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Original poster

Celiac in children - how did you know?

25 replies

MeinKraft · 04/04/2023 09:25

I am starting to wonder about my DS, 6. He complains of stomach aches fairly often as in every day or two. When it's really sore the pain seems to come in waves and then he'll spend a few hours passing wind and running to the toilet. He also has started to get mouth ulcers which is new. He's had two in the last two months though so not a huge amount.

Anyway, has anyone got experience of this and what should I do? I'll ring the doctor on Thursday morning (too late for today and they're closed tomorrow) should I start keeping a food diary or something?

OP posts:

Boomboom22 · 04/04/2023 09:26

Mine threw up every day but still had huge huge poos so clearly wasn't able to process food

Boomboom22 · 04/04/2023 09:27

Gp referred and we were seen within weeks, he had the highest blood score you can get.

Original poster

MeinKraft · 04/04/2023 09:28

That's interesting @Boomboom22 DS doesn't vomit with it so maybe I'm barking up the wrong tree

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TheActualDuck · 04/04/2023 16:41

Same as Boomboom with the vomiting and the blood test score was also extremely high.
Also light coloured, very soft poo which often floated, a pale complexion, distended belly.

Has2sons · 04/04/2023 17:21

My DS was diagnosed after I was (along with DF and DSis!) However, looking back he had a distended tummy and thin limbs which we thought were down to his poor muscle tone (he has mild cerebral palsy too) but was a sign of malnutrition. No tummy troubles.

YouNeverCanTellWithBees · 04/04/2023 18:27

DD had stomach pain that came and went almost every day and a distended tummy. No vomiting.

I knew coeliac was a likely possibility because of family history so I asked GP to test.

missingthewinchesterboys · 04/04/2023 19:30

Stomach aches, toxic farts, terrible mood swings, dry skin in patches, headaches, liquid poo.

Child also had dairy allergy so it's hard to tell what they are reacting to.

missingthewinchesterboys · 04/04/2023 19:33

Sorry posted too soon.
Bloods can test for genetics and Iga but aren't always infallible. We had biopsies twice which didn't show a clear result but because the genetic markers where present they have diagnosed it officially.

Don't cut out gluten until you've seen a specialist as it can make diagnosis really hard.

TheSnowyOwl · 04/04/2023 19:35

Positive blood test. It wasn’t on our radar beforehand. The GP then referred us to a consultant.

helloimnew123 · 04/04/2023 20:11

I think my son might be celiac.

He has a really protruding tummy, bad diarrhoea and bad rashes in his arms & legs.

We have tried to remove gluten from his diet but he still has a big tummy and the rash is still bad.

He has a blood test booked in a few weeks so hopefully that will help clarify

Original poster

MeinKraft · 04/04/2023 20:43

Thanks so much everyone. His tummy can be rounded and hard like a drum sometimes. And he quite often has to run to poo just a few moments after he eats. Something is up I guess. He had the dentist today who recommended we see the GP about the mouth ulcer situation anyway so I guess we'll see.

OP posts:

HappyJoyousFree · 04/04/2023 20:50

helloimnew123 · 04/04/2023 20:11

I think my son might be celiac.

He has a really protruding tummy, bad diarrhoea and bad rashes in his arms & legs.

We have tried to remove gluten from his diet but he still has a big tummy and the rash is still bad.

He has a blood test booked in a few weeks so hopefully that will help clarify

Probably going to say what you already know here so sorry in advance!

For a more accurate coeliac panel blood test the diet needs to contain gluten or you may get false negative. I know it's hard to do if you suspect gluten is the issue but as I remember from when I was diagnosed before biopsy I was told to eat a slice of bread a day. The markers in blood etc aren't present if following a proper gf diet.

Winewednesday · 04/04/2023 21:08

My DS was similar to your DS OP. Just after he turned 10 his bowel movement changed and he couldn't stop going. Had the blood test done and was diagnosed. I had been battling with the GP for years and saw a locum on this particular occasion who had suggested coeliac disease. Most of the symptoms matched and then the blood test confirmed.

Miriam101 · 04/04/2023 21:15

Definitely ask the GP for a bloodtest. The absence of vomiting doesn't mean anything. The symptoms vary hugely from person to person, and it sounds to me like he could well be.

notapizzaeater · 04/04/2023 21:27

My DS looked about 6 months pregnant and was constantly running to the loo and having accidents all the time. His poo smelt really sweet and had its own unique aroma. He was getting mouth ulcers.

helloimnew123 · 04/04/2023 21:45

@HappyJoyousFree

Do you know how far in advance we have to introduce gluten back before his test?
He's only a toddler so it's hard to get him to eat anything I want him to 🙈

elevenplusdilemma · 05/04/2023 07:19

helloimnew123 · 04/04/2023 21:45

@HappyJoyousFree

Do you know how far in advance we have to introduce gluten back before his test?
He's only a toddler so it's hard to get him to eat anything I want him to 🙈

Usually around 6 weeks. It needs to be at least the equivalent of a couple of pieces of toast a day (for an adult) but can be anything gluten-based. Try cakes (?blueberry muffins / banana loaf), pancakes, crumpets, pasta with dinner, breadsticks, biscuits, pizza etc.

Original poster

MeinKraft · 12/04/2023 10:02

Ok so with Easter and everything I haven't called the doctor about this as DS has been well in himself. But he's just gone to the toilet and this oily orange stuff was on the loo roll after he wiped. I am really panicking about this, this isn't an A&E job is it?! I am normally quite calm about health things but I haven't come across this before! Picture attached (sorry!)

OP posts:

Natsku · 12/04/2023 10:06

DD had stomach aches and horrendous farms, she was also a bit on the small side despite being born very big.

1930toEdinburgh · 12/04/2023 10:09

I'd get guidance from 111. With doc strikes A&E isn't going to be the place to be and they can't diagnose long term conditions anyway.

I don't think the oily poo is an emergency but I would get a coeliac test asap. Can you look at private options ?

Original poster

MeinKraft · 12/04/2023 10:15

I would call 111 but I live in Northern Ireland and we don't have that service here. Our GP is very good though and if I ring early enough tomorrow morning they'll see him tomorrow. I'm just a bit worried that I need to get him seen today but he doesn't seem a bit unwell so I'm sure it can wait.

OP posts:

Natsku · 12/04/2023 10:23

I'd see the gp tomorrow unless your ds suddenly gets pains or vomiting or something like that.

MoonSea · 12/04/2023 10:27

MeinKraft · 12/04/2023 10:15

I would phone your GP and explain the situation? Mine would phone back for children if you explain you don't know if it wait...they have emergency appointments

elevenplusdilemma · 12/04/2023 10:55

I don't think it's an emergency if he's well enough in himself but I'd try hard to get a GP appointment ASAP. Did you eat bolognese or similar recently? It could well just be undigested food coming through so tomato / oil based foods would look like that.

Original poster

MeinKraft · 12/04/2023 11:40

Thanks so much everyone. I've decided to take the good advice here and watch and wait for today and ring the GP tomorrow morning. Argh children are such a worry aren't they!

OP posts:

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