Testing for Coeliac Disease

[DashingRedhead]

DD (5.5) is going for her biopsy next week, she has the antibodies. Has anyone out there had a positive blood test and negative biopsy? I'm just wondering how much of a given it is that she has it. The doctor a couple of weeks ago said it is possible that she has the antibodies but isn't actually coeliac.

Glad it all went well Dashing, despite the wait!!!! We are on our second week of our GF diet for the boys and all is going very well so far, I am starting to feel a bit more relaxed about the whole thing even though we haven't had our results yet!

Thanks ffm and keep us posted yellowhouse

Consultant rang today with the results of the biopsies and both boys are not confirmed coeliacs. He said that they found total villi atrophy which means they are severely coeliac. I will have to ask more about what this means, but in essence he tried to reassure me that with a gluten free diet they have started to recover. My DS1 has put on 1kg and grown 2 cm in 2 weeks!!! I am still shocked as despite being so bad he had no symptoms!

I just hope and pray now that they continue to respond to the diet and do well. I feel we are at the beginning of a new journey now. Good luck to all others waiting for results xxx

MEANT to say NOW confirmed coeliacs!!!

Good to know for certain yellowhouse. Now that you know, you really don't have much to worry about. My DH is super severely coeliac - he had severe malnourishment and arrested development before he went gluten free. He was diagnosed at age 2 and that was 40 years ago before most people (including doctors) had even heard of it. You wouldn't think it to look at him now -over 6ft, brainy, etc - but he had years of remedial teaching and special diet to get him back to normal. My MIL still insists that he would have died if it had gone on much longer.

All it means I think is that if they have a gluten accident it will affect them more severely than others who have it more mildly. And things like bone density, which have affected my DH slightly, are better understood and compensated for now.

We think we're already seeing a difference in DD's energy levels on the GF diet. However, we've had some emotional scenes about food she's now not allowed to eat. DS (2.5) made pizza at nursery the other day and she couldn't try it and was devastated. He also doesn't understand why mummy goes into orbit when he tries to put some of his cereal in her bowl. Think we will have to ditch all gluten bearing cereal. DH thinks that the whole family should just get on with it. I'm not entirely convinced as I suspect we'll have to get DS tested at some stage, as a precaution if nothing else. Then we'll have to go back on it etc.

Hi DashingRedhead,

Yes, it's a good idea to get your DS tested. My DS1 (4.5) is coeliac. We have seen symptoms in his little brother (2.10) - he has had a negative blood test but we are going ahead with a biopsy as his symptoms are quite pronounced.

Regardless of biopsy results, we will go gluten-free with him after his biopsy. Have also switched to gluten-free with DD (11mths) - so soon the whole family will be gluten-free.

It's very difficult otherwise with young children - as you say about the cereals etc. And it's just so much faff - if you touch your DS's gluten-containing food, then you need to wash your hands before touching your DD's food - which can happen multiple times in a meal with very young children. And you just have to think all the time about what you're doing, which is awkward.

Our plan with DD is that when she is 5 or 6, we will introduce gluten into her diet for 2-3 months, and then do a blood test. You could consider doing the same with your DS.

Local butcher does GF sausage meat and we've cheated and laid in a stock of frozen pastry. Hey presto, favourite snack of sausage rolls is back on menu!