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

Gluten Free Does Not Mean Gluten Free? Did You Know...

meatslayer

Recommended Posts

meatslayer Newbie
meatslayer
Posted

To be labeled Gluten free the FDA standard is less than 20 ppm. At that level, those with a gluten allergy will not have a reaction. However it becomes a little grayer when you are talking about Celiac. For this reason, the FDA (USA) and the CFIA (Canada) are currently reviewing the standard.

You guys know that? Anyone have any more info? 20ppm is a very small amount (tiny) To most here I would think that a Gluten free label means Gluten free, but not so. I wonder at what PPM it effects a Celiac? Anyone know?

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

Celiac.com Sponsor (A8-M):


jackay Enthusiast
jackay
Posted

You guys know that? Anyone have any more info? 20ppm is a very small amount (tiny) To most here I would think that a Gluten free label means Gluten free, but not so. I wonder at what PPM it effects a Celiac? Anyone know?

Meatslayer,

It is different for everyone. Everyone's body reacts differently. That is why there are so many different symptoms. We don't all have the same symptoms either.

Jackay

meatslayer Newbie
meatslayer
Posted
  • Author

Meatslayer,

It is different for everyone. Everyone's body reacts differently. That is why there are so many different symptoms. We don't all have the same symptoms either.

Jackay

Very true indeed, thanks for pointing that out.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Yet another complication to the mystery that is celiac. 20ppm is really really really tiny, but... you never know. Celiac can present with so many symptoms, so you eat that stuff with 20ppm and you get a sinus infection. Is it due to celiac or just a sinus infection? I was told by a doc who is pretty knowledgable that it's very hard to truly be gluten free because it's just everywhere.

Jestgar Rising Star
Jestgar
Posted

Yet another complication to the mystery that is celiac. 20ppm is really really really tiny,

unless you eat 40 of them.....

DougE Rookie
DougE
Posted

Another complication for us celiacs with no appreciable symptoms. How do we know when we ate too much gluten?

tarnalberry Community Regular
tarnalberry
Posted

Most studies suggest that 20ppm in moderate amounts of most foods won't cause damage to a celiac's intestines (or elevate antibody levels detectably).

Nothing, medically speaking, is true for everyone, of course.

And *some* testable (0 is NOT testable) limit has to be set if there is going to be a industrial use for the term.

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

At this point the U.S. has no official gluten-free standard, although 20 ppm is definitely being considered. 20 ppm probably has little to no apparent effect on most people with celiac, but some definitely react. As for having zero percent gluten, no test can determine that, although it can go a good bit lower than 20.

richard

psawyer Proficient
psawyer
Posted

And *some* testable (0 is NOT testable) limit has to be set if there is going to be a industrial use for the term.

What Tiffany said, as usual, is right on the money. :)

kareng Grand Master
kareng
Posted

unless you eat 40 of them.....

I understand what Tiffany said. There has to be a number, something to measure. We then have to be sure we don't eat "40" like Jess said. We will have to be vigilant to what a serving is per the packaging, not what we would usually eat. I know that what I think is a serving of cereal in my bowl is usually closer to 2. I think this problem has come up with transfat as less then 1 unit of fat per serving is considered 0. But everyone usually eats 4 "servings" thus getting 2 units of fat & it isn't really transfat free. Maybe I'll just eat Puppy's gluten-free dog food - it looks like a really balanced diet.

  • 2 weeks later...
bittykitty Rookie
bittykitty
Posted

I understand what Tiffany said. There has to be a number, something to measure. We then have to be sure we don't eat "40" like Jess said. We will have to be vigilant to what a serving is per the packaging, not what we would usually eat. I know that what I think is a serving of cereal in my bowl is usually closer to 2. I think this problem has come up with transfat as less then 1 unit of fat per serving is considered 0. But everyone usually eats 4 "servings" thus getting 2 units of fat & it isn't really transfat free. Maybe I'll just eat Puppy's gluten-free dog food - it looks like a really balanced diet.

Sometimes this is why it's wise to just avoid processed foods, no matter what the label says.I've reacted to a lot of stuff that proudly screamed"gluten free"on the package.You really don't know who handled it,where it was manufactured, and until federal guidelines become a little stricter, it's easy for companies to cut corners and still be in that gray area.Yeah, we all like convenience foods(hell in America it is a way of life),but you have to make the choice as to whether or not taking the chance is worth 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
      130,709
    • Most Online (within 30 mins)
      7,748
    Mali
    Newest Member
    Mali
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New to gluten-free

      By trents · Posted

      Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.
    • QueenBorg
      New to gluten-free

      By QueenBorg · Posted

      Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you. 
    • knitty kitty
      Refractory celiac disease

      By knitty kitty · Posted

      @Grahamsnaturalworld, It's never too late.   Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy. Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.   Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.   Have your doctors checked for all these?   I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/
    • Grahamsnaturalworld
      Refractory celiac disease

      By Grahamsnaturalworld · Posted

      Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.
    • trents
      New to gluten-free

      By trents · Posted

      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
×
×
  • Create New...