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Have you benefited from gluten/dairy free diet?  

6 members have voted

  1. 1. Please tick one answer only

    • tried it for 1 year didnt work
      0
    • yes with gluten only
      1
    • yes with dairy only
      0
    • yes with both
      3
    • havent tried it
      1
    • didnt last a year on it
      0
    • havent been on long enough to judge
      1


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I hope this is OK as I have no connection to this company whatsoever, but I thought it might help anyone wanting to follow a GFCF diet to know that 'Dietary Needs Direct' is THE place to get anything unobtainable elsewhere. Expensive but if you don't live in a big city essential for quite a few things. Website:

 

http://www.dietaryneedsdirect.co.uk/

 

Other useful sources are Barbara's Kitchen (flours and baking stuff)

Lock's butchers (Sausages)

 

Links to both from DND site.

 

It took me a while after starting the diet to find these sources so I thought I would post them here and maybe save others the trouble. I have been on the diet for 6 months now and have found it a pain to do but a great help for my stomach problems. I am now considering trying to get my 5 year old (also AS) to follow it - he is a pickier eater however!

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My son has been GF/CF for over 3 years now, the results from Sunderland only showed a problem with dairy, not gluten . He has recently eaten a few things with gluten and shown no reaction, please tell me should i keep up the GF or not, only I read that the body will change to gluten peptides if the casein ones are withheld, I would love to hear your views whatever they are! Many thanks........

 

Perry chie

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My son has been GF/CF for over 3 years now, the results from Sunderland only showed a problem with dairy, not gluten . He has recently eaten a few things with gluten and shown no reaction, please tell me should i keep up the GF or not, only I read that the body will change to gluten peptides if the casein ones are withheld, I would love to hear your views whatever they are! Many thanks........

 

Perry chie

 

In truth, I've no idea.

 

Have you phoned Sunderland and spoken to Paul Shattock or any of the other researchers there? They are surely best placed to advise.

 

Phil

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Hi perry chie -

 

Don't know where you heard that and don't know for sure, but that sounds like absolute twaddle to me...

I have no doubts that GF/DF can help some kids (my own is included in that some, so I'd be foolish not to!), but some of the stuff you hear about the diet(s) just doesn't make sense.

If you think about the more extreme 'traces of' claims that are made and the ever growing list of banned foods, then by definition 'last weeks' diet was likely to have been compromised in some way and if compromised means ineffective (as the traces theories imply) then last weeks perceived results were actually down to the viewer seeing something that they wanted to see rather than what was, IYSWIM.

I think you should 'challenge' the diet over the next month or so and if you see no change then prolong that challenge for another month or so, and so on...

A far more realistic possibility (IMO) is that there could be a compound effect, where proteins aren't eliminated from the body and build up to problematic levels over a period of time. (This happens to my son with dairy... he can handle small amounts ocassionally, but if he has too much too quickly or even small amounts too often I pay for it!) If you've been keeping the diet for 3 years and know the benefits you saw, then you are the best person to make a judgement about whether you're moving backwards, and you can reinstate the diet...

 

 

Hope that helps

 

L&P

 

BD :D

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Thanks for your replies, I can see your point Baddad, and your suggestion sounds very sensible, life would be so much easier if DS was just dairy free, now milk that def. affected him for the better when it was removed from his diet at 2.5 . Knowing how he is he will prob refuse to ever eat ordinary bread and I will have to carry on baking the stuff he is used to!

 

Im sure i read about the body switching from casein to gluten in this book...........

 

http://www.amazon.com/Diet-Intervention-Au...5338&sr=1-4

 

Baddad is your son just dairy free? Did you have the Sunderland testdone for him, and what were the results? You dont have to answer these nosey questions and can tell me to go away if you like! Many thanks

 

Perry chie

Edited to try and make sense of it!

Edited by Perry Chie

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Quickie replies -

 

yes test done at Sunderland...

 

Results - definite spike for gluten... dairy a bit of a grey one

 

BUT:

 

Major, major, major, bowel problems (EVIL constipation and very serious scary vomiting) which weren't going away after over a year of the paeds interventions.

Started dairy free diet and problems disappeared pretty much over night.

After a full six months DF we went GF too, and big changes behaviouraly

so for us -

dairy = bowel/vomit probs and has a little bit of impact on behaviour (confirmed by subsequent diet 'challenges') and he can have small quants of dairy on special ocassions

Gluten = behaviour and (to date) can't be tolerated much at all...

 

He's coming up for secondary transfer next summer, so will probably try challenging again early in the NY, as if he can now handle one or both it'll make life much easier

I'm working on the theory that as many intolerances (and we are talking intolerance rather than allergy) recede a bit with age he may be able to negotiate successfully rather than going for complete avoidance.

I have probs with coffee/seafood/cheese etc, but manage to work around them quite sucessfully for 'treats'

(seafood is the worst - but i figure once in a blue moon it's worth the itching and watery eyes to enjoy a prawn puri of fruits de mer starter!)

 

Hope that helps

 

L&P

 

BD :D

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I'm thinking about going WF and DF again. I know that these things cause my IBS from previous times that I have done it. I never had any problems with my IBS while I was WF/DF and as soon as I bring them back in again the problems come back. The one thing I missed while WF was bread, the alternatives I tried all tasted like chewing on sponge. Anyone know of an alternative that doesn't taste like chewing on sponge? After my first major IBS attack in a while I figured I needed to do something about it as it is really painful. *groans*

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Hi sciencegeek my sister has tried lots of different things.I dont know the names of them though but i do know she still prefers to toast her bread as it improves the taste and texture for her.

good luck

nic

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I find the seeded brown loaf available in various supermarkets quite edible, although I freeze it as soon as I open it, otherwise it goes stale very quickly. It's actually quite pleasant as toast!

 

Have you tried making your own?

 

It's never the same though.

 

Are there other things you can try instead of bread?

 

I think it's fairly easy to make wraps from corn or maize. Rice or (GF) pasta salads. I tend to cook too much and eat smaller portions of hot meals for my lunch - obviously not possible if you are out all day though!

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I've tried making my own in the past. Bit of a disaster area in the kitchen really. I can do basic cooking okish although with a load of accidents, one thing I have never been able to make is anything with any kind of flour. I really don't like touching mixtures with any kind of flour, they make me feel sick. :unsure:

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You shouldn't need to touch it if you mix it with a spoon. You could even wear rubber gloves while you mix it! Maybe the GF would be able to help.

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You shouldn't need to touch it if you mix it with a spoon. You could even wear rubber gloves while you mix it! Maybe the GF would be able to help.

 

I thought you had to knead dough? Gloves would sound like a good idea if I would wear gloves, but don't like rubber gloves as irritates skin and hands get all sweaty and horrible, yuck!

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No, you don't need to knead it. You mix it with a spoon. Well, I mix it with a whisk until I notice it has got so thick that the whisk is bending, and then I switch to a spoon, but the whisk is already bent anyway :rolleyes:

 

If you buy the bread flour, it should have instructions on the packet.

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I made a GF/DF banana bread from scratch (well a special bread flow mix and yeast) and it was lovely! You can now by xanthum? gum in a jar to add to bread/cake mix.

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Well I know that the WF/DF diet has been working in that I was feeling fine, then gave in to a certain chocolate shops really yummy icecream and bam! I'm ill with vomiting and diarrohea about 1hr after eating it. Meh. :sick: Stupid SG :wallbash:

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Has anyone tried gluten free and/or casein free diets for their kids???

Did it work or have any effect at all as I am thinking of trying it but need to know more first.

We're really getting quite desperate and willing to try anything :crying:

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Hi,

 

Looks like lots of people away with the weekend, being Fathers Day. :)

 

I just found this link, I think contains a lot of useful information.

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=3881

 

Also, if you look in the this section of the forum "Diet and Vitamins' I know Baddads posts if you look at his posts, he is an expert on the GF/CF diet. Also Call me Jaded has a lot of good information if you look for her name in those threads too.

 

Good luck,

 

Hope this helps for the moment.

 

Fran :)

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Has anyone tried gluten free and/or casein free diets for their kids???

Did it work or have any effect at all as I am thinking of trying it but need to know more first.

We're really getting quite desperate and willing to try anything :crying:

 

 

Hi Zosmum :)

 

You missed the 'GF' posts by inches! If you go back to the top of this board area, the first one (titled 'diet and vitamins') has around 3 pages on this topic... Well worth having a good trawl through there, but here are a couple of links which touch on 'theory' and getting started:

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=613

 

http://www.asd-forum.org.uk/forum/index.php?showtopic=2059

 

Hope that helps

 

:D

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WOW!!! Even more confused now. To try or not to try now that is a very big question. There seems to be an awful lot of conflicting stories. I think we're gonna have to hav a long think about this one.

:wallbash:

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WOW!!! Even more confused now. To try or not to try now that is a very big question. There seems to be an awful lot of conflicting stories. I think we're gonna have to hav a long think about this one.

:wallbash:

 

For us the "try or not try" was a no-brainer. Unlike many possible "interventions" there doesn't seem to be any real downside to rtying GF/DF diet - except for the inconvenience and additional cost of the food (as GF is more expensive).

 

In a nutshell, though, I'd say:

1. Get the urine test done before you do any dietary changes - Sunderland ARU will then tell you whether they think either GF, DF or both would be beneficial (and, obviously, will tell you if they think you shouldn't try!)

2. If they say to give it a try, then do so - but be prepared for a possible long wait before you see any improvement. DF improvements tend to be seen within a few weeks, GF improvements vary but seem to be in stages - a bit of improvement after a few weeks, then nothing for 6 or more months, but then possibly a big improvement after that.

3. After 6-9 months get another urine test.

 

If, after all that, you don't get on with it, nothing lost, you can go back as you were. If, like us and many, you believe you see improvements (for us it has been a dramatic improvement in communication skills) then you've done the right thing!

 

Phil

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As you all probably know, Sainburys FreeFrom Nuggets/Sausages etc were withdrawn in December as they were found to contain milk protein.

 

Like many of you, we seriously rely on these for our fussy eater, so the last month has been a nightmare!

 

I've been in touch with Sainsburys and they tell me that due to "problems" these are not likely to be back in stock until March.

 

Argh!

 

Does anyone know of other GF nuggets anywhere? Also having major issues trying to find GF breadcrumbs to try and make our own!

 

Phil

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MARCH?!?!? That's ridiculous!

 

I've seen GF breadcrumbs in Tesco. Otherwise you could run some GF bread through a food processor. I wonder if you could make a batter instead???

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Dunno if they come from the same place, but tesco's do FF nuggets/sausages too... there's also a rather nice 'black farmer's' sausage (fnar fnar) available in most shops now that's gf/df, and last time i looked a couple of sainsbury's 'finest' sausages are GF/DF (one was the tolouse sausage, i think, which isn't very nice, but the other one gf/df was...) waitrsoe do a nice FF sausage too, and while a bit more expensive are stocking quite a bit in their FF section these days.

 

Oh - can't remember brand, but Ben tried some GF/DF/Vegan encillada's from sainsbury's t'other day and said they were luvverly... Bit lazy, but a nice lunch/small dinner and not very expensive

 

:D

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Dunno if they come from the same place, but tesco's do FF nuggets/sausages too... there's also a rather nice 'black farmer's' sausage (fnar fnar) available in most shops now that's gf/df, and last time i looked a couple of sainsbury's 'finest' sausages are GF/DF (one was the tolouse sausage, i think, which isn't very nice, but the other one gf/df was...) waitrsoe do a nice FF sausage too, and while a bit more expensive are stocking quite a bit in their FF section these days.

 

Oh - can't remember brand, but Ben tried some GF/DF/Vegan encillada's from sainsbury's t'other day and said they were luvverly... Bit lazy, but a nice lunch/small dinner and not very expensive

 

:D

 

I never seem to be able to find the FF nuggets at Tesco, or the breadcrumbs for that matter, and we do have a couple of big stores nearby.

 

Black Farmer sausages we've tried, but he's pretty rigid about what he eats, and had got in the routine of the Sainsburys FF range and the Black Farmer ones do look very different!

I've seen the Enchildas you refer to - mand indeed they are quite tasty, but C wouldn't even look at something like that (he's only 5 so they are outside what he would consider "normal"!)

 

Phil

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Stunned to see in tesco's today that they've got a 'FF Pancake mix' on the shelf... :rolleyes:

Yep, that'll be powdered egg and GF flour and they've already added sugar too. all you have to do is add 'milk' (rice or soya for DF)...

Boy, think of the time you'll save not having to beat the egg into the flour yourself... and it only costs about twenty times as much - a bargain, already oi vay!

 

So all you toss-ers out there - pans and lemon juice at the ready!

 

L&P

 

BD :D

Edited by baddad

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As you all probably know, Sainburys FreeFrom Nuggets/Sausages etc were withdrawn in December as they were found to contain milk protein.

 

Like many of you, we seriously rely on these for our fussy eater, so the last month has been a nightmare!

 

I've been in touch with Sainsburys and they tell me that due to "problems" these are not likely to be back in stock until March.

 

Argh!

 

Does anyone know of other GF nuggets anywhere? Also having major issues trying to find GF breadcrumbs to try and make our own!

 

Phil

Yes TESCO has glutenfree breadcrumbs but I use batter /egg,flour and beer for frying fish nice with chicken too.First meat goes in flour then to dense batter and in hot oil fried.

If you want really crispy use potatoe flour but take care to fry it a bit slowly as it is getting crispy and the meat might still not done.

I always do a big amount and once fried and cooled I put it into freezer bags and I use for 3-4 other occations too.

Beer will not contain alcohol as it evaporates when frying.

You can make batter with soyamilk too.

At least you see what your son is eating and he might prefer pure meat from sg ground.

 

If in hurry you can just put spices and flour on any meat and fry it.

 

If bredcrumb is available then put any kind meatpieces flour,egg then breadcrumb and fry /put salt in eggs/

Good luck.

If anyone needs other simple spongecake or muffin or apple pie pastry recepee do write.Simple and goes again into freezer.

Good cakes with or without fillings and a lot cheaper and no additives.

Good luck

Edith :

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I must admit I didn't know that.

 

It's the nuggets that are the biggest problem though!

 

Phil

Phil just buy chicken pieces and /flour,eggs,breadcrums or use flour and batter/ and save it fried in freezer if there are no nuggets.

Edith

Do you use rice noodles from Chinese shops?Lots of different pastaa made with rice flour or bean flour ,different shapes too and cheaper than Sainsbury`s or Tescos.

I do the same big amount with bolognese sauce and put to small containers and ready 3-4 portions for his pasta.

If I can help do write.

My son is on dairy and glutenfree since the age of 12 and he is 23 so there is practice here but when I started it was hell as I spent so much time and lots of things were not available.

Edith

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Yes TESCO has glutenfree breadcrumbs but I use batter /egg,flour and beer for frying fish nice with chicken too.First meat goes in flour then to dense batter and in hot oil fried.

If you want really crispy use potatoe flour but take care to fry it a bit slowly as it is getting crispy and the meat might still not done.

I always do a big amount and once fried and cooled I put it into freezer bags and I use for 3-4 other occations too.

Beer will not contain alcohol as it evaporates when frying.

You can make batter with soyamilk too.

At least you see what your son is eating and he might prefer pure meat from sg ground.

 

If in hurry you can just put spices and flour on any meat and fry it.

 

If bredcrumb is available then put any kind meatpieces flour,egg then breadcrumb and fry /put salt in eggs/

Good luck.

If anyone needs other simple spongecake or muffin or apple pie pastry recepee do write.Simple and goes again into freezer.

Good cakes with or without fillings and a lot cheaper and no additives.

Good luck

Edith :

If you have a reliable bucher you can ask for a bigger amount of gluten,additive,milk free sausage or burgers too.He will make that for you at least our does.

Edith

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Yes TESCO has glutenfree breadcrumbs but I use batter /egg,flour and beer for frying fish nice with chicken too.Edith :

 

Hi edith/All. Don't forget to use Gluten Free Beer! That said, at a couple of quid per half pint that makes the batter rather expensive :(

 

 

:D

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Hello

 

ive been on the diet sometime now but for some reason i cannot get my free from foods at tescos prescribed for me.

was wondering how i could convince the doctor this would be a good idea?

 

Alexis

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Invest in a bread maker. You put all the ingredients in, set the programme and wait for the bread to be mixed, proved and then baked. No baking experience necessary.

i did and i got some hot flour mix coming out.

 

Alexis

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hello

 

Was wondering how many people on here have tried the gluten and dairy free diet for a year and what their responses to it were?

if you attempted the diet for less than a year and it didnt work please let me know how long you were off gluten (recommended 8 months at least) and milk (recommended 4 days at least).

 

If your kid/you got worse on the diet, did you try supplements as well?

 

Alexis

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i dont understand why people wish to spend money on unnecessary testing? Wouldnt trying the diet be the best test of all?

Edited by trekster

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My son has been GF/CF for over 3 years now, the results from Sunderland only showed a problem with dairy, not gluten . He has recently eaten a few things with gluten and shown no reaction, please tell me should i keep up the GF or not, only I read that the body will change to gluten peptides if the casein ones are withheld, I would love to hear your views whatever they are! Many thanks........

 

Perry chie

 

There is truth in this, if you take out one addiction then another milder addiction will become worse. This only applies to those addicted to gluten and casein proteins in the 1st place though.

 

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Thanks for your replies, I can see your point Baddad, and your suggestion sounds very sensible, life would be so much easier if DS was just dairy free, now milk that def. affected him for the better when it was removed from his diet at 2.5 . Knowing how he is he will prob refuse to ever eat ordinary bread and I will have to carry on baking the stuff he is used to!

 

Im sure i read about the body switching from casein to gluten in this book...........

 

http://www.amazon.com/Diet-Intervention-Au...5338&sr=1-4

 

Baddad is your son just dairy free? Did you have the Sunderland testdone for him, and what were the results? You dont have to answer these nosey questions and can tell me to go away if you like! Many thanks

 

Perry chie

Edited to try and make sense of it!

 

Yes that's the book i used as well and i think i found similar evidence in other gf/cf books for autism.

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