Went to see the consultant about my boy, I wasn't expecting this...Sob.

[Pancakeflipper]

We had a routine appointment today to see our consultant about our DS2 who is 3yrs old and has a dairy intolerance.

It's usually how are things? Right, will update your GP to continue the Neocate prescription.

Today he wanted to know about re-introducing milk to his diet. I told we had not started that after he had accidently eaten 2 spoons of yoghurt at nursery. Then had a very dodgy bottom for the rest of the day.

The consultant said it was more likely my DS2 wouldn't outgrow the intolerance. We chatted about milk proteins.

Then I mentioned DS2 burps and burps and burps.

And then things all changed... He is scheduling him for an investigation camera operation under general anesthetic and bloods to be taken whilst under.

He's looking more to Celiac and possible bowel problems.

I wasn't expecting that. I have just read some stuff on Celiac disease and I want to cry. I know there's worse stuff. But my poor boy. I hate waiting and wondering.

Waiting is the worst

If he has Coeliac disease, surely it's better to know, and change his diet? Apparently there are a lot of undiagnosed Coeliacs, who go through their whole lives with grumbling health problems that they never find the cause of.

It is better to know, you are right.

Thankfully he's thriving. Grown 7cm since his last visit in the Summer.

And it is the waiting, KatyMac. I am not patient.

I just wasn't expecting to be told it was anything other than dairy intolerance.
I am obviously worried about the general anesthetic.
Get a grip now...

Pancakeflipper I know exactly how you're feeling as we went through this with DD earlier this year. I too shed a few tears at the thought of her having to undergo the anaesthetic etc and also the fact that she might have to be gluten free for the rest of her life but it's all been fine. The worst bit was having to continue to give her gluten for 6 weeks before the gastroscopy when we were 99% certain that it was the cause of all her pain and discomfort (she begged me to let her gluten free straight away and it felt like I was deliberately making her ill). However, it was definitely worth it get the definitive diagnosis as this is a lifetime condition that can cause serious problems in later life if not managed correctly. It also means that she can have some gluten free foods on prescription, advice from the dietician and check ups with the consultant. Yes, watching my little girl undergo an anaesthetic was difficult but it is a quick procedure and we were home in time for tea.
DD has taken really well to the gluten free diet despite the fact that her favourite foods were bread and cakes! We've managed to find good alternatives to just about everything she likes and lots of restaurants are now offering gluten free alternatives (eg Bella Italia, Zizzi's etc). If your DS is coeliac, once he has been on the gluten free diet for a while you will probably find that he will be able to tolerate milk again as this is quite in coeliacs. Let me know if there's anything you want to ask either on here or you can PM me if you'd prefer.

Thank you Freefrommum, your postive attitude lifts my saggy spirit.

If we get back a 'yeah' I will hunt you down and bombard you with questions (especially on eating out - that's hard enough with a dairy-free kid).

Did they do blood tests prior or at the same time as the operation for your daughter?

I think the operation will be early Jan. They could do it the week before Christmas but we don't see the consultant until end of Feb for the results so I didn't see the point of us rearranging the festive bits and pieces for something that can wait until Jan.

Thanks, I have read your post 3x's now and I feel brighter.

Pancakeflipper, when my dd was diagnosed celiac, they told us straight away after doing the endoscopy that they could see that everything was completely flat so you may not have to wait for a result.

If your ds is going to have some issue, the celiac disease is really one of the better issues to have so please don't worry about it. It is nothing like having a serious nut allergy or something like that. It gets easier every year to cope with a gluten free diet as there are so many good gluten free (and dairy free) products around these days. Most restaurants etc. can cope now, and although you would have a few years of sending gluten free sandwiches, cakes and snacks to other children's partys, children who come to your ds's party will not notice that the food is gluten free.

My dd stopped growing completely before she was diagnosed celiac so if your ds is still thriving he's doing pretty well.

Good luck!

They did 2 lots of blood tests prior to the gastroscopy, both of which were pretty conclusive in DD's case (false positives are virtually unheard of but false negatives are quite common). We were advised to start gluten free diet as soon as she'd had the op as they were already 99% certain she was coeliac from her blood test results so we didn't have to wait for the results of the biopsy. I agree with tomkitten that coeliac disease is far easier to deal with than severe allergies and actually has very little impact on DD's day-to-day life (unlike DS who is anaphylactic to milk, wheat, eggs and nuts - this has a huge impact on all our lives, especially his). Feel free to bombard me with questions if DS does get diagnosed. Good luck.

Cheers TomK and FreeFMum. Good to hear that you got feedback straight away and that food isn't going to be the dull boring hell I am imagining!

Thanks. I will no doubt have more questions for you both soon

dont worry,get the test done the sooner you know what it is the better and if it confirms coeliac then you can go forward on a gluten free diet.its no big deal just takes a while to adjust.

barry - I think the tests will have been done by now (old thread) though with our NHS who knows??