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Allergies and intolerances

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Original poster

coeliac diagnosis in children - advice appreciated!

8 replies

SalVolatile · 27/01/2009 19:11

DD4 aged 6 is going to GP tomorrow. We have a family history of coeliac disease amongst other things and she has been failing to thrive for a number of months and has all the main symptoms. She is absolutely terrified of needles and I am really concerned that if the GP insists on a blood test that she will not allow one to be done. Does anyone have any experience o asking a GP to follow a 'treat as.......' approach with a young child? Thanks

OP posts:

bramblebooks · 27/01/2009 19:16

I don't but have been through all the testing with my children. It's not easy, even with emla and bribery.

Please, please also bear in mind that even without a coeliac diagnosis (ours came back clear but with all the symptoms of failure to thrive) that there could still be gluten intolerance, and even type 1 diabetes (which my son presented with in the acute phase a few months later). T1 diabetes is closely linked to coeliac - my DH is coeliac and this is what we thought was happening to ds2, he had all the symptoms. It wasn't, and they were unable to pick up diabetes. Over the summer he started to have bad stomach aches, was still failing to thrive, listless, whiny. Then in the autumn he suddenly started to drink loads and wet the bed - I knew what it was immediately and he was diagnosed on arrival to hospital. He was 7 then.

I hope it's not, but best to be informed. Good luck.

Original poster

SalVolatile · 27/01/2009 19:31

That's interesting, my mum is coeliac, my dad and one of my brothers are both type 1 diabetic, and my sister has thyroid disease (hashimoto's)

OP posts:

bramblebooks · 28/01/2009 16:20

crikey sal, that is interesting. Sadly, t1 diabetes is clustered with coeliac, thyroid problems and addisons disease - all because they are autoimmune problems. Quite a few of the families on my diabetes support network (children with diabetes uk) have a child with coeliac and/or diabetes.

My dr has also told me that coeliac parents can have children who get lymphoma. Strewth. Will we ever be able to get to sleep, eh? !!

Onwards and upwards though.

loobeylou · 29/01/2009 14:32

Sal, my 3 Dc have ALL had several blood tests and still are, as DD1 is coeliac - they ALWAYS give a cream that numbs the whole area first, so it really does NOT hurt. Of course, they still might panic and my 8 yr old really played up yelling and kicking and refusing to let them near her last time.....bribery is good!

(our GP surgery policy is that blood tests on kids is a specialist thing and we are always sent to the hosp childrens ward where they are used to it and very patient!)

glutenfreebabe · 29/01/2009 22:55

When I took my 3 boys for their blood tests it was so funny, my eldest was about 16 at the time and the younger 2 11 and 8. The elder 2 were making so much fuss and had to lie down afterwards so the youngest just sat in the chair and said ok get on with it! Just as well they won't have to have babies!!

lapanza · 18/02/2009 16:04

Just to bump this post up....
Having read what you have to say about blood tests for coeliacs.. I am a coeliac and want to get our 17 month tested as she is incredibly cranky and has the most horrendous nappies!
I have been told by our paediatrician here in Spain that they would do a blood test (4 testtubes...) and if it came back positive they do the biopsy. Is this the same in teh UK? If CD can be diagnosed with a blood test then why is it necessary to have the biopsy also - seems like unnecessary suffering to me.

loobeylou · 18/02/2009 18:30

the blood test only screens for a likelihood of coeliac disease, and false results are quite common, both false positive and false negatives, especially in children. Biopsy is the only definite diagnosis, where they actually look for flattening of the villi in the gut

Tiggiwinkle · 18/02/2009 18:38

I would strongly advise you to go ahead with the blood test. I was worried about it when my DS5 had to have it, but really it was absolutely fine (and he has Asperger's and is very anxious about all things medical too).

The endoscopy was also no problem-the staff in hospital were really great and he sailed through it.

He does have coeliacs-as does my DS1. It is really important to get a definitive diagnosis as they need careful follow-up because of the associated problems (diabetes, as has been said, plus anaemia, osteoporosis, and many other things.)

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