New here so hoping to learn a few things. Daughter (14) just had diagnosis of Celiac disease by GP. Her Ttg is 18. ESR raised a bit - was 20, apparently (age needs to be factored into that, doc said). No anaemia and basic bloods normal (FBC). She's had a ton of symptoms over last couple of years, all leaning towards Celiac - painful bowels/stomach, cramps, regular migraines, numbness and tingling in hands and toes, freezing fingers and toes, dizziness (fainted once), muscle twitching (esp under eyes), and very low BP. Lots of autoimmune diseases in close family from Crohn's to hypothyroid to Sjogren's. She's been referred for an endo/biopsy but has to wait a month or maybe up to three months as when we see consultant it's not immediately for the endo - meantime, she's been told to keep on gluten (she's been semi-gluten free for a few months as she knows it hurts her instinctively. But without an actual diagnosis, 'slip ups' with school dinners have inevitably been happening.) And now she says she says she found blood in a BM (not much and bright red and it's never happened before. She's mostly constipated). I'm hoping she was mistaken about this and it was maybe undigested food - red pepper skins/tomatoes etc as we've had those in last couple of days. She was a little uncertain about this - one minute convinced it was blood, then possibly thinking it was food. Is a little blood normal for someone with celiac?
Anyway, if anyone in the UK has experience of getting a private appt I'd be keen to learn where and how! Seems impossible for kids to have this privately (I'd be paying, no insurance). Plus, is it usual for the GP to refer to the paed gastro for a consultation then she/he decides if endo/biopsy necessary? I kind of got the impression the referral was straight to endoscopy but I spoke to the consultant's secretary and she said it would be for an appointment only at this stage as he didn't always want an endo. Confused!! So the max wait time she said it could be was 3 months. A long time to feed your child poison. :-( Am I missing something here?
Well thanks so much if anyone has any comments or advice. I'll keep reading through the forums and get to know what's what.
p.s. I had celiac test a year or two ago as I have v obv symptoms but came back neg. I had been gluten-free for a few months. Should prob re-test now!