Wheat / Gluten / Diary free diet

[LittleMarshmallow]

Does anyone else have a child that follows this kind of diet? Do you get any food on prescription, if you do can you come tell me how you manage to get this and also how you dont end up with food which contains one of the ingredients.

Ta

Hi, my little boy follows a diary, soya, wheat, nut, egg, oat, sesame free diet and do not get anything on perscription. I make a lot of stuff myself so I can control exactly what goes into things. The "free from" section in the supermarket is pretty good and you can get pasta, bread and generally lots of alternatives to wheat and diary.

My daughter follows a dairy and wheat free diet and my son a dairy, wheat and egg free diet. I also do most of the cooking myself there are some great cookery books. We get nothing on prescription.

Our main problems are parties and other people not understanding that 'just a little bit' is not ok.

My problem lies with the fact that ds should have his food on prescription yet everytime I order his food on prescription the GP overrides what I specify and give him the "cheaper" alternative which then contains either Wheat, or Milk both of which he can't have.

Any ideas on how to get them to understand that not all prescribing food stuff can be eaten by everyone who requires a food prescription?

Does DS have a dietician? My GP wrote a letter saying he wouldn't prescribe but the dietician stepped in, pointed out that DS's growth since following wheat/gluten free diet was phenomenal and it really wasn't an option for him to refuse.

It has been prescribed for just over a year and we are up for renewal soon which I dread, however, as you have seen my other posts which indicate DS is still in the same position regarding gluten/wheat as he was a year ago (and will be forever if the coeliac diagnoses is proved at some point with biopsy) I'm hoping the dietician will step in again if necessary.

Good luck!

If you have a coeliac diagnosis then you get certain types of products on prescription - bread or bread mix (so that includes flour, pitta bread, nan bread, dinner rolls etc.), pasta, crackers/savoury biscuits and (for some odd reason) pizza base. But you do need to pay for the prescription - although obviously for children they are free.

So not all things that perhaps you would want but does include a reasonable amount.

HTH

My problem is that the GP will prescribe but the computer system is so antiqued that they just pick what product they think matches what I have asked for and this normally then includes milk.

It was the pharmacy who told me to use pipcodes from the manufactures website to order.

At the moment ds has no dietitian or consultant due to the serious screw up down here when he was transferred from one hospital to another, they have also lost all his notes / medical records relating to anything to do with the consultant

But I have again changed GP in the hope I might find one who understands what it is like to have a child who is seriously ill when the eat the wrong food.

Ds too never grew at all when he ate wheat / gluten but since he has been on this diet he looks like a normal 3.5 yr old, his motor control which is affected has returned to normal and his weight gain has leveled off. Ds used to continually eat when he is on wheat / gluten as his body believes he is being starved so nothing satisfys him he also drinks to excess as well

Sorry should have added that a number of these are dairy free too if you chose well - have a look on the Coeliac UK Website.

Gomez, that is my problem in that I do choose the right ones which are wheat , gluten and dairy free but when the GP comes to write the prescription he chooses the cheaper option or just randomly picks off the list which ones I should get for ds which normally means I waste everyones time going round in circles.

I am not that fussy (honest!) all I want is either bread mix / bread/ pasta / pain biscuits the rest I get myself.

And again - some gluten free food isn't wheat free (Codex standard) but often there is a wheat free version too.

Coeliac UK guide has PIP codes - you can join and get a this great book for free or buy the book for £10 but it includes all great information on suitable products.

Also try goodnessdirect.co.uk for lots of information.

Hopefully haven't forgotten anything else....

Lots of x-post sorry. I have never had any problems getting what I asked as I give a list with with manufacturer and PIP code to GP who then just reproduces what I have asked for. They do sometime just handwrite the script however. Boots have always been good at sourcing for me. Real shame you are finding it such a fight. I misunderstood your first post, sorry.