My son might have coeliacs, advice needed

[Patchybob]

Hi everyone, it's a long story but my soon to be 11 year old ds has been suffering for as long as I can remember with bad tummys, terrible wind, diahorrea, stomach pains etc. I have wondered for a while if it is gluten or lacotse causing the problem and we have for the last 5 days cut both out of his diet.

As a result he is a much happier boy, he is eating like a horse, seems to have more energy and looks less exhausted. He has always had dark rings under his eyes. I took him to the dr today and she was great, she weighed and measured him and was quite concerned as he is on the 1st percentile for his age so quite underweight. He has lost weight recently but has always been small.

Anyway she has referred him to a paediatric gastroenterologist who will do all the tests etc. My worry is him going back on gluten for the 6 weeks needed before either a blood test or biopsy. It seems so cruel :( He is away on a school residential trip next week for the whole week and she has advised me to keep him gf for that and then re introduce it after that in preparation for the tests.

How much do you need to give them when you reintroduce it? Do you need to give them loads for the test to work or can it just be small amounts like a piece of toast a day? He loves his food and has taken to all the new food without complaint.....haven't tried pasta yet!

Any advice would be really welcome. Thanks

Glad your DS is doing better. It is tough to think about reintroducing gluten; could you start by reintroducing the lactose first, to make sure that one isn't causing the problems? I think that your DS will have to eat at least one slice of bread a day, maybe two. Please check with Coeliac Uk - their helpline is free and they can talk to you about the diagnostic process. 0845 305 2060.

My advice if he does have coeliac's is to win the lottery. Everything that lactose/gluten/wheat free is SOOOOOO expensive.

When reintroducing foods u need to take it slow. One food at a time for days or weeks at a time.

Hope everything comes back ok as it is not nice for a child to have to go through that.

I went to a conference on coeliac last week as I have severe gluten intolerance and suffered ill health for 20 years. I believe the consultant there said 4 slices of bread was the recommended intake per day.

If your son is a coeliac or even just gluten intolerant he will be well again after this. The only caveat is that if he comes up 'negative' for coeliac as I did he may stil be gluten intolerant and not many gastro consultants will be willing to keep on testing.

If your son's health has improved so dramatically by excluding gluten I am sure he has an issue even if he is not coeliac.

OP I do feel for you. This is a common problem because too many GPs don't offer testing for coeliac disease until patients have got so desperate that they've tried going gluten free themselves and then they are in the awful position of having to knowlingly make themselves or their children ill again in order to have the tests. Coeliac UK recommends eating gluten in at least 2 meals a day for a minimum of 6 weeks before testing www.coeliac.org.uk/coeliac-disease/how-to-get-diagnosed/are-you-already-avoiding-gluten. You will have to prepared for the fact that your DS will probably feel quite ill during this time and it will be extremely difficult for both of you but it is the only way to get a reliable diagnosis sadly. Good luck.

Hi again, thanks everyone for your replies, they were all really helpful. TooOrangeyforCrows I have started reintroducing lactose today so we will see how his tummy is when he gets home from school.

His school have been very supportive and I am going to send gf food for the packed lunches on his school trip next week. They will sort the evening meals....I am slightly anxious about this but apparently the place they are staying has lots of schools there throughout the year and is well used to this.

He gets back on friday 29th and we will start the gluten then. It fills me with horror as like you said freefrommum I expect he will feel awful. Thanks for the link, very useful.

He starts secondary school in September so there is still time to get it all sorted re diagnosis before he goes. I would like him to start with the school knowing what he can and can't eat.

Thanks again everyone, I will keep you informed!

Hi, well we saw the specialist and were with him just under an hour, he was very thorough. He is going to do blood tests and stool tests. He said that it would be ok to do the blood tests this week, on friday. We had cut gluten out of his diet for 2 weeks and he said that it would be fine to test once he had been back on for a couple of weeks as 2 weeks wouldn't make much difference.
Does that sound right? I thought it had to be 6?

I'm pretty sure Coeliac UK recommend a minimum of 6 weeks but maybe that's only if people have been gluten free for a significant period? Not sure really. My concern would be that you could get a false negative result so I would suggest either waiting for a few more weeks if poss or, if it does come back negative, insisting on a referral to a gastro specialist for more tests anyway.

freefrommum this was a paedictric gastroenterologist who said to go ahead with blood tests on friday so I would hope he know what he is talking about...... I thought it was 6 week too but it must be that it is for people who have been off it for longer.Thanls for your reply.

Ah, I see. Well, as it's gastro specialist then you'd have to assume they know their stuff! Good luck, let us know how you get on.