Coeliacs in children

[Nogodsnomasters]

Hello, my son has been sick off/on from March, getting increasingly worse. He had a positive coeliacs blood test (after many many other tests), and we've had a repeat test done 9 days ago which we are still waiting for the results of. The day after the 2nd test I put him on a gluten free diet, because my doctors are being extremely awkward and haven't even done a referral to gastro yet (don't worry I am fighting them).

So it's been just over a week on GF and we're not seeing really any improvements, I know it's early days but I've read a lot of threads where people say within days or a week certain symptoms went and then other symptoms sort of gradually improved.

Symptoms at the moment are: lack of appetite, nausea every day, reflux, constipation (using laxido daily), stomach discomfort, easily tired, on/off dizziness, pale, hasn't gain weight in over a year but is gaining height.

I would just like to hear others stories of coeliac children and their progress on the GF diet please. He's attendance at school is shocking and this illness is now taking a toll his mental health, and tbh mine too.

Think of Al the naturally gf things he does eat
Potato? Rice? Chicken? Veg? Fruit?
Go for those while you try gf pastas breads etc to find brand he likes

P s dds "asd" disappeared on gf diet but of course not same for all

I was a young adult when diagnosed (20) and had been ill for years. A long time ago now, but I remember feeling some improvement within perhaps 3 weeks, but several months for substantial change, and probably a year or so to feel what I now consider ‘normal’. That was I assume because all of my vitamin levels etc were terribly low.

School have sorted a counsellor starting tomorrow but it's the problem of getting him to stay in school when not feeling great physically and mentally in order to see her. I've also filled in a self referral for a community based support hub but haven't heard back yet.

@Nogodsnomasters it's early days and it will take time.He has the correct diet and counselling beginning. There are no answers to how long it will take as it's different for everyone.You could discuss with school what will help whist he is getting better-rest breaks,reduced timetable, toilet pass, time out card? (my DD had all of these at one time or another but this was secondary)

Thank you. He has free access to the toilet and they've given him a time out card too but the minute he starts to feel any of his symptoms he freaks out and just wants to be with me and come home and cries. He also has autism and has only just turned 10. He's on a reduced timetable but it's a struggle getting him into school every day even for a few hours.

His second coeliacs test has come back negative, with a really low IGA of 0.7. I'm beyond pissed off. I thought this was the answer to his suffering 😔

You need to give at least three months very careful gf
Breathe. Give it time.

Okay so saw consultant on Tues who advised his second coeliacs test results were not back and I was like sorry what the GP receptionist told me they were and that they were negative! Apparently these were his immunology test results not the coeliacs screening ffs. I've now had a phone call today to say the actual coeliacs test result is back and it's positive for the second time. I'm so relieved to have an answer. He's started on Omeprazole yesterday and been GF for 4wks now + laxido for around 6wks which we've been steadily increasing (now on 3 sachets a day) as symptoms are still daily. I just want something to work to give my child a break. He's missing soo much school too and he's really smart. I guess I'm just stressed out over the whole situation.

If he is missing school more than 15 days for medical reasons speak to lea officer who deals with such children for access to small group or tutor etc . Maybe hospital school if you local to one?

Hi, what is an Lea officer? We're in Northern Ireland so may have different terms or services available.

Ah yeh ask who deals with children missing school due to illness