Oats free from possible contanimation

[pigsinmud]

My ds2 has a wheat intolerance. I have posted on here before about his bloated tummy and horrid poos. Anyway, we have been querying coeliac and have taken him off oats as well as wheat - huge improvement in his poo! Didn't think it could get any better, but it has.

Anyway, we're doing a controlled experiment and want to re-introduce oats to see what happens. However I discovered that most oats are contanimated with wheat. The coeliac society apparently has a list of non-contanimated oats, but won't tell me as I'm not a member . Does anyone know?

After this we're going to try wheat to see what happens.

Also is there any benefit in having an official diagnosis of coeliac? He might not have it at all, but we have been wondering for a while. (is dad and aunt have very dodgy tummies too!

[tkband3]

It's too late to do it now, but I will try to remember to phone coeliac UK for you on Monday...but I have a dreadful memory , so although I will write myself a note, please prod me on Monday!

Official diagnosis of coeliac does have the benefit of being able to get gluten-free food on prescription...as I'm sure you're aware, it can be quite pricey! And because there can be side-effects of coeliac, such as thyroid problems, anaemia and other things if left undiagnosed, I would definitely go for the official diagnosis. The only problem is how you go about it...you first need a blood test, followed by a biopsy to confirm that there is damage to the intestine. However in order to get the correct diagnosis, you would need to put your DS back on a gluten diet for at least 6 weeks prior to the blood test and then continue with that after the results of that until after the biopsy. Altogether, he might have to be back on gluten for 3 months or more. If he has the tests while on a gluten-free diet, then the tests will be negative.

HTH - will come back here on Monday.

[tkband3]

I've just checked the coeliac uk website and I can't find a list of non-contaminated oats either on the main website or on the members pages. I'll phone them on Monday.

[rachaelsara]

I'm a coeliac, but not properly diagnosed because I found out by not eating wheat. The improvement was so dramatic - my skin got better, far less headaches, no more daily trots and bloating that nothing will persuade me to eat wheat again! My sis and nephew are the same, but my sis has been diagnosed and has had all tests etc. Like tkband3 says, there are other things to watch for if you are, so speak to your gp. I can eat any old oats and I'm OK, though oatibix and that sort of well cooked oats have less effect than porridge or flapjack. Good luck. It's a tricky thing to stick to, especially for a child - biscuits are lovely and widely availble! Joining the coeliac society only requires a small donation and you get a book of all you can'can't eat so it's probably worth joining anyway.

[flamingtoaster]

You'll find details of two safe, uncontaminated, brands here:

coeliac.info/suppboard/viewtopic.php?t=2238&highlight=oats

They are Tilquhillie oats and Mornflake.

If you've any further queries you will get a fast reply on the main board it's a coeliac board but manycoeliacs have to be wheatfree as well so there is a lot of collective knowledge about brands:

www.members2.boardhost.com/glutenfree

[flamingtoaster]

To avoid confusing people - my post should have read that many coeliacs have to avoid Codex wheat products (i.e. most of the gluten removed), or those with flavourings or sweeteners processed from wheat (which under Codex standards are considered glutenfree but do contain a small amount of gluten safe for most coeliacs) - all coeliacs obviously have to avoid all ordinary wheat products.

[pigsinmud]

Thank you thank you so much. You are all wonderful and so helpful. I have a feeling that oats affect him as he already looks bloated today - gave him porridge yesterday. Is it true that some coeliacs are affected by oats and others not?

Is my plan ok? We'll put him back on wheat & take him off oats in a few weeks to watch the effects (sounds cruel I know). Then I'll go to GP and ask about blood test - he'll already be having the gluten, so hopefully be ok for the test.

Thanks again!

[pigsinmud]

Thank you thank you so much. You are all wonderful and so helpful. I have a feeling that oats affect him as he already looks bloated today - gave him porridge yesterday. Is it true that some coeliacs are affected by oats and others not?

Is my plan ok? We'll put him back on wheat & take him off oats in a few weeks to watch the effects (sounds cruel I know). Then I'll go to GP and ask about blood test - he'll already be having the gluten, so hopefully be ok for the test.

Thanks again!

[tkband3]

As far as I'm aware, some coeliacs can tolerate oats...my experience is because my eldest daughter is coeliac - she is 4.4 and was diagnosed at 2.10 and we have so far been told to steer clear of oats as well as all the other gluten-containing ingredients. We have been told to keep oats out of her diet until she is a little older and then we might be able to re-introduce them to see if she can tolerate them.

Your plan seems sound to me. It is horrid to feed your child something which you are pretty certain is making them feel rotten (we had to do this for 6 weeks between the blood test and the endoscopy) but once you have the diagnosis and can go gluten-free properly, the change is amazing. My DD1 became a different child within a fortnight.

[flamingtoaster]

schilke ou will find a summary of the current thinking about oats here:

coeliac.info/suppboard/viewtopic.php?t=189&highlight=oats

The current CUK advice is that it is recommended that no more than 50g of oats per day are eaten if you are a fit adult on an established GF diet & the oats are uncontaminated.
You should tell your GP & dietitian if you are a coeliac eating oats.
Coeliac children should not eat oats before taking medical advice.

The advice used to be that to get an accurate blood test you need to have been eating gluten continuously (four slices of bread a day or equivalent) for at least six weeks - but it has recently been increased to three months. However, since your son will not have been off gluten for long maybe the six weeks would be long enough once he is back on a normal gluten containing diet. Pasta is a great way to ingest gluten - it has a high gluten content apparently.

The main advantages of getting a firm diagnosis are (1) you get some glutenfree food on prescription, (2) in some areas you get annual follow-ups (though not in others), (3) you would initially be referred to a dietitian (some are more helpful than others).