Has anyone’s had a child that has been given an official diagnosis from positive blood results alone ?
She has been referred to a gastroenterologist but having been through the whole process myself feel uncomfortable about her having such an invasive procedure (endoscopy)
She is very positive about feeling better and eating gluten free (she’s used to it as I have been GF for some time)
Any feedback would be really helpful.
Thanks 😊
Written by
Clared2830
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I don’t have children and the following might be somewhat of a complicated answer. Hopefully it will be of some use though.
Your main problem could be that she is already eating a (largely?) gluten free diet. The endoscopy looks for damage caused by ingesting gluten. No gluten = a high risk of a false negative result. A gluten-free diet should not be commenced until ALL necessary tests are completed.
The following might help you to sort out what is necessary for her:
The NHS has to take heed of any NICE guidelines that are put in place. In the case of Coeliac Disease, these guidelines are known as NG20.
UK Nice guidelines NG20 recommend that a doctor should “Refer children with positive serological test results to a paediatric gastroenterologist or a paediatrician with a specialist interest in gastroenterology for further investigations for coeliac disease...” (P. 75).
They go on to say:
“The group [Responsible for the NG20 guidelines] recognised that an endoscopic intestinal biopsy is not always available as an option in paediatric populations as it can be highly distressing for both the children and their parents and also requires additional care and costs due to the need for general anaesthetic.” (P. 71)
Later they add:
“In children, the most effective strategy was one that combined serological assays for IgA tTG and IgA EMA and HLA DQ2/DQ8 genotyping...” (P. 73)
However what the guidelines recommend compared to what does actually happen in practice can be very different !
It is possible to diagnose on a blood test alone, but only if antibodies are above a certain level. Certainly Edinburgh hospitals say they will go solely with the blood test if the antibodies measure above 70 (above 100 for adults).
Has she been eating gluten in the lead up to being tested?
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