What are Reasonable Expectations for Gluten-free Labeling Laws?
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Feb 15 2011

What are Reasonable Expectations for Gluten-free Labeling Laws?

Very recently I wrote a post about the gluten-free (allergen) labeling laws – or lack thereof – in both Canada and the U.S. There is a new development regarding the situation in Canada. If you live there or are just curious about the latest news, please read this important information. Check out the new Facebook page to help further this effort to put this much needed regulation into place in Canada. The Ottawa Notebook weighed in on the issue here.

On this side of the border, gluten-free diet dietitian, Tricia Thompson, published the results of her survey titled “What Would You Like Gluten-Free to Mean?” I participated in the survey with 999 other people. It was posted to the celiac listserv and the first 1000 people who visited the link got to share their opinion about what gluten-free labeling should mean. The only thing I can say about the results is that I’m very surprised and a little bit nervous that we’ll never get a decent law passed in the U.S. on this important health issue.

When I was in Europe in 2006, not long after my celiac diagnosis, I did not know that at the time the European definition of gluten-free meant there was 200 ppm (or less) of gluten in a product. When I found shelf stable mini loaf cakes, muffins and other treats at Sainsbury in London I stocked up and ate something from the line almost every day for twelve days. So, either I can personally tolerate 200 ppm or the items were actually much lower in gluten than the standard they had to meet legally.

After that trip, I investigated why the suggested limit in the states was only 20 ppm and found out that it’s been proven that even that minuscule amount can cause damage in some individuals. Hence, statistically the lowest denominator must be used for everyone since there is no test to say I can tolerate 150 or 250 ppm of gluten and my gluten-free friend can only tolerate 50 ppm. Fair enough. I’d rather everyone be able to shop and eat safely, even though it means the products available to me might contain less gluten than would be safe for me. My guess is that most everyone would agree that this is the only way to proceed with a standard for gluten-free labeling.

However, based on the results from Tricia’s survey, it looks like we, as a community cannot agree on a reasonable standard for gluten-free labeling. As Tricia commented “the numbers are a bit striking”. That’s one way to put it. I’d probably go a step further to say the numbers are shocking. Almost 80% of respondents want the standard to be lower than the current suggested guidelines of 20 ppm.

My guess is that a law will either be passed for the 20 ppm standard in the near future or we’ll be waiting several years for a law of any kind to pass. I think if the latter happened, we’d be responsible for losing major ground on this issue when there was no real reason to do so. If we can’t be reasonable, I think we deserve whatever law we get – if we get a law at all. If a loaf of gluten-free bread goes up in price instead of down (due to less competition), we’ll have only ourselves to blame. Another listserve member really put things in perspective. The below commentary from Richard L. says it all and in my opinion, says it best.

I’ll say it out loud, as Tricia sort of did anyway. NO detectable gluten is unobtainable and, if set as the standard for gluten free (which I can’t imagine would ever happen anyway), would result in complete chaos in the GF industry and probably many GF things not being declared GF.

Think of this — we might wish for zero bug parts or rodent hairs per million in our processed food, but it doesn’t happen and it isn’t required by the FDA because the FDA knows it’s impossible. You probably eat bug parts every day. In fact, Ohio University estimates we eat one to two pounds of insects every year without knowing it.

Hopefully, we will not set ourselves back ten years by asking for a gluten-free standard that is simply not reasonable.

*Permissions – Richard L., Celiac Listserve, February 2011.

Article Written by:

Tiffany is considered a gluten-free advocate as well as the most discriminating gluten-free diner around. Her goal is to help others learn that there is life after a celiac diagnosis. Gluten-free dining and travel are two of her favorite things to do. Tiffany is a contributing writer and the Advertising Manager at "Delight gluten free" magazine. Check out her local blog, Gluten-Free Atlanta, for tips and tricks about living gluten-free in the ATL! Follow Tiffany on Twitter!

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  • http://glutenfreeeasily.com Shirley @ gfe

    Your article only strengthens my opinion that those of us who need less than 10 ppm gluten, like myself, will give up totally on eating any gluten-free processed foods because they won’t meet what we need to eat safely. In the long run, it won’t be a bad thing because those of us who need NO gluten or less than 10 ppm will eat real, whole food and make our own dishes OR eat the products that get certified to less than 10 ppm by the GFCO. Cynthia Kupper has stated that the GFCO will continue to certify to less than 10 ppm even if the less than 20 ppm standard is passed. There seem to be quite a few folks on the celiac listserv and numerous gf forums who are reporting ongoing issues even though they are eating “gluten free.” I firmly believe that’s because they are eating the products that are supposed to be safe, but I do not believe that many are. I and many others react to lots of these products. Not reacting does not mean a product is safe as we know. And, studies have shown that it takes a very long time for blood testing after gluten exposure to show damage is being done.

    Shirley

  • http://www.glutenfreepromotions.com Tiffany

    Shirley – I know that GIG will continue to certify items to the lower level which I think is great! I personally love finding their symbol on items when shopping. It might be the case that more and more food companies strive to meet that criteria. The point is that since there is no law at all right now (and if one passed tomorrow it would be 18-24 months before it kicked in) it’s likely that some items labeled gluten-free presently are not actually safe for anyone. Many non-certified items are probably not even at 20ppm. And there are no ramifications if the products don’t meet the suggested standard which is bad for us all.

  • http://glutenfreeeasily.com Shirley @ gfe

    Tiffany, it’s such a can of worms as we all know. However the takeaway I got from your article was that if we push for a more stringent requirement, we’re less likely to get anything. I’m sorry if I misunderstood. I’m not sure if it’s really all not a moot point in the long run because from what I’ve read, there’s no indication that the FDA plans to really police and enforce the guidelines set. So whatever the level, will the gluten-free ppm requirement be checked? Will companies go to a third-party inspection and certification process to ensure they meet the requirements? There’s a lot to be discussed here, but I want that requirement as stringent as possible. We’re told that current testing can only detect gluten to a certain level, then my opinion/position is let’s get it to that level.

    Shirley

    • http://www.glutenfreepromotions.com Tiffany Janes

      Hi Shirley – Actually, you did not misunderstand. I believe that getting a law passed asap is better than no law at all. If we start over – which I’m sure you know would be the case re: how the FDA works – by trying to switch the standard to something lower than it’s been previously agreed on (according to the FDA poll that I’m sure you participated in several years ago) would just mean that we’ll be sitting here five years (or more) from now, with no law of any kind. You and I know how to navigate labels, but what about the many others that do not? Something needs to be done – yesterday – and laws can be changed, after all.

      People that are going to stick with 10ppm products anyway might not mind waiting further for a law, but there are countless others out there (I’m sure they contact you as they do me) with heartbreaking stories about how they don’t know what/how to safely feed themselves of their kids. In my opinion, having an actual law will be an improvement over what we have now which is basically nothing. I can’t keep track of all the companies that have told me until there is an actual law passed by the FDA, they are not going to label their gf items as such. In most of those cases, the companies are paying outside, respected labs to test the items for safety (albeit to the 20ppm standard.

      Surely, having products that actually meet a standard of 20ppm is better than having a hodge podge of products out there touting the gf label, not all of which are safe. The bakery in NC that sold gluten items as gf comes to mind. Another bakery used to state their ‘no gluten ingredients’ items were gf and the last test of them showed them to contain 5000 ppm. Once that news came out, the bakery stopped claiming said items were gf, thank goodness.

      You’re absolutely correct about the law not being able to protect us in every way – no matter what the standard. Some companies will do dishonest things and there is no way around that. But I think that companies that really care about keeping us as long term customers will do right by us and therefore, those are the ones I support and will continue to support – law or no law ;)

  • http://hubpages.com/profile/infonolan Kelly

    Here in Australia, the gluten free labelling laws dictate that a product must contain absolutely NO detectable gluten, NO oats (at all) and NO malt. I think it is ridiculous that the coeliac society of Australia is trying to force labelling changes upon Australians (i.e. moving from the current limit <3ppm to <20ppm). The ACCC has thankfully refused to address the concerns of this organisation and the results are pleasing thus far as far as I'm concerned! What do you think about this matter? I have published an article on a hub to address this: http://hubpages.com/hub/Against-The-Coeliac-Society-of-Australia

    • http://www.glutenfreepromotions.com Tiffany Janes

      Kelly – As it’s been explained to me by gf diet experts here, we don’t use the same type of tests here and therefore, I know MANY companies that are not able to get their products into Australia. I’ve never understood why the testing methods down there can’t be used here, but either way, I’d like to see the 20ppm standard passed as opposed to no law at all.

  • Kristie

    My 2 year old daughter was recently diagnosed with celiac disease and all I can say is I don’t know how you guys do it. I don’t understand any of it yet. I wish there was better labeling on all the products because I am finding even if your looking in the celiac section at whole foods it doesnt mean it is gluten free. I have bought a few books but I am still confused as to which products I need to check for in the ingrediants list so if it doesnt say gluten free so far, I’m just not buying it. I never even heard of celiac disease until recently but I am learning it is a real serious problem in our society and i wish there was alot more awareness out there for people who dont suffer from it as well as for those who do. I am struggling to learn all of this and how to incorporate it all into my baby girls new lifestyle. Any advice you would like to offer would be sooo apreciated. Thank you

    • http://www.glutenfreepromotions.com Tiffany Janes

      Kristie – Welcome to the gluten-free world! Don’t worry, we’ve all been where you are and understand how daunting this can be in the beginning. We have a ‘getting started type guide’ on this website. Look to the right of this page where it says “New to the gluten-free diet?” and click on ‘learn more’.

      For books, Shelley Case’s book is the only one I recommend for the actual diet part. I wrote a post explaining my picks for best guides to learning everything you need to know. You can read it by clicking this link – http://celiac-disease.com/recommended-gluten-free-reading-list/

      You will get through this and eventually (in many months probably), the diet will be second nature to you. The learning curve is actually about a year for most people when doing it for themselves, but with parents, they tend to put in overtime to learn things faster to feel comfortable feeding their kids. Best of luck to you!

      • Kristie

        Tiffany, Thank you so much.. I am cheking those things out right now. It is very over whelming at first but I have been reading up and have an apointment next month with the nutrishionist so hopefully we are headed in the right direction. It is alot of planning ahead I am learning. We are taking the kids to co co keys during feb vacation next week and we need to plan ALOT in advance for her food needs. It is a bit difficult to find kid friendly options, I am a person that loves to cook and bake so I am getting my kitchen organized so that I can start making her the things she is used to but in a new way. It is so stressful to make sure things dont get contaminated and almost harder because some things she can have because they are gluten free but she is now lactose intolerant too so that rules some thing out… It’s nice to find someone that understand what we are going through. I have friends that try to help but they say silly things like I have a friend with celiac and she can drink potaote vodka…..thats great… But for my 2 year old… not helpful…lol… they mean well.. So thank you very much for the information I really appreciate it.
        Kristie

        • http://www.glutenfreepromotions.com Tiffany Janes

          Kristie – I’m glad you’re seeing a nutritionist, but proceed with caution there. Things are much better now than they used to be, but it’s common to find a nutritionist or dietitian that doesn’t know much about the gf diet. My favorite mistake they make is to suggest people eat Rice Krispy cereal which happens to have barley malt in it and therefore, it is not gf. Regarding your friend’s comment about her friend drinking potato vodka, all distilled alcohols are actually gf, unless gluten flavors are added. Shelley Case’s book debunks all the common myths about the diet. But, you are right that most people mean well – they will just never truly ‘get it’ unless they are also living gf. There is a really bright spot in your case. Your daughter is a good age to start the diet. She will never miss her favorite foods or remember what gluten foods taste like. That will turn out to be a wonderful thing for her. In the case of some adults with celiac, they can’t tolerate dairy until they heal (which happens once the gf diet is started). Be sure to ask your doctor about this possibility with your daughter.

  • Kristie

    Tiffany,
    Thank you so much. I have been reading more about changing my kitchen around and how to shop, which is really challenging. I have a 6 year od son and trying to get him to change his eating habits so it at least looks like they are eating similar foods has been difficult but we are trying. I am glad that there will become a point where she wont remember the other foods she once loved but as for now it is difficult to find new ones. took us 2 hours yesterday to find some foods for her that were gluten and lactose safe. I will definately ask the doctor about her being able to heal and be able to have lacotse again. That would make things a littl easier when shopping. Thank you very much… I really appreciate it. It’s nice to be able to talk to somene else that is living the gluten free lifestyle too.