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 Celiac.com!
    eNewsletter
    Donate

What Is The Gluten-Free Standard?


xMichellex

Recommended Posts

xMichellex Rookie

I believe I am getting better at reading labels. I thought that to be safe it was best to stick to stuff that has been labeled

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



psawyer Proficient

At the moment, in the US, there is no legal definition of "gluten-free."

Click here to go to a discussion a few months ago.

Link to comment
Share on other sites
xMichellex Rookie

At the moment, in the US, there is no legal definition of "gluten-free."

Click here to go to a discussion a few months ago.

Peter,

I read the entire post. Thanks for that link. I am now truly bummed. This is discouraging and frightening.

Since you are so well informed on this topic, may I ask you another question?

Say that I consume 3 different produts in one day and each tests at 20ppm. Does that mean that I just consumed 60ppm? So perhaps I am not reacting to one product but rather to an accumulation?

Link to comment
Share on other sites
psawyer Proficient

Michelle,

Lots of people get hung up on ppm, which is vexing because it really is a meaningless number. Like percentages, which ppm is a form of, most people have trouble understanding what they really mean.

Here is an example from the percent world. You make $20 per hour working for me. Times are really tough, so I insist that you take a 50% wage cut just to keep your job. 50% of $20 is $10. Your new wage is $10 per hour. Oh, wait, we just got a huge contract from a new customer. I can give you a 50% increase in your wages. That reverses the cut, right? Wrong. 50% of $10 is $5 and your new wage is $15 per hour.

Tests can detect 20 ppm or 5 ppm or some other detection threshold. A product tested for 20 ppm may, in fact, contain 19 ppm or 0 ppm, or any amount in between.

Let us assume that we have two baked products. One is tested for 5 ppm and the other for 20 ppm. Let us also assume that each is right at the detection limit, say 4.9 ppm and 19.9 ppm--that is not a valid assumption, but let's run with it for the moment.

Let's eat a 10 gram serving of the 20 ppm tested product. That's 196 micrograms of gluten.

Now, let's eat a 40 gram serving of the 5 ppm tested product. Holy cow! We still ate 196 micrograms of gluten.

What matters in terms of the gluten-free diet is the total amount of gluten ingested, not whether it came from dilute or concentrated sources. And I cannot repeat enough times, tested to X ppm does not mean contains X ppm. The content is less and is often far, far less than the test threshold.

I hope that helps. If not, let me know, but I didn't want to bury you in mathematics. It was my major...

Link to comment
Share on other sites
xMichellex Rookie

Michelle,

Lots of people get hung up on ppm, which is vexing because it really is a meaningless number. Like percentages, which ppm is a form of, most people have trouble understanding what they really mean.

Here is an example from the percent world. You make $20 per hour working for me. Times are really tough, so I insist that you take a 50% wage cut just to keep your job. 50% of $20 is $10. Your new wage is $10 per hour. Oh, wait, we just got a huge contract from a new customer. I can give you a 50% increase in your wages. That reverses the cut, right? Wrong. 50% of $10 is $5 and your new wage is $15 per hour.

Tests can detect 20 ppm or 5 ppm or some other detection threshold. A product tested for 20 ppm may, in fact, contain 19 ppm or 0 ppm, or any amount in between.

Let us assume that we have two baked products. One is tested for 5 ppm and the other for 20 ppm. Let us also assume that each is right at the detection limit, say 4.9 ppm and 19.9 ppm--that is not a valid assumption, but let's run with it for the moment.

Let's eat a 10 gram serving of the 20 ppm tested product. That's 196 micrograms of gluten.

Now, let's eat a 40 gram serving of the 5 ppm tested product. Holy cow! We still ate 196 micrograms of gluten.

What matters in terms of the gluten-free diet is the total amount of gluten ingested, not whether it came from dilute or concentrated sources. And I cannot repeat enough times, tested to X ppm does not mean contains X ppm. The content is less and is often far, far less than the test threshold.

I hope that helps. If not, let me know, but I didn't want to bury you in mathematics. It was my major...

Peter,

You didn't bury me. You have just set me straight. Since we are dealing with arbitrary numbers and voluntary labeling and testing, there is no way to truly know what is being ingested.

The safest bet (for me) is the whole foods approach, at least until I figure things out. I just wish that would happen soon.

Peter, your information has been invaluable. I thought this website was a great resource, but now I see that the moderators are a big part of that. Thanks again.

Link to comment
Share on other sites
eatmeat4good Enthusiast

Michelle,

He buried me.

But your first sentence cleared it up.

We can't know in the United States, how much gluten we are eating, if we choose to eat gluten free products.

Is that about it?

Whole foods for me then.

I only understood the words arbitrary plus voluntary equals cross contamination for those who are sensitive.

Thank you both.

I thought gluten free was gluten free.

Yikes :blink:

Link to comment
Share on other sites
tarnalberry Community Regular

Here is an example from the percent world....

Peter, that was an EXCELLENT example/walkthrough!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I often react to gluten free foods. It helps to check if they are made in a gluten free facility or on gluten free lines. After many occasions of getting sick you figure out which companies work out better. There are also various certifying programs and it can help to check if the food is certified by one of the better ones. It takes a lot of trial and error to figure it all out. It isn't the same for all celiacs. Our tolerances seem to vary widely.

Link to comment
Share on other sites
jerseyangel Proficient

I often react to gluten free foods. It helps to check if they are made in a gluten free facility or on gluten free lines. After many occasions of getting sick you figure out which companies work out better. There are also various certifying programs and it can help to check if the food is certified by one of the better ones. It takes a lot of trial and error to figure it all out. It isn't the same for all celiacs. Our tolerances seem to vary widely.

This is what it comes down to for me also.

Link to comment
Share on other sites
xMichellex Rookie

I often react to gluten free foods. It helps to check if they are made in a gluten free facility or on gluten free lines. After many occasions of getting sick you figure out which companies work out better. There are also various certifying programs and it can help to check if the food is certified by one of the better ones. It takes a lot of trial and error to figure it all out. It isn't the same for all celiacs. Our tolerances seem to vary widely.

That is probably the way to go, but only if you don't mind being your own guinea pig. I'm so new at this and I feel so raw still that I am afraid of getting sick. Partly because I am in grad school and getting sick can cause a lot of trouble there for me and partly because I have just barely begun to taste the freedom from being sick.

Link to comment
Share on other sites
dilettantesteph Collaborator

That is probably the way to go, but only if you don't mind being your own guinea pig. I'm so new at this and I feel so raw still that I am afraid of getting sick. Partly because I am in grad school and getting sick can cause a lot of trouble there for me and partly because I have just barely begun to taste the freedom from being sick.

I totally understand. In that case, eat a grain free whole foods diet. Wash everything carefully. Peel what you can. You can try more things later when you are up to it.

Link to comment
Share on other sites
jeannieknits Rookie

this thread is perfect....peter your information is invaluable!

I have been reacting lately to "gluten free" breads and now I'm thinking I know why.

bummed out, but informed.

thank you.

Link to comment
Share on other sites
xMichellex Rookie

I totally understand. In that case, eat a grain free whole foods diet. Wash everything carefully. Peel what you can. You can try more things later when you are up to it.

That is very sound advice. It took more than a couple of days to make me so sick, then it will certainly take more than a few to get me better. For now, I am just going to keep it simple.

Good idea about the peeling. I always thought that the extra fiber you get from skins is healthy, but perhaps for now, at least, I should take your advice. Thanks!

Link to comment
Share on other sites

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. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    2. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    3. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

    4. - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

    5. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...