being ignored by nhs- please help

Savvy_Sue

freebie_junkie wrote:

theres not much difference coz despite a loaf being £1.99 a bag of flour is similar £1.79 plus id have to buy a machine

Yes, but would you get more than one loaf out of each bag of flour, and might you be able to get it to taste better? I don't know, it's just an idea. The alternative is just to stop eating the wheat free alternatives but I don't know what that would leave you - Ryvita instead of bread, rice instead of pasta etc?

Katgoddess

freebie_junkie wrote:

i really miss real patsa, pizza, bread, cakes etc.....

You have probably already done this, but there are loads of recipes out there for cakes and bread that are wheat free.

E.G.

http://www.purr.demon.co.uk/Food/Wheatfree.html

http://www.wheat-free.org/recipes.html

http://www.recipegoldmine.com/glutenfree/glutenfree.html

This one is for flour:

http://www.recipegoldmine.com/glutenfree/gf35.html

Take a look at the old style board for food ideas. If you can get your budget down in other areas maybe you could afford more flour.

Hope you get things sorted.

parmaviolette

Intolerance is definitively different from allergy - an allergic reaction produces very specific symptoms, such as swelling of the throat/head, vomiting, fever etc. and is much more serious than intolerance. Someone who is allergic to peanuts, say, would need emergency medical treatment to save their life if they came into contact with peanuts. Someone who was intolerant to peanuts might have a number of uncomfortable reactions to peanuts, but their life is never endangered by contact with peanuts.

In the view of the NHS, because your choice not to eat wheat is based on preference, rather than necessity, it is not their responsibility to provide you with the diet you require.

I think the NHS position on this issue is unfair: I suffer from many intolerances which are impossible to exclude from my diet, and I'm not even entitled to medicines to relieve the discomfort.

So my suggestions would be these (some have already been suggested...)

try not eating wheat substitutes - just work around it

make your own bread

go back to access to learning fund - if any of your circumstances change, you are entitled to re-apply. they may be willing to pay for the extra cost of food, or they might be willing to buy a breadmaker for you. what it really comes down to is whether they view it is as a preference or necessity - so stress the impact that the discomfort can have on your studying.

freebie_junkie

i dont want to sound minging but it used to take me a full morning 3 or 4 days out of teh week to go to the loo before i stopped eating wheat. the rest of teh time i had cramps, spasms, aches, wind, bloating, sickness etc. etc. so it wasnt much of a life reslly.

how can teh NHS say its a choice?!

MonkeyGirl

Have you been tested by the NHS? I got allergy tested via a health food shop. I went to my Dr and said about it and he said that I can't get it on prescription unless I get tested by the NHS and it showed up. I asked if that was if I turned out to be gluten intolerent as well and I was told no wheat intolrent alone would count as long as the test had been done by the NHS. So I am now waiting for that test to come through.

Other than that all I can really suggest is cutting out the bread as its really hard to make with the wheat / gluten free flour. If you need some recipe ideas or a site where you can buy wheat / gluten free stuff pm me.

Good luck with it and just do the best you can. Sorry I have no other advice right now as I've only been wheat free since December and so far its proving hard going.

MonkeyGirl

freebie_junkie

i was recommended to follow teh wheat free diet by an NHS dietician but she said you could only have teh prescription for coeliac disease (which according to her has identical symptoms, no face swelling etc., its just the most extreme kind of wheat and gluten intolerace- theres no allergic reactions, its all about teh flattening of these sticky-up things in teh gut coz they get all gummed up by gluten, they are betwen half flat and 3/4 flat in intolerant peopel and fully flat in coeliacs. she showed me pics! ew! both kinds of people put themselves at risk from bowel cancer by contiuing to eat wheat so im still confused as to why we are seen as making a 'choice' why would i stop eating pizza and cakes and danish pastries if i didnt have to?! and casue a big scene in restaurants )

ive been what free since dec too, christmas was so hard! thanx for the support love

freebie_junkie

parmaviolette wrote:

Intolerance is definitively different from allergy - an allergic reaction produces very specific symptoms, such as swelling of the throat/head, vomiting, fever etc. and is much more serious than intolerance. Someone who is allergic to peanuts, say, would need emergency medical treatment to save their life if they came into contact with peanuts. Someone who was intolerant to peanuts might have a number of uncomfortable reactions to peanuts, but their life is never endangered by contact with peanuts.

In the view of the NHS, because your choice not to eat wheat is based on preference, rather than necessity, it is not their responsibility to provide you with the diet you require.
.

coeliac disease is very different to an allergy, in my post above i expalin how the dietician explained it to me.

MonkeyGirl

Have you actually been tested by them though or did you just go and present your symptoms and say help like I did lol. If you haven't been tested by them I would try and get one. Also it may depend on your Dr. My Dr is great and bends over backwards to help me with things. After talking to people at NHS direct though they have confirmed what my dr has said and said as long as you get tested by the nhs and it shows an intolernce you should be able to get it. The other thing to do is make sure that you tell your Dr that it causes stomach probs and you feel better for cutting it out that way it is also on your notes.

MonkeyGirl

freebie_junkie

i had teh blood test for coeliac disease of course and after that came back clear i had test for diabetes, ovarian cancer etc. etc. and was finally told i had IBS and to up my wholewhat intake, (my god that made me ill!)

the whole time i was telling them about my mums wheat and dairy intolerances and i really wasnt being listened to, so in teh end i pushed to see a dietician and after 3 months i finally got to see her!

that was in dec and we agreed taht id give not eating wheat a try and my next appointment wirt her is in... march!

what is teh test like, is it a blood test? do you have teh NHS direct number at all? tahnx.

thanx for the info- my non-whaet eating friend!

MonkeyGirl

Can't help on what the test is i'm afraid as haven't had it yet. Here is the NHS direct website it has a phone number or you can email them http://www.nhsdirect.nhs.uk/