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 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
      129,909
    • Most Online (within 30 mins)
      7,748

    Patty g
    Newest Member
    Patty g
    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

    • Gary Libby
      Thank-you I will ask the doctor about this.  This is all new to me I'm feeling ill every day and losing weight is this part of coeliac? 
    • MelissaClinPsyD
      Thank you so much for your response kitty that is helpful to hold in mind. I am also doing a review on lived experiences of coeliac disease so your blog would be incredibly valuable for me to review, please can I have the link to it?
    • knitty kitty
      @Shining My Light, Yes, celiac is spelled differently in Great Britain.  Yes, please do consider us as part of your support circle.   I had a serious Vitamin D deficiency, too.  I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L.  Mine was in the single digits.  I had been in declining health for years without answers.  I had developed hormone problems and clinical depression among other symptoms.  I corrected my Vitamin D deficiency with high doses to get my level up quickly.  Yes, it's safe.  Here's some studies done on high dose Vitamin D. https://pubmed.ncbi.nlm.nih.gov/34737019/ https://pubmed.ncbi.nlm.nih.gov/39125420/ https://pubmed.ncbi.nlm.nih.gov/35470105/ https://pubmed.ncbi.nlm.nih.gov/30611908/ My Vitamin D deficiency was just the tip of the deficiency iceberg.  I was deficient in the B vitamins, too.  Celiac Malabsorption affects all the vitamins and minerals, not just one.  Here are some articles about how the B vitamins and even Vitamin D help lower anxiety... https://pubmed.ncbi.nlm.nih.gov/33848753/ https://pubmed.ncbi.nlm.nih.gov/35156551/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • Shining My Light
      @trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against.  I’m going to give your article a thorough read. My support in my circle is very small at the moment.  @knitty kitty I think before EGD I would like to do the DNA test. I’m going to start keeping a better journal also.  I’ve read a crazy amount of these “articles” - these two I’ve not seen. Some articles spell celiac differently. Thank you for sharing! I’m gonna dive into those.   I started seeing the functional medicine doctors from fluctuations in my hormones and major anxiety. Recently I realize it’s mostly health anxiety also so this is more challenging to depict real from imaginary thus all the research and the back and forth. I know anxiety to be a common symptom in perimenopause. I’ve fought it my whole life however. Likely due to lots of different trauma but seeing her was my last ditch effort to try something to avoid SSRIs, HRT, etc. She told me not to blame everything on my hormones when there could be an underlying problem, so she ran some tests to see if anything stood out. The TGG tests stood out.  I do find it very interesting now that I think about it that I don’t desire bread, pasta and pizza. Sometimes yes, but mostly no. I guess I didn’t give that much thought. Also didn’t realize that those foods do contain more gluten than the tortillas and cake/baked goods. About 3 months ago I started ordering meal kits to make dinner easier. I went back over the menus that I picked. I have probably had bread and pasta a hand full of times over the last couple months prior to having that blood test. We used to get pizza every Friday and stopped doing that also. I’m all fairness about 2 months leading up to these blood tests I had less gluten containing foods than I thought.    I’ve been praying for wisdom. Thankful to find some counsel from people who I believe have dove harder into this than most doctors have. Thanks for all the advice. It’s appreciated more than you know. 💕
    • Alibu
      @knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.
×
×
  • Create New...