Please can you help me word my questions right - paed appt on Wednesday

[wangle99]

DS's long awaited Paediatrician appt is coming up on Wednesday. He has done 4 weeks wheat/gluten free and was a changed child. He's been back on wheat/gluten for 5 weeks and has diarrhoea (keeps not making it to the loo), is horrid, distended stomach and smells worse than my dog!

Should I take the paediatrician's lead and see what they say? Or should I ask for specific tests to be done?

My own GP laughed at me and told me that there was nothing wrong, there IS and I feel this is my final chance to prove it!

I have logged everything DS has eaten and everything that has come out the other end for 7 weeks and will be taking this.

Any useful advice for this appt would be gratefully received..

Thank you

Wangle99 - not sure of your history but I was in this position a few years ago with a 3 year old - She wasn't growing either which helped me get taken seriously - but I was told over and over again that she didn't 'look' like a coeliac.
When she got her paed appointment the paed
also said she didn't think dd was coeliac but agreed to do a blood test just to put my mind at rest. Had a very surprised sounding letter a couple of weeks later saying the test was positive.

It sounds like you have given this loads of thought already. The main thing is to go prepared as you have done by writing everything down. Also a potted history would help you-dates when probs started etc. If they dont offer a blood test I would insist one one-adopt the 'to rule it out' approach and point out it will save time in long run as you will only be asking for one in 12 months time. If all else fails may be worth asking if you could pay privately for the test-this will show you are serious-you may not actually want to do this but you can ask!. I dont eat wheat-isnt the difference wehn you give it up REMARKABLE. Good luck

My son had similar probs for about yr and half, did all tests at hosp including for wheat and all fine. I then saw advert for allegy testing at health shop and wheat showed up. Since taking him off wheat no more symptoms about 2 months later had review appt at hosp and told doc she seemed relly interested (although gp told me those tests rubbish) and she said blood test not always accurate. She said 2 possibilies he either wheat intolerant in which case need to keep him off wheat for at least 3 months when I reintroduce it prob b fine or he coeliac in which will have symptoms again when reintroduce, but only definite way to test for it is bowel biospy, can test through blood but not always shows up. Fortunely when I reintroduced he fine, he now been back on wheat for about 6 months with no probs.yr son might need to be off wheat for longer.
p.s if he is coeliac u can get wheat free food on prescription but need something of doc

definitely ask about a blood test www.allergy-clinic.co.uk/coeliac_disease.htm but if the paediatrician doesn't think it appropriate listen to their reasons. If they do one they should also test for IgA deficiency as the test can give false negative results in a few cases so you could ask if they also do that.

If the test is negative it could still be wheat intolerance but you might need to do some trial and error to see if its wheat or gluten.

Hope you get some help.

Thank you for your advice, interesting to hear orangehead that your son is now ok on wheat. I wonder why that happens sometimes.

DS is quite excited to see the 'special doctor' he usually has a doctor phobia but is quite looking forward to this appt!!!

I'll let you know how we get on..