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.

I'm also interested in that popelloucla because I believe it is quite rare. We are probably going to go GF immediately and it will be strange if we then find she hasn't got a problem!

We go in at 11 this morning, first slot is 1.30 but not sure whether we'll get it. I'm feeling a lot calmer about it all now. I will just be glad to get it over and done with. DD thinks it's all a great big adventure! I think the novelty of it will wear off once she gets hungry though.

My DGodson gave DD his old Nintendo DS (he's 13 now and doesn't use it anymore) to help her get through the hunger and the boredom, which will really help. Everyone is being so kind to her. And to me.

yellowhouse I think you're probably right and hopefully the gluten challenge will be long enough to get a proper diagnosis but not long enough to reduce him to being really poorly again.

Thanks everyone for your good wishes - I will update later.

Well, that really was a very damp squib. Told to be there at 11am. At 10h40 I'm just looking for a parking space and my mobile rings. They are cancelling the biopsy. The consultant's 3yo DS is ill and actually in the hospital, may need to be transferred to London. The consultant apologises. We are offered 16 or 23 May. I've opted for 23 because I have a work deadline on 16 and they've already been hugely flexible about my leave requirements. It's not an internal deadline, but an external one and I don't want my colleagues to have to pick up on my work at the last minute.

For me, this is not only the disappointment of DD, who was all psyched up and really quite excited, as well as the difficulty of how to handle her feelings after all this extremely careful build-up. It's also having to wait again and key myself up all over again (I suffered from PTSD a few years ago and it's VERY hospital related).

Also I feel like I'm a complete and utter bjitch because I'm finding it so hard to drum up some sympathy for the consultant, whose DS is obviously really poorly.

On top of that, I feel like I'm being incredibly unreasonable, because a girl I was at school with, her son had to have a swelling removed from his brain - mega serious stuff - and his op was cancelled four (yes, 4) times. So why am I complaining? My daughter isn't even seriously ill and this could be the first of many times...

Sorry that your DD's biopsy has been cancelled, Dashing - but I think it's reasonable for you to be miffed - you've obviously psyched yourself up to deal with the hospital appointment and now you're going to have to do it all again.

I bet tomorrow you'll feel more sympathy for the consultant, honestly. :)

Oh how awful - completely understand all the psyching and stress you've gone through and it must be so frustrating to be cancelled at the twelfth hour and you're understandably a bit angry. Totally understandable.

Hopefully it means that next time it'll feel like a real non-event having had a practice run

Thanks both of you. Feeling angry and ashamed of myself doesn't help!

DD will be home from school soon - I took her in just before lunchtime. I thought it was better to get back into the routine as quickly as possible? We came home from hospital, made her a packed lunch (too late for her to order a hot one), changed into uniform, etc. She had a massive weep and cuddle - it's so confusing for her. My DParents, whom we all absolutely adore, are collecting her from school and spending the afternoon here, so that will all help get her back on an even keel. And they are doing pond dipping at school tomorrow, so that will take her mind off things.

Oh no how disappointing for you, I would have felt exactly like you. You can join me in the countdown now, it's the 12th for us but still feels like way to go.

Hope your daughter is enjoying being pampered by the grandparents and forgets about the whole thing for a while... HUGS.

DashingRedhead, sorry you've been bumped, must be awful after all the preparation.

Hi DashingRedHead, how is it going? How is your DD?

We have our biopsy on Saturday for both boys, I am so stressed thinking about it! My DS2 was fine with his gluten diet, his symptoms are steadily returning but as we have done 13 days out of 16 now I am feeling more relaxed and really looking forward to start our gluten free journey.

I will let you know how it's gone xx

Oh no poor you Dashing! I totally understand how you must feel and you have every right to feel angry and upset. The fact that you feel guilty about your feelings shows quite clearly that you are not a b*tch. If you were, then you simply wouldn't care and wouldn't even think that you might be being unreasonable. I say let yourself wallow in a bit of self pity and 'life's so unfair' for a while before picking yourself up, dusting yourself off and preparing yourself and your DD for 23rd May again. You can do it.

yellowhouse very best wishes for tomorrow. At least once that's over you can go back to the GF diet. You'll be so relieved. I bet it's been awful. Let us know how it goes. Are you nervous or just looking forward to it being over and done with?

Thanks ffm I was so put out at the time but have got over it now. Thank you for your kind words - I really felt awful about my own reactions. Heigh ho, now we're just waiting for the 23rd. DD asks occasionally about the GF diet but is much as usual.

Thanks Dashingred, I am very nervous, but also looking forward to starting our new life looking forward rather than to the next test. I am not too anxious about the results as I am pretty certain both boys are coeliac and in the case of my DS2 he is a classic case.

23rd is not too far in the future now, we will be looking back at these days as a distant memory very very soon. I will let you all know how it goes tomorrow. My DH is due in the hospital for 7am and my DS2 is first on the consultant's list, so I should get news pretty quickly in the morning...

Quick update from me....it's 7:38, boys been in since 7am at the hospital but haven't heart anything yet. DS1 woke up this morning with a fever....how unlucky is that? I am not sure whether they will go ahead but DH has taken him anyway. Just waiting for some news now - don't feel too great myself, I think I have a temperature too. GRRRRRRRR

Just a quick update to say that both my boys were out and done about 1 hour ago and they are now fine, just resting and watching Cbeebies in their respective rooms. They were both in theatre for around 30-40 minutes, so DS2 was in at 8am and out at 8:40, then another boy went in then my other DS was in at 9:30ish at our at 10. I am so glad this step is over and done with, thanks for all your support on here xxx

So glad it went well.

Glad it went well. When my ds was done I had to chase the consultant down for the results ....

So chuffed it all went smoothly. I hope you and your DH enjoyed some wine later as a reward for the stress! How did your DD's exam go today?

Thankyou all!!!!
Pelvicfloor, my daughter's dance exam went well! I felt really sorry for her because we had such a trauma the day before plus the weeks preceding her exam that we virtually ignored the whole thing. I tried to look enthusiastic on the day though!!! She was pleased she did it, and I am proud she went ahead despite a terrible cold/cough to boot!

Hi yellowhouse - delighted to hear it all went smoothly in spite of threatened fever. You must be really relieved to be back on track. I rather wish ours was an early one but that's not how it works here.

I've reported the advertiser by the way folks.

Me too dashing! The poster was spamming the allergy board, I saw at least 4 posts!

Psyching ourselves up for tomorrow - here's hoping it isn't another cancellation...

Fingers crossed for you Dashing. Let us know how it goes.

How did it go Dashing? Hope your DD is ok and it is all over for you now xx

Hi everyone, sorry for late update.

Yes it went ahead and DD is fine. To be frank, she rather enjoyed all the attention. The drawback was that she was much later going in than any of us expected, to the point where I was starting to suspect we'd be cancelled again. We were there at 11, she'd last eaten at 7h20, but she didn't go into theatre until 15h45! She did really well and was very patient. She got a bit whiny in the last hour that she was really hungry and tired, but it was nothing in the circumstances, I was so impressed with her.

All the people were absolutely lovely and the surroundings were lovely too - it's a children's hospital so it's completely geared up for them. The nurse was so lovely and put a name tag on her cuddly. The major excitement of the day was that she got to drive herself to theatre on a quadbike. It was all over v quickly, consultant came to see us within half an hour. She said afterwards that even with the magic cream, the cannula was very hurty, but thanks to brilliant diversionary tactics, although she glazed over a bit while he was doing it, she didn't howl or anything. Really impressed with her (although she was back to normal this morning, demanding a plaster and making a fuss about a tiny little cut on her hand...).

She was very dopey for a little while, but the first thing she said was to ask for something to eat! I have never seen her eat so quickly. She was totally starving. She seemed to suddenly snap out of it though after I encouraged her to get up and walk and was dancing around all over the place by the time we left though. The anaesthetist told me that children metabolise the drugs much faster than adults. And when we got home, granny had made her GF lasagne!

We have to call for results in two to three weeks, but have already changed the diet. I asked the consultant the question I opened this post with and he said that it's 90% probability or above that the biopsy will be positive after a positive blood test and with the family history. The interesting thing was that he clearly didn't see a negative biopsy as the end of the road. He seemed prepared to consider how a GF diet affected her, as he asked us if we were planning to go GF immediately and other related questions.

What a relief to get it all over and done with!

Wonderful news, so glad it went well (despite the wait!). Hopefully over the next few weeks you will start to see some positive changes in your DD as the gf diet works its magic.