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Twila Marie

Soy!?!?!

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Besides the fact that any kind of unfermented soy is toxic and very unhealthy, a lot of people with celiac disease can't tolerate it at all. Lots of us get pretty much the same symptoms from soy as from gluten.

Both soy and dairy have also shown to cause villi damage.

I guess you'll have to find another milk substitute. Two better ones than soy milk are rice milk (not Rice Dream, it has barley malt) or almond milk. I use rice milk with my cereal and like it fine.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Today I ate fine...but my tummy is horrible!!! The only thing I can think is soy milk, since I had it with my breakfast...help!?

I am in the early days of healing, and have also been having problems with soy (and dairy, but for some reason soy seems to be the main offender!) How long have you been gluten free? I have been told that it is very common to find your body reacts to various other foods in the first few months of recovery. Try cutting out soy for now, and reintroducing it once some time has passed...:-)

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Guest Lore
I am in the early days of healing, and have also been having problems with soy (and dairy, but for some reason soy seems to be the main offender!) How long have you been gluten free? I have been told that it is very common to find your body reacts to various other foods in the first few months of recovery. Try cutting out soy for now, and reintroducing it once some time has passed...:-)

What about Lactaid milk?? Does that hurt your tummy?

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First cold pressed unsweetened coconut milk is great too and great for the digestion and candida.

You can find it in the Asain isle of the grocery store.

I use a Rice Dream just fine. Not sure about all the details right now as I just used one and need to get another. It was the organic one found in the grocery isle. No problems for me at all. I guess not all of them have gluten. I chose this one because it was gluten free, organic and had the least ingredients of any and was sugar free. Well, yes, rice is sugar, but you know what I mean.

I miss my soymilk. Gave it up because of the soy and carrageenan.

I haven't done almond milk yet because I can't find any without carrageenan.

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I use a Rice Dream just fine. Not sure about all the details right now as I just used one and need to get another. It was the organic one found in the grocery isle. No problems for me at all. I guess not all of them have gluten. I chose this one because it was gluten free, organic and had the least ingredients of any and was sugar free. Well, yes, rice is sugar, but you know what I mean.

What you really mean is, you use a rice milk, but not the Rice Dream brand. I use the President's Choice Organic rice milk, which not only tastes better than Rice Dream, but is cheaper as well. And it doesn't have gluten.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Nope..I meant Rice Dream..just got back from the store and it's organic Rice Dream. Says Gluten Free on the back. I understand all the rules about labeling and laws and what requires 'Gluten Free' and some people saying that Rice Dream has gluten in it because they are allowed to say it doesn't because of the small amount.

I guess it bothers some and not others. This one doesn't bother me at all.

I read on a couple other forums where some others said the organic Rice Dream was fine for them too.

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Nope..I meant Rice Dream..just got back from the store and it's organic Rice Dream. Says Gluten Free on the back. I understand all the rules about labeling and laws and what requires 'Gluten Free' and some people saying that Rice Dream has gluten in it because they are allowed to say it doesn't because of the small amount.

I guess it bothers some and not others. This one doesn't bother me at all.

I read on a couple other forums where some others said the organic Rice Dream was fine for them too.

Okay, I misunderstood you then. Yes, it has barley malt. They are now declaring it gluten-free, because the gluten is below 20ppm. But obviously, it really isn't 100% gluten-free.

I just found here today that in Europe (where the 20ppm originated) they would not call it gluten-free, but would rather say, "Suitable for a gluten-free diet". If they say 'Gluten Free', it is 100% gluten-free.

I wished they would do the same thing in America, it would make things easier. Here in Canada the Rice Dream doesn't say it is gluten-free, because here they can't say that if it isn't 100% gluten-free.

Personally, because there are several kinds of rice milk, I would choose one that is 100% gluten-free above one that isn't. Because who knows, over time it may do damage, even if you don't have obvious reactions. But of course, it is a matter of individual choice.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Okay, I misunderstood you then. Yes, it has barley malt. They are now declaring it gluten-free, because the gluten is below 20ppm. But obviously, it really isn't 100% gluten-free.

I just found here today that in Europe (where the 20ppm originated) they would not call it gluten-free, but would rather say, "Suitable for a gluten-free diet". If they say 'Gluten Free', it is 100% gluten-free.

I wished they would do the same thing in America, it would make things easier. Here in Canada the Rice Dream doesn't say it is gluten-free, because here they can't say that if it isn't 100% gluten-free.

Personally, because there are several kinds of rice milk, I would choose one that is 100% gluten-free above one that isn't. Because who knows, over time it may do damage, even if you don't have obvious reactions. But of course, it is a matter of individual choice.

Unless this happened and i didn't notice then I don't think its so clear.

So far as I know the Codex didn't change and the definition in the Codex is pretty confusing.

(Don't shoot the messenger here..I agree this is crazy)

Rice Milk can't be called gluten free UNLESS they add gluten. Because ... it can only be called gluten-free IF it has gluten removed or an ingredient with gluten removed (below 20ppm) added!!!

It can be called naturally gluten free ... or they can add barley malt <20ppm and then call it gluten-free.

Please don't shoot me.... this is how its written not what I agree with.

The bottom line problem is ... its technically illegal (as the UK signs up to the Codex which is voluntary) to label as gluten-free but they can use 'naturally free of gluten' or 'suitable for coeliacs' which have no 'legal definition'.

On the other hand if the food itself is naturally gluten (like flour) then they can say gluten-free if its 100% gluten-free.

Because so many 'complex' products are neither 'usually' with gluten or without (say mustard) these all fall into a black hole.

Because of this the 'suitable for coeliacs' label has arisen but it similarly means nothing. That is some manufacturers use it as a catch-all and others probably make every effort and then some. Those who I trust actually use wheat free and barley free etc. on the labels!!

At the end of the day quite a few manufacturers are actually making lots of efforts but its almost an uphill battle for them because of the way the codex is written. Several supermarket chains flouted the law for several years by labelling gluten-free on own-brands when it was actually gluten-free..(hence technically illegal to label gluten-free).. so I actually was quite pleased with this (its not like they were really going to get in trouble but all the same I appreciated the effort)

I hope I'm wrong and this has changed but .... with Coeliac UK interfering and lobbying it seems unlikely.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Gluten 15,

I'd watch it with the Rice Dream if I were you. I used it for a few months when I first went gluten-free and thought I was just fine, too. Then my reactions started returning and it took me awhile to find out that that .002% (or whatever it is) of barley was getting to me after all. (I didn't know it was in there at the time.) Personally, I wouldn't touch any product deliberately with any gluten. My recent Frito poisoning being a perfect example. I think it can catch up with you. Just a thought...

lisa

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Ursa, it can also vary a little from one European country to another. Here in Holland I mostly see "gluten free" versus "naturally gluten free". "Suitable for coeliacs" seems to be a UK phenomenon. :)

All in all I'm actually quite ok with the European labelling laws. It takes some research in the beginning, but that's the case in other parts of the world as well I'd say. In any case, I haven't been glutened for a while now.

I do wonder how the people are going to be doing in twenty years time who are eating "gluten free" wheat starch regularly. I don't know if there are any really long term studies about the effects of that yet.

Pauliina

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Ursa, it can also vary a little from one European country to another. Here in Holland I mostly see "gluten free" versus "naturally gluten free". "Suitable for coeliacs" seems to be a UK phenomenon. :)

All in all I'm actually quite ok with the European labelling laws. It takes some research in the beginning, but that's the case in other parts of the world as well I'd say. In any case, I haven't been glutened for a while now.

I do wonder how the people are going to be doing in twenty years time who are eating "gluten free" wheat starch regularly. I don't know if there are any really long term studies about the effects of that yet.

Pauliina

I'm not sure that's so likely, as I heard that it's much more expensive for the manufacturer to process out the gluten fot gluten-free flour. When I was in the UK a few months back it seemed to me that all of the gluten-free bread in the shops (that I saw) was wheat free also and that only prescription gluten-free bread was wheat derived. However since my mother and I are now having problems with the Tapioca flour in everything gluten-free I am not sure. :( I have found only one Tapioca free brand here in the US, 'Food for life'.

Soy: I had problems with the Almond milk also, I thought it was the soy leicethin and vit E from soy, although I also wonder if Carageenan is becoming difficult to digest also. <_< Some brands of Almond milk I noticed do use barley enzymes to process and are not gluten-free.

All in all I have switched to Hempmilk, (the plain pink carton not Hemp Bliss- don't like the flavor so much) it's a great creamy flavor but it does have a tendency to sink and look gross in tea/coffee but worth stiring smooth again because it tastes so good, has Omega 3, 6's and is thicker than rice milk, so good for mashed potatoes. Haven't tried it in sauces yet.

But I am now confused about the labelling post. I'm going to have to read it again!


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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Gluten 15,

I'd watch it with the Rice Dream if I were you. I used it for a few months when I first went gluten-free and thought I was just fine, too. Then my reactions started returning and it took me awhile to find out that that .002% (or whatever it is) of barley was getting to me after all. (I didn't know it was in there at the time.) Personally, I wouldn't touch any product deliberately with any gluten. My recent Frito poisoning being a perfect example. I think it can catch up with you. Just a thought...

lisa

I had similar experiences with "low-gluten" ... it's almost so subtle but seems to build up.

I do wonder how the people are going to be doing in twenty years time who are eating "gluten free" wheat starch regularly. I don't know if there are any really long term studies about the effects of that yet.

Me too. I know it affects me but how will it affect me long term??

I'm not sure that's so likely, as I heard that it's much more expensive for the manufacturer to process out the gluten fot gluten-free flour. When I was in the UK a few months back it seemed to me that all of the gluten-free bread in the shops (that I saw) was wheat free also and that only prescription gluten-free bread was wheat derived.

This is largely because of the weird 'definition' in the CODEX.

The weird part is that naturally gluten free isn't allowed to be called gluten free. The rest of the complexity seems to come from this sticking point....

I think the original idea was that things labelled gluten-free are basically specifically manufactured as gluten free but because as you say its next to impossible to economically get the gluten under 20ppm they left in the 20 and 200 ppm limits.

Of course time has moved on.... most of us prefer wheat FREE/Gluten FREE .. but we are still left with some old definition ...

The original 200ppm limit was also just arbitrary. It happened to be the limit at the time for the cheapest testing that could be used for screening not based on health issues.

The food industry then made studies on the effect of this limit ... so that is subtly different to determining a 'harmless' limit.

One common thing is regardless of toxin it seems limits keep going down and down as more is understood.

Back when I was young asbestos (for example) was considered harmless then slightly toxic and carcinogenic and now its pretty much zero tolerance. I don't expect the effect of gluten is going to be any different to this model and as more is understood and known the 'safe' limits will be moved down....

Meanwhile ....


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Well then this brings up a few questions. I have seen quite a few post about suggesting using rice milk instead of milk for those trying to avoid dairy. In most those post the suggestion is not to use Rice Dream..but I haven't seen much then in what brand you do use? AND does it have carrageenan in it..which I also must avoid. And..is it sugar free? How do you know for sure it's gluten free? Just by reading the label? Because the Rice Dream I chose..the ingreadients looked fine, said gluten free, and I have noticed anything right away..but I do understnad the long term affect.

Most of these products have carrageenan in them..except for the organic Rice Dream. I have been wanting to try almond milk..but the only one's I can find contain carrageenan and sugar.

So..how did so many find out that the Rice Dream that said 'gluten free' and the ingreadients were fine weren't? Started having reactions and wanted to nail it down..thought maybe that was the problem and called the company and found out about that little bit and the laws?

How do we know anything that says it's gluten free and the ingreadients look fine don't contain that little bit that's allowed by law?

If some people would please post what brands of almond milk and rice milk that they use..in the USA..and I will take it from there as far as searching out other ingredients I don't want.

Thanks for all the input.

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...If some people would please post what brands of almond milk and rice milk that they use..in the USA..and I will take it from there as far as searching out other ingredients I don't want.

Thanks for all the input.

You may not like my answer, but here it goes...:)

I do not trust processed food anymore. We kept getting glutened by everything that wasn't supposed to have gluten in it. We are sensitive enough that we cannot tolerate any level of cross contamination - even just from sharing lines. We kept cutting out more and more processed items until we finally decided to do the Specific Carbohydrate Diet for healing. The only processed foods we eat right now are coconut oil, canned pineapple, apple cider, Welch's all natural grape juice, and almond butter. I have confirmed with the companies that my almond butter and coconut oil are safe. I have not confirmed the other items, but they have not caused us a problem (that I am currently aware of.)

So, I would advise you to make your own almond milk. Then you know exactly what is in your milk. We tried to use a processed almond milk on Christmas Eve for an eggnog substitute. It was delicious and then made us sick as dogs for the next week. I never get GI symptoms from a glutening, but I was vomiting the whole next day.

Good luck,

Cathy

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I can't have soy milk, rice milk or almond milk. Apparently I am sensitive to carrageenan. Which makes sense to me as I have always felt awful after eating cheap commercial icecream and sour cream. Thankfully the expensive icecream (at least I think I'm thankful lol) works for me and I have found a sourcream without carrageenan.

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Crap! What is carageenan? I just noticed it's in my Pacific Foods rice milk. :huh:


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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Carrageenanis a thinkening agent, a seaweed derivative, which may be harmful, especially to the intestinal tract.

There's still a ton of opinion on this out there. I made my choice to not use anything more that has it in in. Many natural toothepaste do and things like almond milk and soy milk.

Since I am on a very strict diet and elimination of things..I decided to not drink soy milk anymore anyway..little did I know though that my Silk Soymilk had this in it and I was drinking that stuff daily thinking it was good for me.

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Carrageenan is a thinkening agent, a seaweed derivative, which may be harmful, especially to the intestinal tract.

There's still a ton of opinion on this out there. I made my choice to not use anything more that has it in in. Many natural toothepaste do and things like almond milk and soy milk.

Since I am on a very strict diet and elimination of things..I decided to not drink soy milk anymore anyway..little did I know though that my Silk Soymilk had this in it and I was drinking that stuff daily thinking it was good for me.

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Oh thanks for clearing that up for me Gluten15 B)

Are you feeling better since going off it?


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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Well then this brings up a few questions. I have seen quite a few post about suggesting using rice milk instead of milk for those trying to avoid dairy. In most those post the suggestion is not to use Rice Dream..but I haven't seen much then in what brand you do use? AND does it have carrageenan in it..which I also must avoid. And..is it sugar free? How do you know for sure it's gluten free? Just by reading the label? Because the Rice Dream I chose..the ingreadients looked fine, said gluten free, and I have noticed anything right away..but I do understnad the long term affect.

Most of these products have carrageenan in them..except for the organic Rice Dream. I have been wanting to try almond milk..but the only one's I can find contain carrageenan and sugar.

So..how did so many find out that the Rice Dream that said 'gluten free' and the ingreadients were fine weren't? Started having reactions and wanted to nail it down..thought maybe that was the problem and called the company and found out about that little bit and the laws?

How do we know anything that says it's gluten free and the ingreadients look fine don't contain that little bit that's allowed by law?

If some people would please post what brands of almond milk and rice milk that they use..in the USA..and I will take it from there as far as searching out other ingredients I don't want.

Thanks for all the input.

All in all I have switched to Hempmilk, (the plain pink carton not Hemp Bliss- don't like the flavor so much) it's a great creamy flavor but it does have a tendency to sink and look gross in tea/coffee but worth stiring smooth again because it tastes so good, has Omega 3, 6's and is thicker than rice milk, so good for mashed potatoes. Haven't tried it in sauces yet.

There is a brand of rice milk in Wholefoods which is everything free and it's also quite fibrous but I don't remember the name, something Heavenly or ethereal sounding. Not good in tea but ok otherwise.


gluten free 11/1/07

CF, SF, 02/08

posative Enterolab results 3/11/08

HLA-DQB1, Allele 0303

HLA-DQB1, Allele 0609

Serologic equivalent: HLA-DQ 3,1 (subtype 9,6)

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