Coeliac diagnosis

[BakingBunty]

Hi there, DS (13) has just had a positive blood test for coeliac disease after months of stomach issues, rashes and lots of anxiety about needing a poo at school. The GP has referred him for an endoscopy and he has to carry on eating gluten until that’s done. However, speaking to a coeliac mum (who is also a GP!) it sounds like this is not right… if anti TTG is over ten times threshold (which his is, at 127) then no endoscopy is needed for kids. I REALLY don’t want him to carry on eating something that is making him unwell, potentially for up to two months, while we wait for an appointment. And I also don’t want him to have a totally unnecessary procedure. But if we take him off gluten, we might have to reintroduce for 6 weeks if GP insists endoscopy necessary. Part of me just thinks sod it, let’s just stop the gluten, but I also want him to be “in the system” for follow ups etc. Any advice very welcome!

If he is eligible for diagnosis on bloods only based on results so far, I would expect the gastroenterologists would write back saying so rather than booking him for an investigation he doesn't need. The relevant guidelines update was relatively recent so your GP may just not be aware of it (or used to adults where the pathway might be different).

Thank you so much @Unseenentity, really hope this will be the case. Just want him off the gluten!

36 here & awaiting endoscopy. I've went GF while I wait because I was told it is a considerable wait, possible 1 year +. Just means I can't take a cancellation app & I'm okay with that. I thought 2 blood tests 3 months apart over 50 meant automatic diagnosis, that's what my area is

Any chance you could pay for a private test, with referral from your GP/consultant?
Have recently done this for a different test (but endoscopy may be in near future- waiting for specialist to get back to me this week) and wait list went from 6 months on NHS to 3 days. Was worth the £350 as her meds were changed within 48 hours after the scan and she's seen some improvements. A quick Google says a scope may be £2k + but no idea how accurate that is.

So basically the GP can't order an endoscopy, that is arranged by a pediatric gastroenterologist which is what the GP will have referred your son to, that's just how the NHS works. When you receive an appointment for this gastroenterologist they will likely arrange for a second blood test, if BOTH tests are 10X the above threshold then a diagnosis can be made without the endoscopy. However he will have to keep eating gluten until he sees the gastro consultant.
I've just gone through the exact same thing with my son 8 months ago. The GP kept saying he'll need an endoscopy, consultant said wasn't necessary based on both tests.

Grandchild diagnosed purely on blood test result. Gastroenterologist did not request endoscopy. I hope your son starts feeling improvement once on GF diet . It’s hard at first and a lot to think about but it does get easier.X

The guidelines around diagnosis are different for children and adults.

Call Coeliac UK for a support and information so you are clear about your position.

Then get pushy. Speak to the GP and quote the NICE guideline. Explain that in his circumstances your son doesn’t need a scope to make a formal diagnosis - it can be done on bloods alone. Once you’ve got this established - and a diagnosis from the GP - you should be able to take him off gluten.

Once he’s been formally diagnosed he should be referred to a specialist paediatric dietician who will help you plan a healthy, balanced gf diet.

Reach out to any mums, within your networks, who have kids with coeliac - they will be your new best friends.

Does it state the threshold alongside the results? Just asking as the threshold varies across labs.

Check out this link: https://www.coeliac.org.uk/healthcare-professionals/diagnosis/how-to-test-children/
Was his EMA positive too?