Is it crazy to spend this?

[Msqueen33]

My youngest was diagnosed with autism and an autoimmune disease last year. She's changed so much in two years to a child we don't recognise. The autoimmune disease has done her a lot of damage. I took her to the gp as she's tired, barely eats, pale, upset a lot...they ran all the standard tests and they came back normal. But having asked for the results I've seen they run very basic tests most of which there is a more accurate version. It seems these aren't available on the NHS.

The tests I would like done would cost £300 privately. I'm worried about her and although we aren't rolling in money we could afford it and wouldn't be too pinched. But am I being crazy to spend this on blood tests? I'm worried as she ticks a lot of boxes for a certain deficiency that can damage the brain and is normally associated with her autoimmune disease in that because her gut is damaged she can't absorb nutrients.

If she is not thriving despite a good few months on gluten free diet then she needs review by a specialist. I can see your motivation for organising tests but she is only little and it would be better if a consultant ordered what they feel are needed and then interpret the results. You don’t want a situation where she has to have a further venepuncture for confirmation at nhs hospital.
I would be pressing for a review appointment to discuss best next step. Will your paediatrician accept email/ written queries?why not try their secretary and bypass your GP ?

@yikesanotherbooboo the problem is she's been discharged by absolutely everyone. I'll see what the gp says and although the last gp ran the tests they don't seem interested as they're within normal range. I'll ask for a referral back to gastro as well.

Not crazy at all if you have it. But I'd just also say have you thought about next steps when you get the results ? I don't know anything about the conditions mentioned here but it made me think that if you do get an answer, and the NHS hasn't been able to help so far, what will you do next? But I really wish your DD well

That is a restricted diet. I agree that looking at ways to expand her diet would be helpful. Can she/ will she take any supplements?

Msqueen33 Healthunlocked website has a pernicious anaemia forum and you can get loads of advice from them re B12 deficiency.
People also self medicate because the NHS keep moving the goal posts on what is classed as "normal range".
Private blood tests definitely the way to go because at least you will see the results and know what you are dealing with.

@butterfly56 that's why I asked for a copy of the results as the UK has such low ranges.

She used to have an amazing diet and ate really well until she progressively got more poorly due to the coeliac. She barely eats at all these days. Once we've got privately for bloods will look to supplement her as she some supplements skew the results.

To be honest I'm not sure on next steps but I suppose I'd like a form of proof to push the NHS a bit. It was hard enough getting a simple blood test for coeliac and as the results sit within the normal range they don't see the need to do more.

Thank you for everyone's well wishes for my dd. It's really appreciated.