Coeliac disease in kids - what were their symptoms.

[HelloThereObiWan]

GP is querying coeliac disease for DS9 and he'll have to have some tests done. Just wondering what other parents experiences are. What were the symptoms apart from the obvious bowel ones etc. How are you finding managing their diet? DS loves pizza and will be devastated to have to give it up!

DD had pale stools, stomach migraines, a distended tum', and a permanent gutsache. In addition, she was a permanent guts ache! Her tummy aches were worst after eating such joys as chicken mcnuggets. There was also general failure to thrive, she was a bit of a runt.

Management of a coeliac diet is very easy over here, there are lots of gf alternatives, and no, DS will not have to give up pizza, lol. Pizza express, in particular, is very gf friendly.

He was pale and poorly all the time. He was smaller than his peers. It wasn't a diagnosis that came easily because he didn't complain about his stomach and there was no history of it in our family.

He doesn't like pizza, which is actually a pain because that's one of the easiest and most available gluten free options to get your hands on if you are out and about.

I make all ds's bread now because the supermarket options taste weird. But otherwise, he eats well and we manage his diet easily but it's a bit of an adjustment to start with.

His health improved really quickly once on the gf diet and four years down the line and he has caught up in height and overshot a little.

I was diagnosed coeliac at 13, and am now 35. I actually had zero symptoms and they found it as a result of finding it (by accident!) in my mum and saying to get us kids tested as it's hereditary.

I can't help on the symptoms therefore but I did want to reassure you about managing diet etc.

There is SO much on the supermarket shelves these days (I had to get bread and pasta on prescription from the chemist when I was first diagnosed!! Madness now!) and much of the "normal" stuff is GF and clearly labelled as such - you don't always need to get it in the free from aisle where typically it costs more!
There are easy swaps to make as a family too - so cornflour for thickening rather than traditional roux style sauce, passata instead of jar sauces etc.
the special GF brands where needed (eg to replace a pizza!) are now excellent - you'll get plenty of advice about which are better than others! And restaurants almost all have a GF menu. You can even get dominos to do GF base (although you may choose to be careful depending on level of sensitivity as most of the stuff they prepare is not GF obviously!)

What other stuff does he like / you'll worry he will miss? We can try and help suggest swaps!

As a family you could on the whole swap to GF without anyone noticing - my family prefer GF pasta now anyway!

Lack of growth, stomach pains, chronic constipation.

Quite easy to get lots of GF foods in the supermarkets now, though they are more pricey than standard stuff.

FYI vegan Cornetto’s are gluten free

We also love the Schar brand of GF pizza bases. Then just top with pasta sauce, and toppings of choice!

Also, the penne GF pasta from Sainsburys. Just be very careful not to overlook GF pasta or it falls apart.

Thanks all, good to know he won't have to give up pizza. He loves Pizza Express as well so that's good to know. He also loves pasta.

It's interesting that someone mentioned being pale because DS is quite pale. When he was a toddler he towered over his peers but now he's quite short in comparison. He's also quite grumpy a lot of the time.

Pale, tired, skinny, small, persistent bouts of feeling sick/being sick. (Every week). Anaemia. Low vit d

We took DS to the GP for lack of growth, and he was pale and lethargic much of the time when we look back. He'd also had occasional episodes of sickness and pale, sloppy poos from time to time and didn't like things like pizza, sandwiches or cereal - seems blindingly obvious now!

He was initially found to be extremely anaemic, and then the coeliac bloods came back a few days later decisively.

We have found him eating GF to be far easier than we ever thought it would be - it is more expensive, but we rarely worry about eating out. Plenty of GF pizza options, both from the supermarket and in restaurants.

Ds was constantly bloated and constipated for several years, I was back and forth to the GPs and they would test his stool and often say to eat more fibre. My ds had dry skin on and off and he also had corneal dystrophy. His height is also stunted. When he turned 10 every meal that contained gluten, he would need to go to the toilet immediately. He then had diarrhoea and was pale. I saw a locum gp who suggested a blood test. From that he was diagnosed immediately, his level was so high he didn't even need an endoscopy. The consultant at the hospital was shocked that he hadn't been diagnosed sooner given all the symptoms. Within 6 months of a gf diet he has changed so much. No constipation, no bloated tummy, no eye problems and no skin problems. His height has slowly increased but he is still much smaller than his peers. All round he feels much better and isn't even tempted by what was his favourite food (donuts!) We make a lot of gf from scratch and we all eat gf in the house now. Becky Excell has a great cook book with lots of fantastic recipes.

My DD was diagnosed at 18 months. Pale, delayed growth, distended stomach, constipation and vomiting. Recovered really quickly after switching to gf but it’s really important that you keep you DS on gluten while they are doing the tests.

Switching to GF was easy enough. Cross-contamination is the thing to look out for once you’ve got used to excluding gluten. We find the social stuff (birthdays, meals out etc) the hardest but that’s because I don’t like imposing on people and find it socially awkward when people have made, eg, a gf cake but I don’t trust that they’ve done it in a way that is safe for DD. It’s taught me to speak up for myself and my DD which I think is a good thing.

Good luck!

Friend’s daughter was slightly tired, which wasn’t helped much by resting and had really smelly farts. That’s about it, I remember friend worrying she was fussing over not very much, but she had an inkling that something wasn’t right!

DD was diagnosed at 4. I asked for a test because I have coeliac disease (and her dad did too), she didn't have much in the way of symptoms except belly aches and very stinky farts - they smelt like death!
Got DS tested recently and the doctor said they don't like to test unless they aren't growing as expected so I guess that's one of the main symptoms they look for .

Is it possible to be coeliac without a positive blood test?

DD has been on a laxative for 6.5 years now due to significant constipation being hospitalised for enemas several times, always feels sick, doubling over with cramps, refuses to eat bread of any type and hates McD’s, breadcrumbs on fish fingers and scampi etc yet results on both occasions say negative.
Growth is fine but does have severely dry skin.

My 5yr old has for the past 4-5 weeks started getting more tummy aches, she has smelly loose poo's at least 2-3 times a week, rest of the time they are normal, sometimes a little sticky (sorry TMI!), she's fine for weight and isn't fatigued. Haven't been able to pin point a trigger food, sometimes she wakes in the night with tummy ache, sometimes wakes in the morning with it, she can also have a couple of days free of it all. Does this sound like coeliac or something else? She has cereal for breakfast everyday and only complains of tummy ache a little later maybe twice a week, it seems quite random in when it happens, same for the poo's.
I have a doctors appointment booked but they can't see her for a month! I was wondering if it could be IBS

On the coeliac fb groups I’ve read about cases of this. Maybe linked to not eating enough gluten prior to the blood test? Coelic uk have a good helpline

I've also remembered that she had very big dark circles under her eyes, and that she smelled like wet dog.

She was four when she got diagnosed.

Oh yes, and the farts were epic. (We just assumed she took after her mother. . .)

Yes its possible, blood tests don't always show it, you can only know for sure with a gastroscopy and biopsies but you might find doctors reluctant to refer for a gastroscopy without a positive blood test.

Thankyou both for the advice. I’ll seek further advice. I initially thought a different GP may be worth seeing but will go via the routes suggested x

Sorry to hear that others are suffering too.