Suspected Ceoliac 4 year old! Advise needed

[Dawn1991]

Last year my daughter who was 3 at the time (6 months ago)has had 2 positive tests for Endomysial IGA antibody and her TTG levels are 34.4k U/L so only slightly raised on both tests which were 6 weeks apart(she has started refusing to eat bread etc and excluding food) and low vitamin D. I’ve been to see the consultant(gastroenterologist) today and they are saying she needs a endoscopy biopsy and I’m really worried about it as I've read people have had false positives on the blood test. Has anyone else had to go through this my anxiety is through the roof as she will need to be put under for the procedure!

She needs to be eating a couple of slices of bread a day for the endoscopy. My needle phobic then 7 yr old son had to go under for it and they were brilliant with him. He remembers nothing, me however paced up and down waiting.

Thank you for your response ☺️

The staff do this every day, so they will be lovely with her. She's so little she won't remember most of it.

Have they told you she needs to be eating gluten every day? It's to make sure they see the reaction her body is having.

If you need community, there's a great area of tiktok where coeliac and parents of coeliac kids post. I found it really helpful when our eldest was being investigated for coeliac.

It's scary now, but it will be normal one day x

Oh bless her. Normally guidelines say endoscopy not needed for kids but I guess with her results being only just raised they want to be sure before labelling her.

Dd had an endoscopy when she was 16yo. She was ok, it’s a while ago now so my memories are slightly hazy. I think she was sedated rather than a GA. I remember being with her in the unit immediately after the procedure and she was like a space cadet, but happy space cadet so she can’t have been in pain, etc after.

dd was an inpatient when she had hers done as she was quite poorly and had been admitted as an emergency after collapsing with chronic malnutrition. She’d been waiting months for an endoscopy and was vomiting every day. In fact she was so ill we’d made the decision at the weekend to not bother with the endoscopy and just stop eating gluten and then she collapsed on the Monday.

hope your Dd doesn’t have to wait too long.

Than you for all the positive comments I’m just a very anxious person 😩 yes they’ve told me to give her gluten for 6 weeks but it’s extremely difficult as she associates eating certain things with having stomach ache I’m just not sure if maybe false positives? Is it possible to be endomysial positive and not have ceoliac?