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

Gluten Free Food But Says Less Than 20 Ppm Gluten? What Does That Mean?


sharilee

Recommended Posts

sharilee Rookie

I was diagnosed with celiac disease in late February 2012 after a positive biopsy. The symptoms got better at first then returned. So next step I cut out lactose and soy, still having symptoms. This weekend I was eating blue diamond crackers which were label gluten free but noticed on the box in very small print, tested to contain less than 20 ppm of gluten. So this got me wondering if the reason I am still having symptoms is because some of the labeled "gluten free" items I have eaten are not in fact truly gluten free. For the most part I have been avoiding any processed foods but with my work schedule it is a lot easier to pack lunch that does not have to be kept in the frig and snacks that are labeled gluten free like these crackers, rice cakes, etc. The processed gluten free labeled foods are a lot easier to take for lunch and snacks on work days.

So I am wondering if I am possibly still experiencing symptoms because I am getting gluten from these foods.

Any thoughts?


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Yes, it's possible you are reacting. Not everyone tolerates the traces of gluten in grain-based foods. The proposed FDA standard is <20 ppm, which is why Blue Diamond and many other brands label gluten-free at <20 ppm. Even great GFCO certified brands like Udi's are only guaranteeing <10 ppm.

It's also possible you are reacting to all dairy rather than just lactose. There are a fair number of us who are casein sensitive. Casein sensitivity is probably more common than being unable to tolerate <20 ppm foods.

The easiest way to check (and I know it's a pain because I eat this way) is to get rid of all processed foods for a bit and only eat food you cooked from naturally gluten-free food. I carry a 6-pack sized, soft sided cooler with an ice pack to work every day. It wasn't expensive at all and it works well. Using a cooler makes easy to be able to bring foods that need to be kept cold like dinner leftovers, hard-boiled eggs, cheese, or sliced veggies.

psawyer Proficient

A food which contains absolutely no gluten whatsoever will test as less than 20 ppm. Don't assume that the test sensitivity has anything to do with the actual content. Testing can not prove zero, and the more sensitive the test, the more it costs to do. Many manufacturers test at 20 ppm, as it seems to be a reasonable compromise. The primary reason for the testing is to detect accidental contamination.

Skylark Collaborator

A food which contains absolutely no gluten whatsoever will test as less than 20 ppm. Don't assume that the test sensitivity has anything to do with the actual content. Testing can not prove zero, and the more sensitive the test, the more it costs to do. Many manufacturers test at 20 ppm, as it seems to be a reasonable compromise. The primary reason for the testing is to detect accidental contamination.

True, but the threshold of the R5 elisa, the most common commercial gluten test, is <3 ppm. Udi's, Kinnikinick, and anyone GFCO certified is using a cutoff of <10 ppm. IMO the <20 ppm proposal in the FDA has nothing to do with safety for people with celiac or test limitations and everything to do with food conglomerate lobbying.

But that's neither here nor there. We have had board members who didn't recover until they went to a diet that consists of only naturally gluten-free foods. Marku Makki has mentioned running across people who were similarly sensitive in his peer-reviewed research.

sharilee Rookie

Thank you for the information. I am going to try an all natural gluten free diet and also eliminate Casein and see what happens.

Skylark Collaborator

Good luck! Be sure you're off oats as well. Some people react to oats as if they were a gluten grain. There's recent research suggesting corn can be an issue for some folks as well.

sharilee Rookie

Good luck! Be sure you're off oats as well. Some people react to oats as if they were a gluten grain. There's recent research suggesting corn can be an issue for some folks as well.

Thank you again. Last night I worked on a grocery list of naturally gluten free foods and worked out some menus for breakfast, lunch and dinner. Today after work going to the grocery store and stocking up. I still need to double check my vitamin supplements and medications, I know they are gluten free but going to check for soy and other possible triggers.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I am one of the people on this board who did not get all the way better until I stopped eating most processed foods. I have even had problems with packaged naturally gluten free items. I was fortunate to have a GI doctor who was familiar with celiacs who react to very low levels of cc, so I found out about it from him. At that time, almost 5 years ago, there was very little information out there about it. This forum now has a super sensitive section which deals with that condition.

sharilee Rookie

I am one of the people on this board who did not get all the way better until I stopped eating most processed foods. I have even had problems with packaged naturally gluten free items. I was fortunate to have a GI doctor who was familiar with celiacs who react to very low levels of cc, so I found out about it from him. At that time, almost 5 years ago, there was very little information out there about it. This forum now has a super sensitive section which deals with that condition.

Thank you for the information, I will check out the super sensitive section.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.