DS - Coeliac disease lack of information Update page 3

[MrsSevSpaghetti]

My daughter had genetic testing so she did not need a biopsy. Our consultant said there was a move away from doing them if the other indicators were strong.

I don’t know if there is a way you can contact your consultant (or perhaps GP can) as just being off gluten is easier.
I would not come off and go back on.

I saw a massive change in my daughter within a few days of being GF. It’s been 7 years now and we do okay, what’s available has grown a lot in that time.

[Princess Ariel]

Update! I’ve spoken to the consultants secretary this morning who said the consultant is actually on A/L on the day I’ve arranged Jacobs appointment! She advised me that because his coeliac result was so high and he’s symptomatic and so underweight (only 1st centile) to contact my GP again and request an urgent referral, I’ve done this and the GP has agreed to make an urgent referral for him today so hopefully we should get an appointment sooner rather than later now 🤞 the whole thing has been an absolute nightmare to be honest.

[Princess Ariel]

Another update! GP has just phoned me and said that she has spoken to the on-call consultant this afternoon who has said that because of the severity of his symptoms and the high result of his coeliac test that they won’t need to do a biopsy and to start a gluten free diet immediately!
I’m glad I’ve finally got advice from a consultant but honestly over the last couple of days I’ve been given so much conflicting advice and I’ve had to really really push to get any answers or urgency from professionals at all.
Thank you everyone on here for all your help and support over the past few days, it’s been an absolute lifesaver