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Still Feeling Sick


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#16 Maria B.

 
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Posted 09 June 2014 - 05:19 PM

There are no reputable Celiac centers or associations that I  am aware of that say that   Celiacs cannot have soy.  If you have a legitimate source, please post it.  

 

Like I said before, there are people, Celiac or not Celiac, who have issues with soy.  

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone.  I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation).  Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.


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#17 kareng

 
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Posted 09 June 2014 - 05:28 PM

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone. I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation). Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

Many Celiacs don't use dairy because the damaged villi are the part that makes the enzyme to digest lactose.

Please provide reliable, scientific sources for these theories of yours. Manufacturers aren't having to take gluten-free off soy products that are gluten-free. We just want to help you and give you accurate info. You might want to read the University of Chicago Celiac Center website.
http://www.curecelia...guide/treatment


Just want to add - your liver doesn't care about gluten. It doesn't get gluten. The celiac reaction is in the small intestine. Please read some reliable info. Maybe look at a good explanation of how the digestive system works. I think someone is giving you some odd info.

Edited by kareng, 09 June 2014 - 06:19 PM.

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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#18 notme!

 
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Posted 09 June 2014 - 07:44 PM

I got this information online, however, I will be meeting with a Celiac Nutritionist in 2 weeks, I should get better information then and I'll share it with everyone.  I have noticed that since removing soy from my diet, I haven't had any stomach issues (but still have joint and inflammation).  Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy.

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

lolz !  who perpetuates this crap ?  sorry, maria, you are being duped :(  soy and gluten are completely different things and cows are not giving soy milk from eating soybeans.....

 

as karen said, if you want to make statements like this, you must provide legitimate scientific documentation.  

 

i have issues (separate from my celiac) with soy and guess what they are:  INFLAMMATION especially joint inflammation. maybe you have a separate issue with soy, but it has nothing to do with gluten.  (soy lecithin will still cause a person with soy issues to have inflammation)  also, celiac might *affect* your liver (because celiac is systemic), but it's not where it manifests.  it's possible to have many intolerances.  please consult with legitimate sources of information.  good luck! :)  


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have a nice day :)

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#19 Maria B.

 
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Posted 09 June 2014 - 08:39 PM

Many Celiacs don't use dairy because the damaged villi are the part that makes the enzyme to digest lactose.

Please provide reliable, scientific sources for these theories of yours. Manufacturers aren't having to take gluten-free off soy products that are gluten-free. We just want to help you and give you accurate info. You might want to read the University of Chicago Celiac Center website.
http://www.curecelia...guide/treatment


Just want to add - your liver doesn't care about gluten. It doesn't get gluten. The celiac reaction is in the small intestine. Please read some reliable info. Maybe look at a good explanation of how the digestive system works. I think someone is giving you some odd info.

This is all new to me, I will get the right information from my Nutritionist when I see her in 2 weeks.  I came to this site to get information, the information that I just posted was something that I read from someone on this site as well.  Everyone has their own opinion and everyone has very different symptoms.  Some have problems with Lactose and some with Soy, but we are all fighting the same illness "Celiac".  I will be more than happy to share my findings after meeting with my Celiac Nutritionist, it took some time to find the right person b/c not all Nutritionist or Dietitians understand Celiac. 


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#20 kareng

 
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Posted 10 June 2014 - 04:41 AM

This is all new to me, I will get the right information from my Nutritionist when I see her in 2 weeks.  I came to this site to get information, the information that I just posted was something that I read from someone on this site as well.  Everyone has their own opinion and everyone has very different symptoms.  Some have problems with Lactose and some with Soy, but we are all fighting the same illness "Celiac".  I will be more than happy to share my findings after meeting with my Celiac Nutritionist, it took some time to find the right person b/c not all Nutritionist or Dietitians understand Celiac. 

 

 

What I am trying to say is - don't go by "opinions" go by some scientific/medical data.  Hopefully, you have found someone who can help you, not just try to sell you supplements.


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#21 IrishHeart

 
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Posted 10 June 2014 - 04:54 AM

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

http://www.celiac.co...have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay? ;)

 

Best wishes to you. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 dilettantesteph

 
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Posted 10 June 2014 - 05:24 AM

Soy can be contaminated with gluten.  http://www.glutenfre...en-free-grains/

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 


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#23 IrishHeart

 
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Posted 10 June 2014 - 05:29 AM

That study also states;

 

"sampling was not large enough to make any assessment on the overall percentage of contaminated product.

Sampling also was not large enough to make any inferences on the specific grains, flours, and seeds more or less likely to be contaminated."

 

 

 

Note: bold lettering is theirs, not mine


Edited by IrishHeart, 10 June 2014 - 05:29 AM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 Maria B.

 
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Posted 11 June 2014 - 03:53 AM

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

http://www.celiac.co...have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay? ;)

 

Best wishes to you. 

I didn't think about it, but Yes....I will try eating a soy bean on its own to see my reaction.  Thanks for the info, I've never used a Forum or Blog before, so reading everyone's post can become very overwhelming.  Some people seem as though they know what they're talking about, but then you get a response from someone else saying"No..thats not right". 


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#25 Maria B.

 
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Posted 11 June 2014 - 03:59 AM

Soy can be contaminated with gluten.  http://www.glutenfre...en-free-grains/

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 

Thanks, Yes...I see now that I really need to check my resources.  I do have to say though, that I removed "some" soy from my daily intake and have become "regular" I do not feel the discomfort of constipation.  So I may be one of those Celiac's that can not have soy ;/ It's become a process of elimination to find whats best for me. 


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#26 Maria B.

 
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Posted 11 June 2014 - 04:00 AM

Soy can be contaminated with gluten.  http://www.glutenfre...en-free-grains/

That doesn't mean that all soy is contaminated or that celiacs shouldn't eat soy.

There is still a lot of unknowns with celiac disease and a lot of speculation online and in the offices of various health professionals.  You need to look carefully at the source of your information.  You need to see if there is any scientific evidence behind what someone is proposing.  It is easy to make mistakes when you look at what might have made you sick in a day's food consumption.

All the speculation makes navigating this condition more difficult. 

I agree....It's very overwhelming! 


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#27 IrishHeart

 
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Posted 11 June 2014 - 04:15 AM

I didn't think about it, but Yes....I will try eating a soy bean on its own to see my reaction.  Thanks for the info, I've never used a Forum or Blog before, so reading everyone's post can become very overwhelming.  Some people seem as though they know what they're talking about, but then you get a response from someone else saying"No..thats not right". 

 

I know exactly what you mean. When I first came on here 3.5 years ago, i was not sure who to listen to or what to trust. Forums can be tricky and everyone has an "opinion"  ^_^

Plus, when you are new at this, it is overwhelming and it seems like EVERYTHING is making you feel sick.

I quickly learned who was giving me good info and who was a fear-monger. You'll catch on! 

 

I suggest this:

Read current threads.

Look at someone's profile and see if they are still active and if they have a number of active posts,

Watch if they direct you to celiac research centers or offer sound advice, and if, in general what they say makes sense.

Blogs are not always full of sound advice, trust me. 

"I heard that" is not a valid source of information.

 

I suggest you read this book: Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. 

Good luck on your soybean trial. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 Maria B.

 
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Posted 11 June 2014 - 05:26 AM

Maria,

 

You mentioned that 

" Yesterday I had gluten-free protein bar and started feeling sick to my stomach almost immediately, when I read the label it said it contained soy."

 

Soy may very well be causing you some symptoms or it is any number of other ingredients in a packaged product. The only way to tell is to just eat

soy--all by itself. Eat a big hunk of tofu or some soybeans. PLAIN...and see what happens.

 

As for this claim:

 

It contains prolamine which your liver will think is gluten because it's extremely similar. You may have heard you can't have CASEIN (a protein in cow's milk) and that is for the same reason - there is prolamine in it and that is probably because the cows are fed soy. Manufactuers will soon be required to remove "gluten free" from the label if the product contains soy! Please, please, from a celiac, take me seriously and remove soy from your diet. Soy LECITHIN is ok, that's just an emulsifier.

 

 

well, I did a quick search on here and that statement came from someone who was quoting her "PhD' doctor --i.e. her psychologist perhaps--

and the thread is a giant train wreck of speculation and misinformation from 2007--which is why it was locked down. Hardly any of those people are even contributing members anymore.

 

That poster gave other nuggets of misinformation like this one:

 

 my doctor misunderstood my question and the soy thing only applies to a specific gene of celiac (i think mine is 0305)

 

 

There is no "0305 celiac gene" and there aren't any specific food lists for 'celiac genes" anyway. She claims the doctor said certain celiacs will react to soy like it is gluten because of the "gene they carry". Hogwash.

 

I can assure you, this is absolutely unverified nonsense and wild speculation. ( some of us long time members  would like to see threads like this one you are quoting from deleted permanently)

 

 

http://www.celiac.co...have-soy/page-7

 

If you want valid information read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This is a public forum and we have all seen some pretty wild stuff posted here. We try to make sure new people get valid information. You will have to choose wisely when reading things, okay? ;)

 

Best wishes to you. 

Thanks! 


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#29 dilettantesteph

 
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Posted 11 June 2014 - 07:03 AM

 

Plus, when you are new at this, it is overwhelming and it seems like EVERYTHING is making you feel sick.

 

That's the big problem.  Additionally, some are more sensitive than others.  When someone says how safe something is for them, it might not be for you.  The unknowns make it really easy develop misunderstandings.  It will take some time, but you will get there.  Remember to reassess your understanding as time goes on.  After you have healed you may find that you can eat things that you thought you couldn't.


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