Jump to content

  • 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

By Guest thatchickali
in Coping with Celiac Disease

Recommended Posts

Guest thatchickali
Guest thatchickali
Posted

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
loco-ladi
Posted

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
mommyagain
Posted

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
kbtoyssni
Posted

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
Ridgewalker
Posted
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
blueeyedmanda
Posted

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
psawyer
Posted

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
mama2
Posted

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
ptkds
Posted

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
tarnalberry
Posted
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
mama2
Posted

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
nmw
Posted

Open Original Shared Link

It's all right here folks.

tarnalberry Community Regular
tarnalberry
Posted
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
tarnalberry
Posted
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
nmw
Posted
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
lovegrov
Posted

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
mama2
Posted
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
mommyagain
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.