DS had initial postie result for coeliac - what now?

[TheInimitableMrsFanshawe]

Hi, my DS (4) had a positive test for the coeliac antibodies. GP is referring him to gastroenterology but I’m not sure what’s next or how long it’s likely to take. I realise this is dependent on a number of things, but a general idea would be really helpful. GP said “up to 12 weeks but they try to be quicker with children”. I’m not sure whether the positive result means he definitely has coeliac disease or whether it could still be something else.

The whole thing makes me feel so sad for him - I know it’s so much easier than it used to be but while we wait for a diagnosis we have to keep feeding him food we think makes him feel awful and dealing with his behaviour as a result.

Postie result should be positive, obvs. Bloody autocorrect

At this point you do nothing, clinic will be in touch and may want to test further

While you’re waiting start familiarising yourself with the free from isles at the supermarket, take a look at coeliac UK who do a buddy scheme for parents of newly diagnosed children and come and talk to us, we’re all friendly

I’m an adult coeliac but have 2 teens who are also coeliac so may be able to help if you need anything

Above all else, embrace it and remember your child is soon going to feel so much better with your help!

Oh and Tesco’s gf donuts are fab

Thanks Schroedinger. At the moment I'm just busy worrying about all the difficulties it's going to cause. He's already a fussy eater and some of his favourite things are wheat-based. Maybe feeling better will encourage him to branch out

Hi my 13yr old girl was diagnosed a year ago and I was terrified, what about friends parties, sleepovers, college, eating out, holidays etc. But it's actually ok! It just takes planning. She had an endoscopy and biopsy they confirmed it but had to keep her on gluten until it was confirmed it was awful as j felt I was poisoning her. As soon as we knew she came off gluten. She loves porridge so she kept eating gf Porridge and gf biscuits with gf oats in and she got a bit better but not completely. Since taking all oats out she is well got the first time in years.
You need to be organised I send her in with a really nutritious packed lunch every day to school . We have learnt to cook gf pastry and cakes together. I got rid of all gluten foods bar some bread . My son who is not coeliac has a separate bread bin & toaster in the corner of the kitchen with his own board and knife and we are careful not to cross contaminate , separate jam and butter etc. It sounds like s lot of faff but a year down the line it's second nature and she won't remember anything else. She takes snacks to friends houses and gf pizzas when she goes for sleepovers.
Coeliac UK have been amazing their food & drink directory and food checker app are great you can scan barcodes on pre packed goods & it will tell you if it's ok if not.
Stock up with gf crumpets, Pitta breads, breadsticks and cereals. All major supermarkets have great gf aisles now. We make pies with gf puff pastry and use Pinterest and the internet for ideas. Since diagnosis she's grown over 2 inches and has energy again. It really affects their mood and in my daughter's case joints and muscles and she slept Everyday after school for 2 hrs as she was exhausted.
Eating out & holidays with a little planning have also been fine. She's fine an exchange to France and s family holiday to Portugal you can get coeliac cards in any language in line to show to cafe staff and it's worked a treat. She is quite sensitive do fifnt touch anythibg may contain. On diagnosis she cried and I promised she'd never go without so we have found ways of doing all her favourite foods gf and it's been a good way to bond over the stove! Check labels gluten lurks in weird places, some oven chips, chocolate etc.
Don't despair it's all ok the important thing to remember is that we'll managed coeliacs have no greater chance if associated health problems, cancers, infertility etc than any other member of the population .
The downside is that gf foods are expensive!! So we make a lot ourselves. Felt free to message if questions.

My 4yr old has just been diagnosed. He was a terrible eater and ate loads of gluten. We waited about 6 weeks for an endoscopy at our local children’s hospital (NHS in UK) after the blood result. They were brilliant. We then saw a dietician v quickly. We have found that he feels much better but not going to lie to you it is challenging with changing the food. He has been good in understanding he has a “special tummy” and can’t eat things. Good luck op - it’s not easy but it will get easier......

My Dd who’s now 15 years old was diagnosed with coeliac disease 2 years ago and the transformation in her health is amazing.

She didn’t need to have an endoscope to detect coeliac disease as her blood results were off the wall and she was put on a massive dose of iron and vitamin D straight away, I still feel like such a bad parent that I didn’t pick up on it sooner.

Cooking and preparing gluten free is easier than I thought, with separate utensils either side of the cook and separate baking trays to stop cross contamination, But I soon found that reading the ingredients on packaging in supermarkets was a way of life and we as a family all still eat the same but just alternatives.

For my Dd good bread was what she missed the most and we had tried them all from the supermarkets, but luckily she gets juvela on prescription which I’ve noticed they have started to sell in Tesco recently and that’s really nice.

As soon as Dd was diagnosed I joined the coeliac uk and the amount of literature and help has been great.

The only thing that still needs improvement places that provide gluten free food when eating out but it has got better in the 2 years since my Dd has been diagnosed so places are more aware now which is good, I think for restaurants it’s not about dealing with the gluten free element of the food they find difficult it’s the issue with cross contamination that they struggle with.

It will take time for it to become a normal way of life checking everything and if in doubt about something don’t buy it.

My 3 year old DD was diagnosed this year. Positive bloods in the November, initial gastro appointment in the March, endoscopy and biopsy in May, results beginning of Sept. It was a long old process with a couple of lost referrals along the way. Transition to gf was fine as I am coeliac.

Do nothing now, keep him on his normal diet (so don't exclude gluten yet) as they might want to do a gastroscopy to diagnose properly. My daughter was diagnosed at 4, switching her diet was relatively easy but she does still get sad about not being able to eat certain things (but in the UK there are so many good GF alternatives nowadays - I always go a bit wild in the free from aisle when we're over in the UK!)

We too have had a positive blood test for 13 yr old DD. Our GP phoned yesterday to tell us that a blood test results was ‘strongly’ positive for coeliac (TTG was 4965; normal is below 20) and advised us to put her on a gluten free diet straight away. However, everything I’ve read so far suggests you shouldn’t remove gluten until after seeing the gastroenterologist as they need you to still be on it for the other tests (we haven’t even back to see the GP yet). I phoned back the GP surgery to check and they confirmed we should remove gluten now. Anyone else asked to remove gluten before seeing the gastroenterologist? Is it because the TTG is so high do you think? We aren’t seeing the GP for another week and I will show him what I found on the Coeliac UK website then, but wondered if this was normal?

Hi everyone, sorry, there has been a flurry of replies since I last checked back!

We saw the consultant today and he has been given formal diagnosis. No need for gut biopsy, he took one look at his bloods and the symptoms I described and that was that. He will sort out a referral to the dietician and he suggested that, mentally, it’s a good idea to pick a date to go GF as d day. Dr has also said that, from what I describe, I am probably coeliac too so that’s going to be interesting...

Like JJ DS is a fussy eater and I have some concerns about that. I guess it will be trial and error (although even getting him to do the trial bit will be fun ) and hopefully he will get better at trying things.

How did u find out your child may be coeliac ?

My 5 year old son has had 3 tummy bugs in 2 months and now I'm questioning if something is underlying.

Grateful for responses n sorry to hijack thread