Mumsnet Talk

Im really not sure what I'm doing...do I need to bring anything with me?
We have started to slowly cut out gluten from his diet,should I make sure he has gluten in his system before the appointment? Or can I keep cutting down on it?
I am wary of cutting it out compleatley without a diagnoses,but he suffers so badly....I know it will affect him when he eats it,but I don't want to turn up at the appointment,for them to say 'but he looks fine!'
I don't know if gluten needs to be in his system if them to run tests etc...

Basically I'm compleatley lost,help!

It's really important that your DS continues to have gluten in his diet until all the tests have been carried out. Believe me, I know how difficult this is when you're pretty sure of the cause of your child's pain and suffering but the tests will not be accurate if he has already cut out gluten. My DD was diagnosed with coeliac disease last year and her initial blood test results were so high that the consultant was 99% certain but the 'gold standard' test for coeliac is gastroscopy and biopsy so she had to continue to eat gluten for another 6 weeks until she could have the test done in hospital under anaesthetic. Coeliac disease is a life-long condition so it's definitely worth getting a definitive diagnosis plus in most local health authorities it's the only way to get gluten free food on prescription (though for how much longer I'm not sure given the cut backs).

Thankyou.
i guess we will have to keep the gluten in his diet for a little longer then.

I don't have any further advice from what freefrommum says, but absolutely agree to continue with the gluten, hard as it is.

Quite shocked whoever made this appointment didn't tell you that, actually.

My DS obligingly stunk out the waiting room with a nappy full of intolerance that helped our cause!

Hmm,well,I just sort of marched into the GP surgery,said I thought he had a gluten allergy,that he was losing weight and possibly failing to thrive (he doesn't talk yet,may be unrelated of course) he is in pain 90% of the time,wakes up in agony with tummy pains,nasty rash on his face etc....
And that I wanted a referral....
the GP just said,"oh,okay" and the next week we got a letter with an appointment at the Big Hospitals paediatric department!
So I really am clueless!
I certainly expected a longer process...

I did tell the GP we had gotten good results from limiting gluten and she said,"oh yes,okay"

Clearly she has no idea what she is talking about then.

Smacka

Umm,can I ask,what exactly I should expect at the appointment?
What if any tests will be done?

What sort of timescale should I expect the results in?

My DS had a blood test and detailed case history was taken. A stool sample was also taken from the offending nappy.

DD had blood tests and case history too. Results from blood test were pretty quick, within a week I think. Had to wait 6-8 weeks for biopsy though.

Thankyou.

Slightly worried about continuing to feed him gluten though...he had some pasta last night,he only slept for 4hrs before waking up in agony with stomach cramps,he barely slept after that.and now he has his horrible rash back it looks so sore.

Ah bless him - it'll soon be over.

Poor him and poor you I know how difficult it is, I really do but it will be worth it in the end. Can I ask what the rash looks like? Is it like little blisters? Only asking because there is a specific skin condition related to coeliac disease called dermatitis herpetiformis. Might be worth taking some photos when rash is at it's worst to show specialist just in case it's cleared up on the day (as these things are prone to do - sod's law!).

Okay,thankyou for that, will take pictures.

It doesn't come up as blisters,no...the first sign of it looks like he's been slapped
then you notice little red pimples round the edge of the redness then the redness raises and becomes rough,almost scaley.
It looks so sore,but he never scratches it,so not itchey,unlike the other rash he gets on his neck,back,legs and arms,which look more like his sisters unexplained rash,red,raised pimples,that ARE itchy. the GP's think it's childhood excema,and will go away on its own.

It took 16 weeks form the first appointment to the biopsy for our DS and that was way too long. If they'd told us in the first place how long it would take, we could have taken him off it for 10 weeks and then reintroduced it. My understanding is that it needs to be for 6-8 weeks. If by any chance you get a date further away than that, you might want to take it out of his diet for a bit first. Hopefully your hospital will be more organised than our local and regional hospitals trying (and failing) to communicate with each other.

Thankyou bethy that is very good to know,if it's going to take a long time we certainly will take it out of his diet for a bit.
It is so awful at the moment.
He looks so I'll.

Ill not I'll!

So,his appointment is tommorow,
he is utterly utterly miserable,
has hardly slept all week,rashes all over him (including blisters now),hard tummy,wind,soft pale (increadably smelly)poo,will not stop BFing,but won't stay still,it's driving me nuts but I can't say no,he hardly eats anything else.
He just crys and wants to be held all the time.

I don't know what I'll do if we have to keep gluten in his diet any longer.
We are all exhausted from lack of sleep.
How do you get through this bit?

And I have started to notice,my DD (3yrs) has a lot of the same symptoms,just much milder...would they test her at the same time if she's there?