Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Can We Do To Hurry Along A Labeling Law?!(i'm In The Us)


Guest thatchickali

Recommended Posts

Guest thatchickali

Okay, I have no doubt that with the growth of Celaic Awareness SOMEDAY there will be a law that requires a product to be stated gluten free.....

But what can we do to hurry the process? Talk to local reps/senators? Who????? I am so ignorant to political science so I really have no idea where to start but I am ready to not have to worry about hidden gluten.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



loco-ladi Contributor

My advise would be start at the bottom and work your way up, start with the state level then increase as you get maybe a little help from "the little guys"

Those little guys have interesting phone numbers and such ya know ;) not to mention maybe personal email addys of senators congressmen and maybe even FDA people :o

mommyagain Explorer

There actually is a labeling law in the works... called CODEX (I don't know what that means). Unfortunately, the FDA has decided that there is a "safe" level of gluten that will be allowed in "gluten-free" items. That safe level is, according to them, 20ppm. Well, for those of us who react to a crumb (or less!), I have to assume that 20ppm is NOT SAFE!!! Also, the FDA has deemed that oats are, by definition, gluten free, even though every celiac organization in the US has declared that in the US, oats cannot be guaranteed to be gluten-free due to harvesting techniques currently in use.

So, when the labeling laws actually take effect, the Gluten-Free label will mean even less than it does now. Right now, most companies who use Gluten-Free on their packaging explain that the product was made on dedicated lines, or something like that. The new law will not prevent cross-contamination during manufacturing, because the amount of gluten that actually transfers is extremely low, probably too low to register on testing equipment, but still enough to make us sick.

So, I am NOT looking forward to labeling laws in the US, because the FDA refuses to believe that cross-contamination is an issue. Basically, the FDA is heavily influenced by lobbyists, especially those working for large corporations. The corporations WANT a labeling law (because it'll make them look good) but, they want it to be easy to apply to all of their cross-contaminated crap, because they don't want to take the trouble to have dedicated lines for gluten vs. gluten-free items.

The law is also going to make it more difficult to get strait answers from manufacturer's. For instance, if I call a company and ask if Product X is gluten-free, they can say "of course it is, it says so right on the box" even though it is packaged in the same room as something gluten-filled.

On the other hand, I would be thrilled with a labelling law that designated between "gluten free" and "low gluten". The "gluten free" label would be restricted to those items that are naturally gluten-free AND produced in a gluten-free facility. Low gluten would apply to items that test below the 20ppm limit, but may be subject to cross-contamination in the packaging facility. That way, the companies that go out of their way to be careful would not be lumped together with the companies that don't, but just happen to produce something that is naturally gluten-free.

kbtoyssni Contributor

I don't really want the law hurried up, either, for the reasons that mommyagain stated. In the end, I only trust myself to make the decisions about what I will and will not eat. I do not want to put that trust in large corporations and with this new law I feel like I'm being forced to trust them more which I am not happy about.

Ridgewalker Contributor
On the other hand, I would be thrilled with a labelling law that designated between "gluten free" and "low gluten". The "gluten free" label would be restricted to those items that are naturally gluten-free AND produced in a gluten-free facility. Low gluten would apply to items that test below the 20ppm limit, but may be subject to cross-contamination in the packaging facility. That way, the companies that go out of their way to be careful would not be lumped together with the companies that don't, but just happen to produce something that is naturally gluten-free.

Now this would indeed be ideal! I really don't see why it should be such a hardship for companies to be required to put on their packages whether or not their product is produced in a gluten-free facility or not. I mean jeez, all it takes is an extra line of print or two to save people days of illness.

-Sarah

blueeyedmanda Community Regular

I am not looking forward to the new law either. I use Wegmans brand gluten free coded products and their company already released a statement about the new law and how there is discrepencies. I think it is going to cause more trouble than good.

psawyer Proficient

A major issue here is that for the law to be meaningful, it must be enforceable. To be enforceable, compliance must be verifiable.

Scientifically, it is impossible to prove the 100% absence of any particular substance. Tests for the presence of a substance have thresholds below which they do not detect the substance, even if it is there. Also, the more sensitive the test, the more it costs to perform.

20 parts per million is a level for which testing methods are available at a cost that will not drive of the cost of production beyond a level that people will pay. This is especially important for products which are produced for the mainstream market and which happen to also be suitable for a celiac diet.

I know some of you don't want to hear that, but that *is* the reality of it. This has been discussed many times on this board, and on others as well I am sure.

People should also not assume that because the test threshold is 20ppm, all products so-labeled will, in fact, contain 20 ppm. Although not verifiable, 1ppm or even less, would still meet the standard.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mama2 Apprentice

I am sick of hidden gluten too! but I agree with everything being said about the new law. I feel it may complicate things more! There needs to be a way of marking things ... so we know as consumers what we are eating. I feel that with the new law the corperations will always be trying to cover their behinds and confuse us even more.

ptkds Community Regular

Ok, so what do we do to get the upcoming law changed? Who can we contact? If it hasn't been passed yet, there is still time to change it (I hope). Anyone know who we cantact ?

ptkds

tarnalberry Community Regular
A major issue here is that for the law to be meaningful, if must be enforceable. To be enforceable, compliance must be verifiable.

Scientifically, if is impossible to prove the 100% absence of any particular substance. Tests for the presence of a substance have thresholds below which they do not detect the substance, even if it is there. Also, the more sensitive the test, the more it costs to perform.

20 parts per million is level for which testing methods are available at a cost that will not drive of the cost of production beyond a level that people will pay. This is especially important for products which are produced for the mainstream market and which happen to also be suitable for a celiac diet.

I know some of you don't want to hear that, but that *is* the reality of it. This has been discussed many times on this board, and on others as well I am sure.

People should also not assume that because the test threshold is 20ppm, all products so-labeled will, in fact, contain 20 ppm. Although not verifiable, 1ppm or even less, would still meet the standard.

100 times - ditto.

There will never be a "gluten free means 0ppm gluten" law. It is not enforceable. Additionally, expecting lots of foods to be made in gluten-free facilities is unreasonable - production facilities are too expensive.

Have you ever let a pretzle or granola bar or cookie in your house? Then YOU have a SHARED FACILITY.

mama2 Apprentice

I have been thinking about this ... once we figure out who we need to contact... we should figure out what we would like for the law to included ... something that will suite celiacs not just the companies. If we are clear and concise and have a united requet, I believe we have a better chance at change!

nmw Newbie

Open Original Shared Link

It's all right here folks.

tarnalberry Community Regular
I have been thinking about this ... once we figure out who we need to contact... we should figure out what we would like for the law to included ... something that will suite celiacs not just the companies. If we are clear and concise and have a united requet, I believe we have a better chance at change!

They already had a time period for input from celiacs on the new laws - in order to get the definition of gluten free. (There were links posted to it here earlier this year or late last year to submit your responses.)

tarnalberry Community Regular
Open Original Shared Link

It's all right here folks.

That's the position for CODEX - the international standard - but not the US law. There's a reference in there to the proposed US regulations, however: Open Original Shared Link

nmw Newbie
That's the position for CODEX - the international standard - but not the US law. There's a reference in there to the proposed US regulations, however: Open Original Shared Link

Oops! So sorry, and thanks for the correction. I'm in post-endoscopy/colonoscopy mode this evening and feeling rather fuzzy.

lovegrov Collaborator

Just rambling here. I know of no place that demands 00.00 to be gluten-free, and testing for that would be impossible anyway. I know you can test down to at least 3 parts per million and maybe a little less but it will NEVER be zero. And the reality is that we have NO standard right now. I can't imagine we'll get better than 20, and most experts agree that's well below the threshold that will affect most people with celiac.

I've been gluten-free for right at 6 years now -- in fact that anniversary will be coming up in about a week -- and to those of you who have just started in the past year or two, you can't imagine how much easier it is now. The allergen law isn't perfect, but it's so much better than before. And I think the gluten standard will improve things, as well.

This is the group that pushed for and got the allergen law. This is probably where your comments should go.

Open Original Shared Link

richard

mama2 Apprentice
Just rambling here. I know of no place that demands 00.00 to be gluten-free, and testing for that would be impossible anyway. I know you can test down to at least 3 parts per million and maybe a little less but it will NEVER be zero. And the reality is that we have NO standard right now. I can't imagine we'll get better than 20, and most experts agree that's well below the threshold that will affect most people with celiac.

I've been gluten-free for right at 6 years now -- in fact that anniversary will be coming up in about a week -- and to those of you who have just started in the past year or two, you can't imagine how much easier it is now. The allergen law isn't perfect, but it's so much better than before. And I think the gluten standard will improve things, as well.

This is the group that pushed for and got the allergen law. This is probably where your comments should go.

Open Original Shared Link

richard

If you go on that website and click on adocacy you can sign up for allerts to nottify you when our help is needed. Just signed up. There is a form you write what you want and they tell you where to send it!

Thanks for the great information and for reminding me how much harder it would have been to read lables a few years back!

mommyagain Explorer

I agree that things are better now than they used to be regarding labeling of allergens... BUT, for those of us who get glutened from shampoo or hairspray, obviously the 20ppm limit is too high!

As for it being unreasonable to have separate facilities, there are companies that do. We pay more for their products, but we know they are safe. I, for one, am willing to pay more for something that I KNOW was produced in a gluten-free facility.

To be perfectly honest, I live in a shared facility, because I am the only one in the family who eats gluten-free. But, we are very careful about cross-contamination and so far (*knock on wood*) I have not been glutened at home.

I'm just upset that companies like Rice Dream are allowed to list their Rice Milk (processed with barley) as gluten-free, even though it has made a LOT of people who are sensitive to gluten sick! They don't even have to list barley as an ingredient because it is just processed with barley... which to me means it touches it... which means gluten can get in the milk.

Oh well, I found out about the labeling law too late to have any say in it...

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    2. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    3. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    4. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    5. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,278
    • Most Online (within 30 mins)
      7,748

    Pinkwells19
    Newest Member
    Pinkwells19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
×
×
  • Create New...