Advice on coeliac diagnosis - 10 year old

[MrsKCastle]

I have posted in children's health as well
https://www.mumsnet.com/Talk/childrens_health/3457381-Any-coeliacs-or-HCPs-about here but thought it might be worth asking here as well.

Basically, my 10 year old DD's ttg IgA result just came back as >128 u/ml, with anything >10 being positive. I'm pretty much assuming that she does have coeliac disease, but wondering what will happen next with getting the diagnosis confirmed. Does anyone know if the GP is likely to refer her for.an endoscopy, or will they try to avoid that and just do further bloods? It's an NHS doctor and the next appointment is booked for the start of January.

She has a range of symptoms which seem to me to.be classic coeliac: loose stools, nausea, vomiting, tiredness.

Another question as well, her younger sister (7) hasn't had the loose stools, nausea 3rd bit she has been suffering from constipation and has always been a very skinny child- on the border between underweight/healthy weight on the BMI charts. Obviously if DD1 gets a firm diagnosis, I will get DD2 screened as well, but could celiac be causing the constipation?

My understanding is that there is no firm national policy on this, but in a lot of areas they try to avoid doing endoscopy on children. With that level the elder DD should be referred to an appropriate paediatric gastroenterologist or general paediatrician and that person should decide whether to make the diagnosis on the blood tests or do further investigations.

For the younger, coeliac can cause constipation. It's turning out to be a much more complex thing than originally thought with multiple manifestations. If DD1 is diagnosed then as a first-degree relative the recommendation should be that DD2 is tested (and so should you and her father). Being very skinny could be a family thing what are the rest of the family like? but could also result from malnutrition due to coeliac.

The important thing, though, is not to go GF before you have a firm diagnosis, since without gluten in the diet the symptoms and antibodies gradually go away.

Thanks Talbot that's really helpful. I guess it will take some time to get a confirmed diagnosis if she needs a referral and then further testing. When she went for blood tests at the start of December I was hoping that we'd have some answers by Christmas - completely clueless! And to get us all tested will be even longer.

With both of them being skinny, as you say it could well just be genetics, most of the family on my side are slim. Will just have to wait and see.

My Dd(10) has coeliac disease.
Her blood tests were >21 I think.
I spoke to the consultant and he said that their policy was to preform an endoscopy under ga.

We decided to decline the procedure and just get on with the gluten free diet.

We’ve had no problems with anything. I had to ask for a Drs note for the school dinner supplier and they were quite happy to confirm that Dd has coeliac disease.

We haven’t had younger Dd tested yet as there have been no symptoms.

Also, gf bread is not very nice! Dd will however eat it toasted

My DD was diagnosed last year. I had her tested as I have CD. She had no symptoms at all. The consultant we referred to does not diagnose without an endoscopy. The whole process took forever. Bloods done on October, initial consultant appointment in January, endoscopy in May and finally got the results and went on gluten free diet in the September! (Without a phone call to PALS that would have been December)!

My DD has been fantastic with the diagnosis. Just accepted it. Nursery and school have also been great.

Thanks MummyItsallaboutyou. I really hope it doesn't take as long as that for us- must have been really frustrating.

Hi all,
Just dropping by to let you know that following some feedback from MNers, we've moved this thread from the Allergies and intolerances section to its new home, here in the Autoimmune disease area
Thanks,
M.