Anyone have a child who has coeliacs?

[youarekidding]

So after the allergies saga, DS is now also having a blood test for coeliacs disease.

Anyone had an otherwise healthy child diagnosed with this? (apart from constipation and soiling he is fine)

His stools stain him and underwear though

Considering all his RAST's were negative despite anaphylatic shock I'm thinking hoping this will too - but for armed is forewarned!!

I have 3!!

DD1 was diagnosed at 2.8 - she was really quite ill, vomiting every 2-3 days, either chronically constipated or suffering dreadful diarrhoea, distended belly (which I now know was due to malnutrition) and very lethargic. She hadn't gained any weight in over a year. Within 2 weeks of diagnosis, she was a changed child, enjoying eating for the first time in her life, normal bowel movements, no vomiting and she gained 1/3 of her body weight in a year.

Although I got my DTs (20 months younger than DD) tested straight after her diagnosis, the tests came back negative. Once DT1 started displaying symptoms - tummy ache, frequent diarrhoea, I had her re-tested and this time it came back positive. DT2 was pretty much asymptomatic, but given that they are identical, she was tested as well and it was positive.

Tbh, I was just relieved that there wasn't something more serious wrong with DD1 and all I had to do was change her diet. Yes it can be a pain - it's difficult to be spontaneous when you're out for example, but gluten free products are so much nicer these days and more and more places cater for people on gluten free diets.

Happy to help if you have any other questions .

Thankyou, glad to know your coping despite 3 children with it, all very young and 2 of them being twins

DS is 7 and pretty asymptomatic IMO. He has had urticaria in the past, allergic reactions, anaphylaxis and does have hayfever (or seems to!) and takes AH during summer months. His stomach is not distended, he is growing normally and is definatly NOT lethargic!

I have been doing the naughty thing and scanning Dr Google! and it's interesting to have found that DS' raised eosinphil count is normal in coeliacs (as with hayfever too) but also the eosinophils can affect the intestines so I may ask about this if the test come back negative.

I had all the symptoms as a child and was tested at 17 and it was negative - even the surgeon was shocked! (I wonder if we both have some kind of intolerance type thing/ disorder and it's hereditory?)

My DP and DS have both tested negative for Coeliac disease, despite having all the classic symptoms and some of the less common ones that I didn't even know about until they developed them! Both are now gluten free and pretty much thriving, but I'm convinced there's a genetic link to their intolerance. Good luck!

There's certainly a familial connection with coeliac disease - DH's nephew also has it...he wasn't diagnosed until he was 12 though, although he had been displaying symptoms since he was a toddler. I'm not sure about a genetic link - the doctors have told me it isn't actually hereditary, but with a coeliac in the family, your chances of also having it are increased.

My DD (2.6) is currently under investigation. We are waiting for the results of her blood tests.

Hers was not picked up as a possiblity as it presents itself as constipation rather than the other.

I have a lactose intolerance and allergy to cheese but apart from that there are no links in our family.

did anyone have negative on blood test but positive on biopsy?

I only had biopsy (14 yrs ago) and was negative. I do habe to limit wheat/dairy though of get reflux/ wind/ vomit etc

DS having blood tests.

Norfolk my DS has constipation - despite high fibre diet and eating loads of fruit/veg and drinking loads too.

My DD was diagnosed as coeliac a year ago aged 9. Until then she was the healthiest child you could wish to meet. Out of the blue she developed tummy pain that gradually got so severe she would be bent double. However, she had no other symptoms (no bowel problems at all) so I was absolutely stunned when a blood test showed positive for coeliac. This was then confirmed by biopsy. So now not only do we have DS with multiple food allergies but also a DD with coeliac disease .
Just wanted to add that false negative blood test results are relatively common (whereas false positives are virtually unheard of) so it might be worth pushing for the biopsy even if the results come back negative. And yes, there is a strong genetic link so the recommendations are for all first line relatives (siblings and parents) of known coeliacs to be tested too.