Coeliac symptoms in children

[SugarPlumpFairy3]

My dd (7) has had some ongoing tummy troubles for a while now. Coupled with a few other symptoms, our GP has requested blood tests as he suspects a wheat/gluten intolerance or coeliac disease.

Could I ask what other people's symptoms were please? She can explain some of how she's feeling but I guess she's just not old enough to be able to fully explain her symptoms. What should I be looking out for?

Thank you.

I have 2 coeliac DCs, both had very different symptoms.
DS2 was 20 months when he was diagnosed, he developed quite severe symptoms over a few weeks -daily vomiting, extreme fatigue, losing weight, very swollen stomach. I can also see now that there were other symptoms that had been going on for a while- pale, soft poo and very pale complexion.
DS1 was 14 at diagnosis- his main symptom was fatigue (it turned out he had a severe vitamin D deficiency) and he was finding it really hard to concentrate at school. He didn't start getting stomach pains until after his positive blood test (just a couple of weeks before his endoscopy). He also was very pale and the skin on his upper arms used to get very mottled red.
The good news is that once you start the GF diet you start to see immediate improvements.

I am an adult with wheat intolerance, although blood tests several years after I excluded wheat from my diet, did not indicate coeliac disease. I also suffered fatigue, but probably tummy problems were the most obvious symptom. Severe bloating and often pain, with very loose bowel movements. I also noticed hair loss and and itchy skin rash on my legs. Tests when trying to conceive showed a number of deficiencies in minerals.
Excluding wheat seems to have solved almost all these problems! Good luck.

Thank you both.

She's had pale, loose stools for a few years but now that she sorts herself out after going, I don't get to monitor them anymore! She's been complaining of tummy pains after eating (today for example, after breakfast-toast, her sandwiches at lunch and they had chip shop chips at brownies which caused pain after and also caused her to do a 'wet trump' in her pants :(). Her tummy is sometimes bloated. She's been extremely irritable recently. Her hair comes out so easily (I have 2yo twins who have pulled her hair on occasions and I have been shocked at how much comes out). She's pale with dark circles under her eyes. She sometimes complains of a sore mouth.

Does any of that sound familiar to anyone?

She's never tired though! She has boundless energy!

Coeliacs sounds possible with those symptoms. At least you will get an answer soon.

Dd2, who's 9 was diagnosed last year. She had tummy pains after eating and frequent loose stools, much worse when on holiday in France eating lots of croissants! I have positive bloods, waiting on biopsy results, and have tummy pains, diarrhea, bloating and tiredness for the last 25 years!
Sounds like coeliac test would be a good idea for your dd OP. My daughter was never tired at any point.

Those all sound very much like coeliac symptoms (two coeliac DC here).

Make sure you don't change her diet until testing is complete - it's really important as the tests won't work without enough gluten in the diet.

Good news is that if she's coeliac her health will absolutely TRANSFORM once she is (completely) gluten-free, and the transformation will start almost immediately.

Has she had the blood tests yet? i would hurry those up - the faster you get a diagnosis the faster you can get on with treatment. She sounds like she might well be anaemic too - a common side-effect of coeliac, because of the malabsorption issues. I expect your doctor is testing for that as well as the coeliac antibodies - ideally will check vitamin D too.

Thanks all, that's really helpful.

She's having the bloods done a week on Monday so not too long. She actually had bloods done in May as she was pale and under the weather. When I took her about this earlier in the week, the doctor did say that her iron was on the low side so that makes sense now.

Yes, she's still eating her normal diet and I'm noting when she gets tummy pains and what she's eaten. She doesn't always get symptoms after eating wheat etc though.

The doctor did say that the test may come back negative but if symptoms persist, it could still indicate an intolerance? In that case, he said he'd refer her to a paediatrician. Does that sound right?

Glad your doctor is sounding helpful. There are circumstances in which a coeliac test can come back negative even when someone is coeliac - have a look at the Coeliac UK website Diagnosis section for details.

There is also growing evidence of a condition called 'non-coeliac gluten-sensitivity' (NCGS) where people get the same reactions as coeliacs do from gluten but without the autoimmune antibody response.

I would ask to be referred to a paediatric gastroenterologist (this will happen anyway if the test is positive) as well as a paediatrician - it may well be the paed who refers you to the gastro. They are the experts on 'tummy ' problems. Ours was really helpful and agreed that DS2 was either becoming coeliac or has the NCGS - he had all the same symptoms as DS1 but negative bloods/biopsy. With her support, we've gone gluten-free with him as well and all his symptoms have cleared up - we will do a gluten challenge and re-test for coeliac when he's older.

Thanks again.

Can I ask were any of you/your children sick with this? Dd was sick last night. She appears totally fine today, if a little washed out, but it doesn't feel like a bug. Now I think about it, she has had a few bouts of isolated sickness from which she has made a very quick recovery from and no one else in our house caught. Just wondering really.

She's supposed to go for her blood test tomorrow too :(.

Hi there, my DD used to frequently be sick. about an hour after bedtime, one episode not all nigt long,always right as rain by the morning. This was one of the hidden symptoms we put down to 'just a bug' or ' eaten too much/too excited' etc.
She is coeliac.

Thanks phantom. They have been our words exactly :(. She often complains of feeling sick but hardly ever is. It makes me wonder now.

The Dr has just rung with dd's results and everything is clear...

Symptoms are still there intermittently so he's referring her to a paediatrician and I have to keep a food/symptoms diary.

Just to update this...dd was seen by a paediatrician just before Christmas (GP referred her due to ongoing symptoms). To retook her bloods (using a fairly new test I believe).

His secretary has just called as he wants to see dd at clinic on Monday. I'm assuming that something has shown up?

hope the appointment goes well.

Thank you :).

Further update....coeliac screen was negative again but serology (gene test) was positive. Waiting to hear now if they want her to have a biopsy.

it could be your daughter is igA negative which affects the screening, hopefully if they decide to do a biopsy then you will have some more answers soon.

Hi, my DD currently going through testing for coeliacs. When I spoke to Coeliac society helpline they told me that gene test is only inductive gene is present and coeliacs may develop at some point, therefore should not be used in diagnosis without another positive test, either from bloods or biopsy. Apparently 35% of population have gene but not all will develop the disease.

Yes, that makes sense Nameless.

I wonder if it's a coincidence that she has so many of the symptoms?

Hi hope you don't mind me resurrecting this thread!
My ds2 is 6 and has had 3 episodes of one off vomiting in the last 5 months (and one d and v bug too!)
His diet is very carb and therefore gluten heavy and my mum has coeliacs.
I am taking him to the dr tomorrow to ask for advice - should I ask for him to be tested?
(He may already have been as he had bloods done last year but I can't remember what they were...)
Can I ask for the serum test? What is That?

Hello, as luck would have it I was just coming to update this!

Yes, you can ask for a coeliac screen (ttg) if you suspect coeliacs due to family history. Does he have any other symptoms?

As for us, we saw a peads gastro last month who doesn't suspect coeliacs. He does suspect a lactose or fructose intolerance so dd now has 2 appointments for hydrogen breath tests.

Hi
He went a whole year without putting on any weight but that does seem to have rectified
He has quite a limited carb heAvy diet which doesn't help matters

Definitely get him tested Baddz. And, if it's negative, then consider retesting in a couple of years. Under the age of 7, immune systems aren't fully developed which can cause a false negative on the test (not enough antibodies to show up). You can also have him tested for the 'coeliac genes' - if he doesn't have them, you don't need to worry about coeliac, but if he does, then it's something to bear in mind if symptoms stay or develop.

FWIW, my coeliac DC had a very carb-heavy diet before diagnosis. A dietician told me that gluten can have an 'addictive' effect on the brain, so coeliacs who are being damaged by gluten still crave more of it. When we went gluten-free after diagnosis, his eating became much more varied and healthy and he stopped craving carbs.

Just a further update...dd had her hydrogen breath test today for a fructose intolerance which was positive.

Her baseline result was 17 (under 10 is considered normal) and it had risen to 50 within 30 mins.

We've been given a booklet and had a 5 min chat with the lady who carried out the test and that's it! She said we may get a telephone appointment with a dietitian .

I'm relived that we finally have an answer.