What Does Certified Gluten-Free Really Mean?

[Ciel121]

I bought a chocolate peanut butter powder by the brand Just Great Stuff that states it is certified gluten-free and felt sick, so I double-checked the package...apparently it is made in a facility that processes wheat, yet it is certified gluten-free... That is very confusing because I can tell you, it's NOT gluten-free. I got a mild headache compared to my gluten migraines, and my stomach hurt. Does this label really mean anything? Does it protect us? I'm not so sure any more. 

[Adalaide]

Open Original Shared Link

 

Unless the package states on it which of the organizations it has obtained the certification through, I always assume that they are simply blowing smoke up my skirt and are so completely clueless as to what they are talking about and so interested in selling a product that they are incapable of manufacturing a safe product because they are bandwagoners. If it was actually certified, the package would list the organization because that is the only way to gain the trust of knowledgeable consumers. Without that, they are simply trying to appeal to the lowest common denominator... the fad gluten freer. Of course, that is simply my opinion.

[Gemini]

I see from your signature that you are also allergic to soy and soy is another item used in their products.  It may not have been gluten that made you feel ill.  This place is a shared facility but claim they use good manufacturing practices to segregate products....which may or may not be successful.  The only way to have your question answered about certified gluten-free status is to call and ask them.  But I did not see anything on the website that said this product is soy free so that may have been the problem.

[IrishHeart]

I see from your signature that you are also allergic to soy and soy is another item used in their products.  It may not have been gluten that made you feel ill.  This place is a shared facility but claim they use good manufacturing practices to segregate products....which may or may not be successful.  The only way to have your question answered about certified gluten-free status is to call and ask them.  But I did not see anything on the website that said this product is soy free so that may have been the problem.

 

I was ready to say this,but you have it covered, GEM  .

 

It's not always gluten that bites us on the butt. I know, because soy and I do not get along.

 

However.....I looked at some of the OTHER products in her line and she uses Barley, etc.

 

So....it may be" free of gluten ingredients, but it may also be CCed.

 

I, personally, look for the CERTIFIED G F in the black circle logo from GIG..but that's just me.

and offered IMHO. 

[Ciel121]

Thanks! I came to similar conclusions as what some people posted. I might be allergic to chocolate, though I'm not sure. My reaction is definitely not from soy because I never ever get headaches from soy.

  So the black circle logo means it is always certified by the Gluten Intolerance Group?  That is what is on the package of this chocolate peanut butter product. I called this company (Just Great Stuff produced by Betty Lou's) and spoke to a man who introduced himself and the son Betty Lou, who was quite rude, might I add... He assured me they do gluten testing and score below 5 ppm, but would not name the group that certified the product. Not sure why. But he kept saying there is only one group that does it, which is not true. Then he went on to complain about how much it is costing him to certify his product as gluten-free and was reminiscent about the old days when he didn't have to go to all this trouble.

  Even if this product is truly gluten-free, I would not buy it from a company that has no desire to support Celiacs..

  But I totally agree with Adalaide. If it doesn't state who certified it, I won't buy it.

[dilettantesteph]

On their website: Open Original Shared Link

it says that it is certified by the GFCO to 10 ppm.

 

Unfortunately, I react to even these low levels as do some other super sensitive celiacs.  What I need to do with new items, is add only one per week to check if I react to it or not.  I had a very hard time early in my diagnosis figuring out what was going on with this.

[Gemini]

Stephanie.....you must know by now that testing to 10ppm's does not mean there is any gluten in a product.  Lord knows, this topic has been discussed many times on this forum.  There could very well be absolutely no gluten in a product.  So, saying that you react to these small levels when you have absolutley no proof to back up your statements as far as gluten levels are concerned, is misleading to those newly diagnosed.  You have no idea if it's gluten or something else because you don't have the lab set-up or the money to test to those levels.

 

Ciel...that certification is as good as it gets from anyone in Celiac world. If you are looking for certification on any product to 0 ppm's, then stop eating everything except whole foods.  Oh, wait a minute.....some people even suggest on this forum that even whole foods have gluten in them. I guess you better stop eating altogether, just to be on the safe side. 

 

No one will certify anything to that level because it would just cost too much money and you wouldn't be able to afford anything gluten-free that was processed.  That does not mean there is any gluten in the product.  Ask those of us who are sensitive on this forum and if the majority say they are fine with the product, then it's probably fine for you too. As for the son, he may just be a jerk.  If the company did not support Celiacs, then they would not sell any gluten-free products.  You have not been gluten-free for very long?  You were drinking a coffee substitute that contained barley so you may not be feeling well from that.  Mistakes are common and expected in the beginning so you still may react to a product with no gluten in it....happens all the time. Or, the reaction could have been from something else and manifested itself later, after you ate the PB/chocolate item.  Or the fact that you ate chocolate and PB together, in a powdered form, may not have agreed with you for no other reason that it didn't.  You have more learning to do with label reading and learning the diet in general but we all went through that so please be patient.  There is a bit of a learning curve with this.

[dilettantesteph]

Gemini, I think that I have as much proof that I am reacting to gluten when I eat something that contains gluten as anyone else here.

 

There are companies out there that keep records of their gluten testing.  You can call them with your product code number and they will tell you what level of gluten it contained.  Amy's has done this for me in the past.  I don't know if they still do it.  The University of Nebraska also had a policy of testing things that people react to and would say what level of gluten it contained.  I don't know if they still do it.   This is how I know that I react to gluten in the above 5 ppm, below 10 ppm region.  

 

Of course I know that something certified to below 10 ppm doesn't necessarily contain any gluten at all.  I don't think that any newbie would have little enough sense to believe that I am trying to tell them that a product tested gluten free to a 10 ppm detection level necessarily contains just below 10 ppm gluten.  It should be clear that it *could* contain gluten to just below 10 ppm.  It could also contain no gluten at all.

 

I was telling them that it is possible to react to gluten levels below 10 ppm because it is possible to react to gluten levels below 10 ppm.

 

When I was a newbie, I kept reacting to gluten free food and I didn't understand why.  People like you kept telling me that I couldn't possibly be reacting to gluten in gluten free foods.  I kept thinking that it had to be another ingredient like people were telling me so I kept trying different gluten free foods that didn't contain these other ingredients and I kept getting sick.  It wasn't until I realized that I react to low levels that I could finally stop being sick.  I would really like to help people know that this is a possibility, however slight, so that this won't happen to others who are super sensitive like I am.

[dilettantesteph]

To be more clear, I didn't realize that I was reacting to gluten free foods on my own.  My GI doctor told me that it was a possibility.

[Adalaide]

Thanks! I came to similar conclusions as what some people posted. I might be allergic to chocolate, though I'm not sure. My reaction is definitely not from soy because I never ever get headaches from soy.

  So the black circle logo means it is always certified by the Gluten Intolerance Group?  That is what is on the package of this chocolate peanut butter product. I called this company (Just Great Stuff produced by Betty Lou's) and spoke to a man who introduced himself and the son Betty Lou, who was quite rude, might I add... He assured me they do gluten testing and score below 5 ppm, but would not name the group that certified the product. Not sure why. But he kept saying there is only one group that does it, which is not true. Then he went on to complain about how much it is costing him to certify his product as gluten-free and was reminiscent about the old days when he didn't have to go to all this trouble.

  Even if this product is truly gluten-free, I would not buy it from a company that has no desire to support Celiacs..

  But I totally agree with Adalaide. If it doesn't state who certified it, I won't buy it.

 

I should also have pointed out, that not everyone says who they are certified through but expect us to be familiar with the logos of each of the three organizations. I suggest being familiar with these (and each of their general guidelines) so you can see a logo and say to yourself hey, I'm comfortable with that... or not.

[Ciel121]

Stephanie.....you must know by now that testing to 10ppm's does not mean there is any gluten in a product.  Lord knows, this topic has been discussed many times on this forum.  There could very well be absolutely no gluten in a product.  So, saying that you react to these small levels when you have absolutley no proof to back up your statements as far as gluten levels are concerned, is misleading to those newly diagnosed.  You have no idea if it's gluten or something else because you don't have the lab set-up or the money to test to those levels.

 

Ciel...that certification is as good as it gets from anyone in Celiac world. If you are looking for certification on any product to 0 ppm's, then stop eating everything except whole foods.  Oh, wait a minute.....some people even suggest on this forum that even whole foods have gluten in them. I guess you better stop eating altogether, just to be on the safe side. 

 

No one will certify anything to that level because it would just cost too much money and you wouldn't be able to afford anything gluten-free that was processed.  That does not mean there is any gluten in the product.  Ask those of us who are sensitive on this forum and if the majority say they are fine with the product, then it's probably fine for you too. As for the son, he may just be a jerk.  If the company did not support Celiacs, then they would not sell any gluten-free products.  You have not been gluten-free for very long?  You were drinking a coffee substitute that contained barley so you may not be feeling well from that.  Mistakes are common and expected in the beginning so you still may react to a product with no gluten in it....happens all the time. Or, the reaction could have been from something else and manifested itself later, after you ate the PB/chocolate item.  Or the fact that you ate chocolate and PB together, in a powdered form, may not have agreed with you for no other reason that it didn't.  You have more learning to do with label reading and learning the diet in general but we all went through that so please be patient.  There is a bit of a learning curve with this.

   So funny! I have to agree that there is something that just makes me paranoid and others paranoid about gluten to extreme levels! This can drive you nuts after a while. I've been gluten-free for 4 years, so I'm not new to this and I have read every book, article on the market and internet on this, yet I am still learning something new every day. What is annoying is that I have become even more sensitive to gluten over these 4 years and have ataxia symptoms now when I get badly contaminated...errr. Plus it seems I have a brand spankin' new allergy to chocolate...time for some carob.

   I have an appointment at the Celiac Center at Columbia University in late June. It can't come soon enough to answer my tough questions.

   As for this company, Betty Lou's, I did read up on gluten testing being inaccurate for ELISA testing for barley. With that being said, Betty Lou's shares equipment with barley. I don't know if the GFCO has a way of testing barley gluten that is more accurate, if not then this might be not gluten-free due to the barley gluten exception.

    Ahh...yes this is madness after a while. I have to admit I have days when I've just had it and eat apples, chicken and sweet potato and that's it.

    But I swear I never reacted to the Dandy Blend coffee substitute. I gave it up, but I never reacted to it. Weird.

    Incidentally, I read an article about Australia certifications for gluten-free being below 8 ppm and Celiacs having less symptoms, so there might be something to that lower gluten rating.

[Gemini]

   So funny! I have to agree that there is something that just makes me paranoid and others paranoid about gluten to extreme levels! This can drive you nuts after a while. I've been gluten-free for 4 years, so I'm not new to this and I have read every book, article on the market and internet on this, yet I am still learning something new every day. What is annoying is that I have become even more sensitive to gluten over these 4 years and have ataxia symptoms now when I get badly contaminated...errr. Plus it seems I have a brand spankin' new allergy to chocolate...time for some carob.

   I have an appointment at the Celiac Center at Columbia University in late June. It can't come soon enough to answer my tough questions.

   As for this company, Betty Lou's, I did read up on gluten testing being inaccurate for ELISA testing for barley. With that being said, Betty Lou's shares equipment with barley. I don't know if the GFCO has a way of testing barley gluten that is more accurate, if not then this might be not gluten-free due to the barley gluten exception.

    Ahh...yes this is madness after a while. I have to admit I have days when I've just had it and eat apples, chicken and sweet potato and that's it.

    But I swear I never reacted to the Dandy Blend coffee substitute. I gave it up, but I never reacted to it. Weird.

    Incidentally, I read an article about Australia certifications for gluten-free being below 8 ppm and Celiacs having less symptoms, so there might be something to that lower gluten rating.

You will become more sensitive as time goes on.  That is something which happens a lot with Celiac...if you follow the diet correctly and are strict with it. 

 

I would have to read up more on the company in question as I have never had any problems with food that is certified....no matter where the certification came from.  I have only seen one company's logo on the certification for things I buy so never paid too much attention to all the detail.  I am very sensitive also but do not have much experience with companies that also use barley as an ingredient.  I stick with straight coffee and not coffee substitutes and the same with food in general.  You may have something else going on so it's good you are seeing someone at the Celiac Center to help sort this out.  You'll have to let us know what your experience was like.

 

The certifications I have read test down to either 5 or 10 ppm's....but you know that does not mean there is 5 or 10 ppm's in the food.  Many of these places are also dedicated facilities so the chance of food being contaminated is pretty low.  There would be too many Celiac's who would not heal if this were true.  So, the Australian rating of 8 ppm's is really not different than the ones in the US.  I doubt there are studies that explicitly state that Celiac's are less symptomatic in Australia than in the US.  Celiac is more well known in Australia than the US at present so I think many people here make mistakes because they have not learned enough about the diet or may cheat more. After a few years gluten-free, no one should be taking a hit on a regular basis, if they have done their home work and are careful.  If you are still having problems, then it could very well be a new intolerance or an underlying condition.  You are doing the right thing by going to a Celiac center for some (hopefully) answers.

 

Let us know how it goes! 

[Kamma]

The laws in Australia require that for a product to be labelled gluten free, it must contain no detectable gluten and the current standards test down to 3 ppm not 8 ppm.  Products that test above that and up to 20 ppm can be labelled 'low gluten'.

 

Gemini, I find dilettantesteph's posts to be very informing and she provides her experience which can be valuable for some celiacs who are still reacting to lower, trace amounts of gluten.  Her reactions to gluten at lower levels are proof enough that she is reacting and she has always been diligent in testing out her reactions against the suspect food, ruling out different causes and sharing that here.  She is not an off the cuff poster and has always provided much detail in her experiences and what she has done to make herself better.  

 

Please do remember that the 20 ppm is a recommendation/suggestion from the studies and is always said in conjunction with "safe for the majority/most celiacs".  Dilettantesteph's posts reflect the experience of a celiac that is outside of the majority of celiacs but is esteemed in providing information for those that still have problems with the 20 ppm gluten levels.  There is very little research on these sensitive celiacs (but are confirmed by Fasano's recent study) so first hand knowledge shared here by posters such as herself is valuable to those still finding their way.

[Gemini]

Kamma.....people can choose to believe whatever they want from reading the vast array of responses presented on this forum.  I choose to stick to information that is not founded on information that cannot be proven.  If you do not have a lab set up in your home that can detect down to 1 ppm, then you cannot prove there is low level gluten in the suspect food. And if you read some of the other posts on other forums that some people here frequent, I can only say there is a lot of room for doubt.  Most of what is posted is not based on any kind of reliable science. 

 

I have never accused anyone of being an "off the cuff" poster.  But when I see someone post information saying they had a gluten reaction to vegetables, it is imperative to make sure the newly diagnosed do not get the wrong idea and think that plain vegetables have gluten in them and need to be questioned as to their safety.  The "coating on vegetables" is a prime example. I have yet to see any reputable Celiac organization warn people about this and they would be a good source of truthful and reliable information.....for the most part.  Nothing in life is 100% but I think that the major Celiac researchers and organizations that are here to help would have the most timely information.  And we all know that just because someone states they had a reaction, does not mean it's a gluten reaction.  There are so many other reasons why people do not heal well or heal slowly or have problems with many other foods, as I am sure you already know. 

 

I will state again that the 20 ppm limit does not mean there is 20 ppm's of gluten in a particular product.  It could very well be zero.  I would tend to believe that it is low because I am also very, very sensitive and would most likely still be sick if I routinely ate foods that were giving me a small constant gluten hit.  Ditto for most Celiacs.  The vast majority heal well and go on to live normal lives, without questioning whether their broccoli is safe. It's not too hard to figure out once you learn the diet and I don't think we need the expense of labeling laws that want to test down to 3 ppm....because that's going to drive the cost of food up even higher. If you are that concerned, eat whole foods and nothing else.  If you question a company and find out what their manufacturing process is like, which I have done many times in the past, you'll know what food is safe to eat and what isn't. This isn't rocket science. BTW....most all of the companies I buy products from test down to either 5 or 10 ppm.....not 20.  People throw that 20 ppm number aorund a lot, with regards to the US, and make it seem like our gluten-free food is contaminated and will make you sick.  On the contrary.....it is growing by leaps and bounds, which is good.  Most of the companies out there are very responsible and want to provide safe food for us to eat and I think they do a pretty good job. Celiac's are not going to buy food that makes them ill and companies will not last if they don't get it right.

 

I do agree that first hand knowledge is invaluable, as we see here all the time. However, if it goes against everything we know about Celiac or people are making claims that cannot be proven or backed up by valid information, expect to get feedback.  It creates a lot of fear of food, which does not do anyone new to this any good.  There are many reasons for reactions and people should be aware of that.

[Kamma]

Kamma.....people can choose to believe whatever they want from reading the vast array of responses presented on this forum. I choose to stick to information that is not founded on information that cannot be proven. If you do not have a lab set up in your home that can detect down to 1 ppm, then you cannot prove there is low level gluten in the suspect food. And if you read some of the other posts on other forums that some people here frequent, I can only say there is a lot of room for doubt. Most of what is posted is not based on any kind of reliable science.

 

I understand what you are attempting to achieve, Gemini. I am a huge proponent on providing scientifically validated research and allowing people to make informed decisions based on that. The other side of this is the vast amount of personal experience that people bring to the table as well. It can provide ideas, tips or just plain old comfort. My point with dilettantesteph's postings is that she has provided a glimpse into her personal experiences and what she has done to determine what is causing her symptoms. .

At this point, beyond Fasano's recent study, there are few other research studies dedicated to people who do not heal on a 'gluten free' diet. That there are those who do not respond except to a gluten elimination diet has been scientifically proven and can no longer be refuted. In the absence of this, personal experiences like dilettantesteph's can provide a starting point for those who are not healing. She's always been a balanced, intelligent voice, gives details, provides research and also assures that her experience is probably not shared by the vast majority of celiacs. This type of approach is deserving of respect.

I have never accused anyone of being an "off the cuff" poster. But when I see someone post information saying they had a gluten reaction to vegetables, it is imperative to make sure the newly diagnosed do not get the wrong idea and think that plain vegetables have gluten in them and need to be questioned as to their safety. The "coating on vegetables" is a prime example. I have yet to see any reputable Celiac organization warn people about this and they would be a good source of truthful and reliable information.....for the most part. Nothing in life is 100% but I think that the major Celiac researchers and organizations that are here to help would have the most timely information. And we all know that just because someone states they had a reaction, does not mean it's a gluten reaction. There are so many other reasons why people do not heal well or heal slowly or have problems with many other foods, as I am sure you already know.

In regards to edible coatings on vegetables and fruit, Canada has now implemented a guideline in which prepackaged fruits and vegetables must declare what kind of allergen might be present in their edible food coatings. This does not apply to unpackaged fruits and vegetables and consumers rely on the volunteering declaration of producers. In the US, I believe they must follow the GRAS guidelines. Prior to this, wheat based edible food coverings (and this is one of many types of edible food coverings) could very well be consumed unknowingly and could cause problems for those who are ultra sensitive. As you know, there are many degrees of sensitivity which all the research papers are adamant about. One size might fit the majority but not the all.

 

I would have to offer a different viewpoint on official celiac organizations having timely information and posting that for consumers. Take in case gluten ataxia. Some celiacs have this and some people who don't react intestinally at all experience this. There is not one mention of this on the Canadian Association of Celiac and the Celiac Disease Foundation. There is a vague heading of "neurological symptoms" with no details. Further, the most recent research reports posted on their websites were research papers from 2009 (Celiac - CCA), 2011 (Gluten Sensitivity - CCA) and 2011(CDF). The CDF has a separate label for Research News in which some new research is  posted. The CSA fares much better in this in providing a link to search all (not just pertaining to celiac) recent research by date. In addition, none of these sites has any information regarding Fasano's recent study on celiacs who do not heal on a traditional gluten free diet. I tried searching for it on the link provided but gave up after weeding through hundreds of research papers. I can imagine what newcomers to the world would feel like trying to find information for themselves by systematically going through each one. Overwhelming to say the least.

Gluten Ataxia has been consistently researched from 1996 while Fasano's study was released earlier this year but neither are mentioned on 2 of these sites. This is a little slow in releasing information to the consumer and it has been left up to reader's like diletanttesteph to bring that research here and educate people. I'd also like to point out that the existence of gluten ataxia was more than likely around before research started to look into it to determine it's causes. Just like super sensitivity is around and to date, we have just a few research papers on it.

The initial responding of scientists in listening to patients who said they were experiencing either these conditions validated those experiences. It's only by taking heed and saying, 'there might be something here worth investigating" that the scientific proof can be developed. These scientists did not say, "you cannot be experiencing this because you have no proof". An open and objective mind is the hallmark and basis for scientific research and it develops theories, tests them and either validates or discards them. This is a valuable skill and it cannot hurt to practice it.

I will state again that the 20 ppm limit does not mean there is 20 ppm's of gluten in a particular product. It could very well be zero. I would tend to believe that it is low because I am also very, very sensitive and would most likely still be sick if I routinely ate foods that were giving me a small constant gluten hit. Ditto for most Celiacs. The vast majority heal well and go on to live normal lives, without questioning whether their broccoli is safe. It's not too hard to figure out once you learn the diet and I don't think we need the expense of labeling laws that want to test down to 3 ppm....because that's going to drive the cost of food up even higher. If you are that concerned, eat whole foods and nothing else. If you question a company and find out what their manufacturing process is like, which I have done many times in the past, you'll know what food is safe to eat and what isn't. This isn't rocket science. BTW....most all of the companies I buy products from test down to either 5 or 10 ppm.....not 20. People throw that 20 ppm number aorund a lot, with regards to the US, and make it seem like our gluten-free food is contaminated and will make you sick. On the contrary.....it is growing by leaps and bounds, which is good. Most of the companies out there are very responsible and want to provide safe food for us to eat and I think they do a pretty good job. Celiac's are not going to buy food that makes them ill and companies will not last if they don't get it right.

In your statement above you are asking to accept on faith your personal experience that you are very sensitive and would most likely get sick. I have no problem with this. Just as I have no problem with accepting on faith dilettantesteph's that she does get sick on lower levels of gluten. Neither of you can provide any proof except your personal experience. The vast amount of research out there always provides the addendum that there are varying degrees of sensitivity.

I read an interesting study done at the University of King Fahd, Saudi Arabia in which they measured dietary compliance to the gluten free diet. They found that there was a marked decreased in compliance the less a person was educated citing lack of knowledge and skills in obtaining that knowledge. These findings are not just exclusive to celiac as health indicators are always lower for uneducated and/or poor people. I imagine you to be an intelligent woman, Gemini and have great skill in obtaining the information you require. However, there are those who are not in your position and would not or could not go about getting the information that would help them to be healthy or be informed. For them it would be hard and quite difficult and the consequence of it would be repeated glutenings. Lowering the acceptable gluten level to "no detectable gluten" would greatly improve consumer confidence, eliminate confusion (which we see here all the time) and help eliminate the trace glutens that people are getting because they don't know how to do that for themselves.

I cannot speak to whether it would increase the price of gluten free food or not. I know the food lobbyist group in Australia does say that it would decrease their costs if they raise the gluten levels but countering that is the statement of the Director of Freedom Foods (Former Director of Kellogg's Australia) which produces gluten free products and is protesting this proposed changed who says that it wouldn't make one bit of difference. To date, I cannot find any research that studies the cost effectiveness of gluten levels in gluten free food.

I do agree that first hand knowledge is invaluable, as we see here all the time. However, if it goes against everything we know about Celiac or people are making claims that cannot be proven or backed up by valid information, expect to get feedback. It creates a lot of fear of food, which does not do anyone new to this any good. There are many reasons for reactions and people should be aware of that.

The research on celiac is evolving. A few short years ago it was believed it was a child hood disease and you would grow out of it or that 100 ppm million was a safe gluten level to consume to name a few things. We don't know everything about celiac and should hold an objective mind to experiences that cannnot be proven or backed up by valid information. After all, this is what Hadjivassilliou and Fasano did and they started to develop the research for gluten ataxia and super sensitives. By it's very nature, a forum is not the place where we can prove personal experiences. I understand that you want to eliminate fear mongering but there are some posters whose experience lies outside of the mainstream celiacs and until further studies can be completed all we can do is listen, question, support and provide constructive insight in a way where everyone can feel valued and not feel scared to come on here or feel misunderstood.

None of us are experts except in our own personal experiences.

Thank you for replying.