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Coeliac and 3 year old?

7 replies

Vie8126 · 14/09/2024 09:49

My DS is 3 years old and in nursery full time (8-6 five days a week) as I work full time and just potty trained.

Over the last 6 weeks we’ve had random reports of loose poos not enough that they needed to call me but just a oh he had very loose poo today but has been fine and hasn’t been able to get to the toilet in time. The last 3 weeks there has been an incident once each week of extreme diarrhoea pure water and foul smelling wind. Both times he has had to stay home for 48hrs but the next day been fine then towards the end of the day again started with diarrhoea then back to normality again. No throwing up during these episodes. We noticed this week that when he came home he had lots of little red dots under his eyes during the diarrhoea episodes that then fade.

Over the last month his also been complaining of tummy aches. Firstly I put this down to changes at nursery and maybe a little bit of worry but coupled with the poo incidents seems they might be linked. He is very small for his age despite being a normal weight at birth and wears 18m-2 year old clothes recently bought him something for a 3 year old and his so tiny round his middle they just fall down! He has dropped to just under 25th centile.

Nothing has changed with his diet during this time and been pretty much well during these episodes still playing and chatting as normal.

We went to the GP yesterday as it’s been going on over the last month and he has referred him for coeliac testing. I have tried to make his appointment for blood tests but have been told there is a minimum 5 month wait and know not to cut out gluten in the meantime.

However what do we do for the next five months with his poor tummy and the diarrhoea incidents every time it happens at nursery he has to be off for 48 hours (which I completely understand!) If this was coeliac would he not be struggling every day rather than random episodes during the week or can that happen? His always been fine and never had any previous toileting/diarrhoea would he not have always struggled? i just don’t know much about it and also don’t know how we will manage until he can get a blood test we are looking at going private but then assume he will have to stay on the private pathway is that correct?

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Exactfare · 14/09/2024 09:52

5 month wait for bloods?? Are.you sure? My daughter was recently tested for coeliacs - we did need to book a blood test (within the week) and the test took just over a week to get results back

They can do more invasive testing to confirm diagnosis but the initial test is just a simple.blood test so a 5 month wait seems insane

Mydustymonstera · 14/09/2024 09:57

Absolutely, how on earth can it be 5 months for bloods??? A week or 2 maybe. Surely that’s a mistake. Can you call back the GP.

boulevardofbrokendreamss · 14/09/2024 09:58

5 months?! That is fucking ridiculous

Mydustymonstera · 14/09/2024 09:59

I’m Coeliac, i got my blood test app the week after GP asked me to phone the phlebotomy service to book it. Same for the kids, just phoned, appointment within a couple of weeks. They weren’t as young as yours though.

Vie8126 · 14/09/2024 09:59

@Exactfare yes unfortunately we have to email to book u5 blood tests and I got an automated response saying that due to unprecedented demand the current wait is 5 months and someone will be in touch in due course with an appointment.

I should have added he is also having stool samples done but as he is under 5 the GP has to wait for the hospital to authorise it and then will contact me to collect so can get that done.

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25soexcited · 14/09/2024 10:01

Granddaughter has coeliac ,diagnosed age 4 . She was chronically constipated,lethargic,pot belly,anxious,fussy eater would only really enjoy fruit and veg and avoided carbs ,still wearing age 2-3 clothes.
She was referred to paeds which took a few weeks ,I think . GP never mentioned CD ,paed didn’t mention it so completely blindsided when her blood results came back of the scale and severely anaemic.Did not require further investigation because results were definitive.Pretty sure the actual blood test was
The treatment is mainly dietician led.
Don't go GF prior to diagnosis .
My granddaughter is a different child after a few months GF .

Vie8126 · 14/09/2024 10:22

@Mydustymonstera I could call GP and ask for him to be changed from normal to high priority but because the bloods take place on the children’s ward for u5s I’m not sure what else GP could do to assist but willing to try! We have contacted a private hospital and got prices which is affordable for consultation, bloods and follow up but we couldn’t sustain it after that if we then had to stay on private pathway can you go private to speed up diagnostics then go back to nhs?

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