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Labeled gluten-free But Really Not


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#1 big red

 
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Posted 21 November 2011 - 06:22 AM

I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!
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#2 T.H.

 
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Posted 21 November 2011 - 11:38 AM

Oh so sorry you got sick on that!

I'm assuming you live in the USA, yes? One of the major issues here is that there is not yet regulation of gluten-free foods, so which ingredients can be used, and how often a product must be tested, if at all, are not standardized.

Another issue is that one of the tests to determine the concentration level of gluten, which some companies use, does a poor job of accurately detecting the barley gluten, specifically, so foods that have utilized barley or have barley derivatives may actually have above the 20 ppm of gluten that most companies aim for, due to the barley.

Re: the rice milk. The good news is, you may actually not be super-sensitive, although if you were having trouble with it, you likely do fall on the sensitive side. :) There are a number of celiacs who have had trouble with a rice milk that was processed with barley. A number of celiacs have also reported issues with Amy's products. And due to the lack of regulation in the USA at the moment, it's not unheard of to get other 'gluten free' foods that have over 20 ppm of gluten, or a few batches that are over 20 ppm, because the company isn't testing their product.

For this reason, a number of celiacs drop processed food for a the first few weeks-months of healing. They eat whole meat (not luncheon meats), fruits, and veggies. Sticking to certified gluten free grains like Lundberg rice. Avoiding nuts, dried fruits, and legumes that have been processed in a facility with wheat. We were just talking about sunmaid raisins here a few days ago, for example, and they seem to have a dedicated facility for just raisins. Then they slowly add back in a product, one every few days, or once a week, and see how they are feeling on it.

When we were in the same position as you are, I went to whole foods, and for my kids we ended up hunting down products that had stricter testing standards and lower gluten concentration standards.

These guys (http://www.gfco.org/ ) will certify products, and not only are the foods with this symbol on the box supposed to have less than 10 ppm of gluten, their processing, ingredient sourcing, and cross contamination prevention practices have all had to meet certain standards. They also do not allow derivatives of wheat, rye, regular oats, or barley to be used as ingredients or in the production of the food.

The website above also has a list of all companies that are certified by them, so you can more easily find them. :-)

CSA ( http://www.csaceliacs.info/index.jsp ) also certifies products and they will have the seal on their product. The products with this certification must be below 5 ppm, and there are certain standards and testing protocols they must follow as well. However, CSA certified products are not allow to use any oats, even gluten-free ones.

For both of these, the last time I checked, the testing isn't for every batch, but the frequency is based on the estimated safety of their sourcing and processing practices.

Another Two companies that have lower ppm standards, but aren't certified, are Pamela's brand mixes and cookies (every batch tested, must be below 5 ppm) and Ener-G (periodic testing, must be below 5 ppm).


If you see a gluten free product that is labeled as such, it's possible to find out if they test, but kind of a pain in the behind, so going with certified products can be easier at first (if more expensive). If you wish to contact companies yourself to determine which ones test, here's the questions I ask through email or a phone conversation.

1. Is your product gluten free? Sometimes, the answer to this is 'not any longer,' so it's worth checking, just in case.
2. Is your product made in a gluten free facility or gluten free line? This is not required for safe products for many celiacs, but it does let you at least estimate the level of risk, especially if a product is not being tested.
3. Is your product tested for gluten levels? If so, how frequently? And what is the allowed ppm level of gluten in your product? (or what is the ppm detection level of the tests used?)

The last question is one that I would get ALL the information on. It's been surprising how many company reps tell me that they test for gluten, but when they go to check on what ppm is allowed, find out that they don't test after all. :rolleyes: So the last question is, in some ways, really just a check to make sure they knew what they were talking about.
  • 2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#3 Gemini

 
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Posted 21 November 2011 - 12:12 PM

I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!



Any product that contains barley will cause a reaction in any Celiac...except for those who are asymptomatic in general. It would be the equivalent of ingesting wheat. We all have made these mistakes in the beginning and it's part of the learning process. However, try not to become terrified of food because there are many gluten-free products which are gluten-free and will not cause you to become sick. I generally do not eat from shared facilities, unless their cleaning practices are solid. Amy's has presented problems for me so I cannot eat their products...many Celiacs have had a problem with Amy's.

You can safely eat certified gluten-free products and many which are not certified but follow good practices for preventing cc. It's a learning process and you'll get to know over time what you can and cannot tolerate. But do not be afraid to try stuff or your diet will become extremely limited. Those are the unhappy Celiacs. Why limit your diet when you may not have to? Most of what is out there is safe for the vast majority of Celiacs. Also keep in mind that a reaction may not always be gluten related.

If you are looking for a good gluten-free bread, Canyon bread is certified and very, very good. Google the name and get the details if you want more information. I am pretty sensitive and tolerate this bread well. Hang in there...it gets much easier the longer you are gluten-free!
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#4 Juliebove

 
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Posted 21 November 2011 - 04:38 PM

I have seen several items that say gluten-free on the label but then say processed on equipment that makes things containing wheat. I can't remember the brands though. We have learned to read the entire label.
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#5 padma

 
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Posted 21 November 2011 - 05:19 PM

I was dx with celiac disease about 8 months ago. I started a strict gluten-free diet and within a month started to feel much better. Recently I had a relapse of symptoms only to finally discover that the Rice Milk I was consumming, for the about a month, was processed using Barley. This Rice Milk was labeled gluten-free so I did not think to ck it when trying to figure out what was causing my recurrance of symtoms. Apparently, I am a supersensitive Celiac and I am now terrifed of these "gluten-free" products. I understand that gluten-free means less than 20ppm but no gluten is safe. Does anyone know of any other "gluten-free" products that are potentially dangerous? Thanks!


As you read through this section you will find lots of references to product names that should help. You will also find the sources of where gluten "hides", like maltodextrin. Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients. Chips and candy (chocolate) fall in this category. By reading, you'll find the brands people tolerate.

I have quit eating most gluten free brands because I can not afford to be so ill by doing lots of experimenting.

I have realized lately that even if a company is trying to be gluten free, they might not be getting gluten free raw ingredients. There was an article in Cornucopia that told about a Canadian milling company that just lost its organic status. The person who told me about it has a gluten free bakery whose products I react to. See: http://www.cornucopi...ency/#more-4348

In a July 27, 2011 notice, the office said Jirah Milling and Sales Inc., of Ormstown, was no longer authorized to market organic products or use the Canada Organic logo (the logo that would now be recognized by the U.S. and the EU).


In another Texas case:

Last year, a Texas businessman, Basilio Coronado, was convicted of fraudulently selling conventional grains and beans as organic produce. He was sentenced to 24 months in prison and ordered to pay almost $524,000 in restitution.

With people like this in the industry there are going to be mistakes made and gluten included.

I have learned how to make raw desserts out of the most delicious ingredients... no flours needed. I bought the Cafe Gratitude cook book and their dessert cook book. The coconut cream pie is to die for! You'll never miss the other desserts once you try their recipes.
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#6 lovegrov

 
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Posted 21 November 2011 - 05:40 PM

This one incident does not necessarily mean you are super sensitive.

richard
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#7 Lisa

 
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Posted 21 November 2011 - 05:50 PM

As you read through this section you will find lots of references to product names that should help. You will also find the sources of where gluten "hides", like maltodextrin. Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients. Chips and candy (chocolate) fall in this category. By reading, you'll find the brands people tolerate.


Maltodextrin is not a gluten concern in the US and Canada. And wheat flour on conveyor belts is an exaggerated non-necessary concern.

There is plenty items of concern out there, but these two are not. :)

Your best source of information is to contact the company directly, and with hopes, you will find an informed customer relations representative.

There is a listing on reliable companies who will clearly list all forms of gluten...must go find. :)

I don't believe that companies are out there to mess with us. After six years, I have seen tremendous success in product offerings. I'm happy. You just need to be an informed consumer. Hidden gluten doesn't hide as well as it did several years ago. That's a good thing.
  • -1
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#8 psawyer

 
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Posted 21 November 2011 - 05:59 PM

Some processing plants use wheat flour on their conveyor belts and don't have to list it in the ingredients.

Please name one. Just one--and provide the evidence supporting the allegation. I have been on the diet for over eleven years, and have yet to learn of a single case where this is actually true.

Oh, and don't confuse organic with gluten-free. They really have very little in common.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#9 T.H.

 
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Posted 21 November 2011 - 09:57 PM

I just wanted to point out that Padma didn't say that a product didn't have to list wheat on the label, just that the wheat didn't have to be listed as an ingredient. I'd assume a product with wheat used in production would need a 'contains wheat' statement on the label near the ingredient list.
  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#10 big red

 
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Posted 22 November 2011 - 04:58 AM

Oh so sorry you got sick on that!

I'm assuming you live in the USA, yes? One of the major issues here is that there is not yet regulation of gluten-free foods, so which ingredients can be used, and how often a product must be tested, if at all, are not standardized.

Another issue is that one of the tests to determine the concentration level of gluten, which some companies use, does a poor job of accurately detecting the barley gluten, specifically, so foods that have utilized barley or have barley derivatives may actually have above the 20 ppm of gluten that most companies aim for, due to the barley.

Re: the rice milk. The good news is, you may actually not be super-sensitive, although if you were having trouble with it, you likely do fall on the sensitive side. :) There are a number of celiacs who have had trouble with a rice milk that was processed with barley. A number of celiacs have also reported issues with Amy's products. And due to the lack of regulation in the USA at the moment, it's not unheard of to get other 'gluten free' foods that have over 20 ppm of gluten, or a few batches that are over 20 ppm, because the company isn't testing their product.

For this reason, a number of celiacs drop processed food for a the first few weeks-months of healing. They eat whole meat (not luncheon meats), fruits, and veggies. Sticking to certified gluten free grains like Lundberg rice. Avoiding nuts, dried fruits, and legumes that have been processed in a facility with wheat. We were just talking about sunmaid raisins here a few days ago, for example, and they seem to have a dedicated facility for just raisins. Then they slowly add back in a product, one every few days, or once a week, and see how they are feeling on it.

When we were in the same position as you are, I went to whole foods, and for my kids we ended up hunting down products that had stricter testing standards and lower gluten concentration standards.

These guys (http://www.gfco.org/ ) will certify products, and not only are the foods with this symbol on the box supposed to have less than 10 ppm of gluten, their processing, ingredient sourcing, and cross contamination prevention practices have all had to meet certain standards. They also do not allow derivatives of wheat, rye, regular oats, or barley to be used as ingredients or in the production of the food.

The website above also has a list of all companies that are certified by them, so you can more easily find them. :-)

CSA ( http://www.csaceliacs.info/index.jsp ) also certifies products and they will have the seal on their product. The products with this certification must be below 5 ppm, and there are certain standards and testing protocols they must follow as well. However, CSA certified products are not allow to use any oats, even gluten-free ones.

For both of these, the last time I checked, the testing isn't for every batch, but the frequency is based on the estimated safety of their sourcing and processing practices.

Another Two companies that have lower ppm standards, but aren't certified, are Pamela's brand mixes and cookies (every batch tested, must be below 5 ppm) and Ener-G (periodic testing, must be below 5 ppm).


If you see a gluten free product that is labeled as such, it's possible to find out if they test, but kind of a pain in the behind, so going with certified products can be easier at first (if more expensive). If you wish to contact companies yourself to determine which ones test, here's the questions I ask through email or a phone conversation.

1. Is your product gluten free? Sometimes, the answer to this is 'not any longer,' so it's worth checking, just in case.
2. Is your product made in a gluten free facility or gluten free line? This is not required for safe products for many celiacs, but it does let you at least estimate the level of risk, especially if a product is not being tested.
3. Is your product tested for gluten levels? If so, how frequently? And what is the allowed ppm level of gluten in your product? (or what is the ppm detection level of the tests used?)

The last question is one that I would get ALL the information on. It's been surprising how many company reps tell me that they test for gluten, but when they go to check on what ppm is allowed, find out that they don't test after all. :rolleyes: So the last question is, in some ways, really just a check to make sure they knew what they were talking about.

Thank you so much for taking the time to explain so much to me! Yes, I do live in the US. Love the links and you have opened my eyes to the testing world and how to find safer products!
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#11 psawyer

 
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Posted 22 November 2011 - 05:35 AM

I just wanted to point out that Padma didn't say that a product didn't have to list wheat flour on the label, just that the wheat didn't have to be listed as an ingredient. I'd assume a product with wheat used in production would need a 'contains wheat' statement on the label near the ingredient list.

So, Shauna, I take it that you have a verifiable example of wheat on a conveyor belt that is not listed in the ingredients. Please share it with us, by name, and include the evidence.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#12 T.H.

 
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Posted 25 November 2011 - 02:11 PM

whoops, missed that there was more on this thread!

So, Shauna, I take it that you have a verifiable example of wheat on a conveyor belt that is not listed in the ingredients. Please share it with us, by name, and include the evidence.


Actually, I wasn't trying to address that issue specifically. I was simply pointing out that wheat used during production would not necessarily have to be on an ingredient list, even though it should be on the label in a 'contains wheat' statement.

I honestly can't recall if I've ever found any companies that have used wheat on a conveyor belt specifically for a product on that belt (as opposed to shared lines with another product). None come to mind. Cornstarch is what I've usually found being used, if needed. It'd be an interesting project to do some calls to check out if that is pretty universal for products here in the States, though, so I'll likely do that and put what I find up here.

Most uses of wheat flour in molds that I've run across have been chips that were made in-house in restaurants.
  • 1

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#13 Lisa

 
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Posted 25 November 2011 - 02:27 PM

Most uses of wheat flour in molds that I've run across have been chips that were made in-house in restaurants.



I don't understand what you are saying. Would you please explain?
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#14 T.H.

 
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Posted 25 November 2011 - 03:09 PM

I don't understand what you are saying. Would you please explain?


Sure, no problem. There are a lot of mexican restaurants where I am and some of them make their own corn tortillas and/or corn tortilla chips from scratch in the restaurant as a selling point, rather than purchasing them pre-made. I remember a couple of them using the term 'in-house' to describe where these products were made: in the restaurant rather than out of the restaurant.

For some of these, we've been told that they used either wheat flour in the mold for the corn tortillas or wheat flour was used during part of the process to make the chips, frequently to coat the roller that was being used to roll out the chips.

The ones that didn't use wheat flour tended to use corn starch or more dry corn meal or corn masa.
  • 1

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#15 Lisa

 
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Posted 25 November 2011 - 05:56 PM

Sure, no problem. There are a lot of mexican restaurants where I am and some of them make their own corn tortillas and/or corn tortilla chips from scratch in the restaurant as a selling point, rather than purchasing them pre-made. I remember a couple of them using the term 'in-house' to describe where these products were made: in the restaurant rather than out of the restaurant.

For some of these, we've been told that they used either wheat flour in the mold for the corn tortillas or wheat flour was used during part of the process to make the chips, frequently to coat the roller that was being used to roll out the chips.

The ones that didn't use wheat flour tended to use corn starch or more dry corn meal or corn masa.


Yeah..that's probably no surprise. But, I am certain that there are plenty of Mexican Restaurants who use dedicated fryers to cook only corn chips. You should inquire at each restaurant.

I carry Triumph's Dining Cards with me when I attend an ethnic restaurant. It helps with the language barrier, but as in any restaurant, it's no guarantee. I always accept the risk when I choose to eat out, make the best choices I can but can't really blame the restaurant if I get glutened.
  • -1
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien




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