Neurological symptoms of coeliac

[Msqueen33]

My three year old was diagnosed with coeliac a few months back. It's affected her a lot more than her older sister who was diagnosed after her. I thought the neuro signs would fade but we know she's recently been glutened so that's set her back but she's so miserable, tired, withdrawn and irritable still. I've asked to be referred to the hospital again.

Your post caught my attention - my 8yo coeliac was recently glutened (by school!) and I was thinking about the neuro effects this morning - he was glutened on Friday and has been very anxious and moody and angry all weekend.

A few months is not very long in the scheme of things, and it does take time for the gut to recover - I think until that happens, the neuro effects won't go either ('leaky' gut letting too-big molecules through to bloodstream and thus brain).

My DS was diagnosed age 4 - his biopsy showed Marsh level 3c damage to gut (total flattening of villi). It took two and a half years before his blood tests were down to normal levels, which apparently is not unusual for that level of damage. Apparently the body can carry on producing the damaging antibodies for a long time after being gluten-free (it can take a long time to 'forget' to do this).

How did your 3yo get glutened? Poor little thing, it is absolutely horrible.

To be honest we aren't sure but she developed the coeliac rash (she's never had it even before she was diagnosed). Gp confirmed it. We've been referred back to her hospital to see why as she's still so upset and irritable all the time and she's definitely very sensitive to gluten. She's at nursery so wondering if it's happening there as she's still displaying symptoms of coeliac despite being gf.

It's hard when they're so young. Is it the sort of nursery that has snacks always available? So she might be helping herself to the 'wrong' snacks? Or possibly they are storing/preparing her snacks incorrectly and they're coming into contact with other food?

Cross contamination is huge issue with my dc. While schools etc are very good at reading labels and not feeding them gluten directly, they rarely understand the finer details. Chips fried in the same oil, the same knife or spatula used, the same spoon stirring both pasta types. I have asked the school nurse to go in and talk with the teachers as it is something that happens a lot. This type of contamination is enough to make my dad vomit and be ill for a week. Now at school she bakes first, she gets any party food first to help prevent such issues.

*dd even...