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

I'm Pissed!


marinewife

Recommended Posts

marinewife Newbie

I have been trying so hard to eat gluten free. It is a royal pain to look at every box for ingredients only to find out that gluten ingredients may not disclosed at all, or it was manufactured where it contains wheat that can contaminate.

I make gluten free pancakes for my kids only to find out the syrup does not disclose any wheat containing ingredients (mrs butterworths). So now I have to deal with feeling like crap, and my son jumping off the walls today.

This is ridiculous that we have to call or email manufacturers to make sure we are safe. I am new to this and it is very overwhelming. Learning which foods you can or can not buy is frustrating. Manufacturers can change their ingredients, or manufacturing processes unknown to us if they want to.

For generations this has been in my family (but undiagnosed). People need to know that this exists and I think it is more prevalent than people think, and just as important, we have the right to know what we are ingesting. Isn't that the reason why the FDA mandates (ha ha) having ingredients labeled?

Where is the FDA on this? Nothing will change unless we speak out. Is there a board for lobbying or another forum for lobbying issues?

Thank you for letting me rant.

:angry: :angry:


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

You are right, it is a royal pain in the neck. That is why naturally gluten-free foods that are as unprocessed as possible are the safest foods for us.

You may want to use pure maple syrup and/or apple sauce on your pancakes to be safe.

I hope you and your son will feel better soon.

psawyer Proficient

By law, wheat must be labeled. This is a law passed by Congress, which took effect more than two years ago, known as FALCPA (Food Allergy Labeling and Consumer Protection Act). It requires the clear disclosure of the top eight allergens: wheat, milk, soy, peanuts, tree nuts, seafood, egg and shellfish. The disclosure can be either in the ingredients list itself, or in an "Contains:" message. Some manufacturers do both.

Unfortunately for us, the law does not cover rye, barley and oats. I have never seen rye hidden, but barley can lurk.

marinewife Newbie
By law, wheat must be labeled. This is a law passed by Congress, which took effect more than two years ago, known as FALCPA (Food Allergy Labeling and Consumer Protection Act). It requires the clear disclosure of the top eight allergens: wheat, milk, soy, peanuts, tree nuts, seafood, egg and shellfish. The disclosure can be either in the ingredients list itself, or in an "Contains:" message. Some manufacturers do both.

Unfortunately for us, the law does not cover rye, barley and oats. I have never seen rye hidden, but barley can lurk.

Peter,

Thank you for the clarification.

Does the law require a disclosure if the product was manufactured in a facility using the same machines with wheat containing products? I have eaten potato chips and was glutened, not sure with what, but cross contamination had to definitely be an issue.

Anything anyone ingests should be labeled and required by law. Celiac or not. I don't care if its in minimal amounts or considered natural. (What products are considered natural?)

Why isn't rye, barley, and oats by law disclosed?

If 1/133 Americans have Celiac disease, this is enough to question why food labeling is not available for celiacs.

Why do we not have the rights to have food labeled? This tells me we are clearly not important enough, and/or we have not raised any eyebrows.

If we had an allergic reaction where it was immediately life threatening after ingesting, you bet it would be labeled, but because gluten destroys our intestines, we become malnourished, and basically die a slow death (with many other symptoms that are too many to list), it is not important to the FDA or the government...it is not priority.

This board is great. There are so many knowledgeable people. I have read so many posts, and I can relate to soooo many. It is a great feeling. I just wish labeling could be easier. I am not asking to have a neon label that says gluten, but to be able to look at the ingredients and "know" I am getting what the label says. Is it a lot to ask?

By the way, I do not have Trader Joes or Whole Foods near me. The closest health food store is very small, and very expensive and about an hours drive from me.

psawyer Proficient

Some companies will state on the label if the facility or equipment is shared. Such labeling is voluntary.

Open Original Shared Link

There are a number of companies/brands that have a voluntary policy of clearly disclosing all gluten sources. They include:

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hershey, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Smucker, Stokely's, Sunny Delight, T Marzetti, Tyson, Unilever, Wishbone, Yoplait, Zatarain's.

That list is not exhaustive. For example, it does not list every brand owned by Kraft and Unilever, but the policy does apply to every brand they own, even if it is not on this list.

blueeyedmanda Community Regular

Also Walmart's Great Value brand labels products gluten free if they apply.

If you live in an area which has a Wegmans Food store, they also label all their house brand gluten free. It is a "G" in a circle on the package. A very big help.

With buying the Walmart or Wegmans brands it saves money too.

tarnalberry Community Regular

the reason that not every single minor ingredient (less than a particular percentage) has to be labeled (outside of the allergen labeling laws) is to protect a manufacturers proprietary information (the ingredients/recipe of their products). not saying it's not a problem for us, but that's the reason they fight it. (that, and because they will change from time to time when they have supply issues that require they either make small reformulations or shut down a line - the latter being not economically viable.)


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



Celiac.com Sponsor (A8-M):



Generic Apprentice

For the record the F.D.A. is working on a law to label gluten containing foods. I have personally taken the survey of what I consider gluten free etc. So it is in the works, just hasn't happened yet.

hathor Contributor

Barley and rye don't have to be labeled because the statute didn't specify them. Why is an interesting question.

Another little wrinkle I discovered recently about the allergen labeling law. It only applies to food regulated by the FDA. Food regulated by the USDA is not covered. That agency has been asked by at least one member of Congress and one public interest group to have a rulemaking and adopt rules similar to what the FDA has. The USDA has said that they will and we are sitting here two years later and they haven't even started the rulemaking yet, last I looked.

I don't know if the manufacturers of USDA-regulated food have been voluntarily following the FDA rules or not, because I don't eat any of that stuff.

Kamper Newbie

According to Open Original Shared Link (see link for details.) The FDA is said to announce their decision on the "Gluten Free" label around August 2, 2008.

Phyllis28 Apprentice
You are right, it is a royal pain in the neck. That is why naturally gluten-free foods that are as unprocessed as possible are the safest foods for us.

You may want to use pure maple syrup and/or apple sauce on your pancakes to be safe.

I hope you and your son will feel better soon.

I follow Ursa Major's strategy for buying food. I only use pure maple syrup. The less ingredients and processing in a product is better. Very few of the products in my cupboards or refrigerator, that are not labeled gluten-free, have more than four ingredients and all the ingredients are easily indentfiable as gluten free.

Hope everyone gets well soon.

tarnalberry Community Regular
The less ingredients and processing in a product is better.

We were at the store yesterday getting me some orange juice. (I'm sick... it's pretty much the only time I drink juice, and I have to be pretty darn sick to drink juice...) On the walk to the store, my husband and I were talking about soup, as he's getting sick too, and we like to have chicken soup when we're sick, but I hate cooking when I'm sick, especially if the kitchen's already dirty (and whoooboy, is it!). He's a very ... discriminating ... eater (he hates the word picky... he's a supertaster, so I don't blame him), but he likes my homemade Open Original Shared Link (that's an old version, anyway), and I noted that he might like the Progresso soup. We looked at the ingredients when we got to the store, and oh my, the list! I put the can back, and joked "that's full of all kinds of crap, I'm not letting you eat that, I'll make you soup!".

Of course, now I'm on the hook for making soup tonight. :)

melrobsings Contributor

it's not just a pain in the neck, it's a pain in the tummy!!! :rolleyes::P:D:)B)

gfp Enthusiast
the reason that not every single minor ingredient (less than a particular percentage) has to be labeled (outside of the allergen labeling laws) is to protect a manufacturers proprietary information (the ingredients/recipe of their products). not saying it's not a problem for us, but that's the reason they fight it. (that, and because they will change from time to time when they have supply issues that require they either make small reformulations or shut down a line - the latter being not economically viable.)

Hmm... that's what they say ... somehow I doubt that with today's instrumentation ingredient X can be hidden for long ... hence the problem.. The sum total of money spent analysing food for allergens vs the sum total of money spent analysing food to make production cheaper ...

For the record the F.D.A. is working on a law to label gluten containing foods. I have personally taken the survey of what I consider gluten free etc. So it is in the works, just hasn't happened yet.

Unfortunately this will probably end up being so watered down and toothless as to be useless.

Laws already exist here in the UK for labelling allergens but a single manufacturer has yet to be prosecuted yet plenty flaunt the law.

As a parallel, for many years it was illegal to open most stores on a Sunday yet most supermarkets etc. opened anyway ... they simply paid a fine each week and made more money than they paid. Meanwhile they sacked employees who didn't want to work Sundays .. even though it was illegal for them to be working .. but of course how can they complain when they are not even working legally.

Food companies will do the same.... they will label when and if convenient and when it goes wrong they will (if it ever gets to that) pay fines but most likely pay out of court damages. If anyone does get in trouble over this it will not be the board of directors of Kraft or Unilever but some low down employee who gets sacked to make it look like they give a damn.

The companies themselves make sure that the chain is not auditable .. for instance if they order a chemical additive they will take the one that has no gluten statement above the one that say's gluten-free .or "may contain gluten".. this way if anything goes wrong they are covered ...

Never knowingly hiding gluten means less than nothing... it just means the company will go to some length not to know... and it is not even close to them saying they test/screen their product lines for gluten... it just means "don't ask, don't tell" ...

Lets face it if these companies cared one iota for public health (and I'm not saying they should .. just challenging the precept they do) then 90% of their product lines would be removed...

The major food companies made a policy decision as a cartel to provide food that appears to be healthy. There is a link from this board somewhere to the minutes of one of their annual meetings where they quite plainly say that they need to make the consumer think the food is healthy by re-labelling not by changing the ingredients.

darlindeb25 Collaborator

I agree totally gfp! These multimillion dollar companies are not afraid of little fines, it's no big deal to them. I agree,

Never knowingly hiding gluten means less than nothing... it just means the company will go to some length not to know... and it is not even close to them saying they test/screen their product lines for gluten... it just means "don't ask, don't tell" ...
this is so true, and I do not trust all these companies, simply because they say they will never hide gluten.

I continue to stand behind my believe that a law is only as good as the police-ing behind it. Until they start making these companies conform to the law, then it doesn't matter if the law is out there. I know there are those who actually think this law is being strictly enforced, but I do not believe it. I am still seeing labels out there that look suspicious to me and the law has been in effect for how long now????

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    2. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

    3. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    4. - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,287
    • Most Online (within 30 mins)
      7,748

    Desert Ratt
    Newest Member
    Desert Ratt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
×
×
  • 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.