Gluten sensitive - advice please

[poptartpoptart]

Hi, I'm new to the allergies thread as I've just only just discovered that DS's symptoms (very bloated tummy, constipation and tummy aches) could be due to gluten intollerance. DS is 6yo.

I have to do a two week trial cutting out all gluten to see if it makes a difference to his symptoms. I can handle two weeks but....

My fear is that he does turn out to be gluten intollerant - it means a scary change of lifestyle for the whole family.

Can anyone help me with meal ideas and the best branded gluten free foods to buy please?

I'm not much of a cook, but can throw together simple dishes if need be. I'd prefer to buy already gluten free foods so I don't have to worry I'm not doing it right.

Also, what about special occasions? I mean, I can't very well take special food with me wherever he goes - playdates, birthday parties, ad hoc McDonalds trips with friends. I don't want DS to feel that he is 'different' or missing out.

If he is gluten free 95 per cent of the time, would that be enough?

This is all completely new to me so any advice or support gratefully received.

Can I ask who has suggested a 2 week gluten-free trial? If you really think your DS may have a problem with gluten, he should have a blood test to check the likelihood of him being coeliac. If this comes back positive, he will then need a biopsy to confirm and it is very important that he keeps eating gluten until these tests have been done. My DD was diagnosed earlier this year and it is a lifelong condition but it is manageable. However, they do need to try to be 100% gluten-free for the rest of their lives if they're to avoid any long-term problems. Going gluten-free is big lifestyle change and I'm more that happy to share tips etc but I think you need to get some proper medical advice first, it's not something you should be trying to do on your own. If your child is coeliac, he will be referred to a dietician who can give good advice about what foods to eat plus you will get certain foods on prescription eg bread, pasta, flour, pizza bases etc.

Thanks for your message freefrommum. This is the problem I'm having with all this, I keep getting conflicting advice! I asked a locum doctor about this awhile ago (when we were there for an unrelated matter) and she seemed completely unconcerned and said she didn't think DS's symptoms warrented a blood test. So I consulted the great god google, and found a number of discussion threads saying that blood tests for this are pointless (particularly for children)as more often than not you get a false negative result (as apparently a lot of damage has to already have occured to the gut in order for the test to be positive?). Several things I read suggested I do my own test, ie, a trial period of cutting out gluten to see if there is an improvement. But now after reading your post I don't know what to think?! This all seems like a minefield tbh

I agree, it is a minefield! I still think it's worth demanding asking your GP for the blood test. If it comes back positive, well then you'll know but if it comes back negative you could always do the gluten-free trial then because, as you said, there can be false negatives sometimes (not sure they're quite as common as some of the stuff you read made out but I'm no expert). The problem with going gluten-free is that if it makes a real difference, you will find it very hard to reintroduce it for the tests as you will feel responsible for bringing back DS's symptoms (and he might resist reintroduction too). Then you'll never get a proper diagnosis, never be 100% sure and also not get anything on prescription :( It's a difficult one, I admit. We were lucky with DD, her blood test was very conclusive as it came back extremely high, especially given she was only 9, but it was really hard waiting for the biopsy as she had to keep eating gluten which we were 95% certain was making her ill. She begged me to let her go gluten-free during those weeks and it really upset me but it was worth it in the end because it's a lifetime diagnosis and we had to be sure, for her sake. Good luck with whatever you decide because you have to do what you think is best for your family and I know how hard it is when you get so much conflicting advice!