luck, I hope you can get the answers you're seeking.

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Thanks I actually spoke to PALS and they encouraged me to speak to surgery practice manager who got the GP to ring me and explain that the NICE guidelines are just guidelines and she couldn't get the tests suggested. It's a bit crap in my opinion.

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