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 Grains Not So Gluten Free


T.H.

Recommended Posts

T.H. Community Regular

I know some really sensitive celiacs here have mentioned finding wheat in some of their gluten-free grains. Now a study released in June is bearing out their worries, big time:

Open Original Shared Link

The pertinent information, I thought, was this, said re: gluten testing of a number of flours and grains:

"...The worst offenders included soy flour, which had 2,925 parts per million of gluten, sorghum flour, which was contaminated with 234 parts per million of gluten, and two different brands of millet flour, which contained up to 327 parts per million of gluten. Millet whole grain, buckwheat flour and white rice flour also contained detectable levels of gluten..."

No brand names were listed in the study itself, and only about 22 different flours/grains were tested, overall. But argh, how frustrating! Makes me worry all over again.

Time to finally buy those home gluten test kits. :(


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



Celiac.com Sponsor (A8-M):



sb2178 Enthusiast

I think this was posted up a while ago, but I have been wondering if my problems with sorghum flour are not the sorghum but rather contamination. Hard to know, and frustrating as I bought rather a lot of it. It also explains why some people react to processed gluten-free foods...

I have started washing whole grains a lot more carefully (millet, quinoa, rice, beans) but you can't wash flour. Sigh. I think it's probably a sign that I should just give up pancakes and cookies for a while.

TaniaR Newbie

I am one of those people who are VERY sensitive to gluten. My sisters and I can only test to 5 parts per million or less of gluten in food and finding flour is very very hard. Depending on what you want to make, Kinnikinnick seems to make me the least sick- with flours I've only used their pancake and cake mix ones but they do make me the least sick so if your looking for something I would recommend that brand and they're also pretty tasty :)

dilettantesteph Collaborator

You can wash, dry, and grind your own flour. It isn't that hard. I started with an inexpensive coffee grinder and then moved to a more expensive flour mill.

RiceGuy Collaborator

I have found that making my own buckwheat flour in a coffee grinder works fairly well, compared to most grains. The only brand of buckwheat flour which hasn't glutened me is from Open Original Shared Link. They have a facility dedicated to milling buckwheat, which they grow themselves. So no CC from transporting the grain.

All other flours I buy from Open Original Shared Link, and so far so good. Last I tried, I can't use their gluten-free buckwheat though.

I've gotten glutened by every bag of flour I've tried from Arrowhead Mills. Took a while to track down what was getting me too. It's really disappointing when you cannot trust a gluten-free claim on a package.

T.H. Community Regular

Oh, do you have a good company that you get whole grains from? I can't use flour mixtures usually because I have problems with some non-gluten grains as well, but if you have some whole grains that were very safe for you, I would love to hear. Thank you for the info!

T.H. Community Regular

What brands for whole grains have you found that have been good for you, in the gluten free sense? Have you had any trouble with the whole grains?

You can wash, dry, and grind your own flour. It isn't that hard. I started with an inexpensive coffee grinder and then moved to a more expensive flour mill.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Oh thank you so much for the detailed information! I have been wondering about Arrowhead Mills flours' safety with my kids a couple times. I will definitely be checking out these farms. Very much appreciated.

Do you grind all your own flours? If you do, would you have any advice on what types of mills/coffee grinders work for what grains? I could use any advice you could give. :)

I have found that making my own buckwheat flour in a coffee grinder works fairly well, compared to most grains. The only brand of buckwheat flour which hasn't glutened me is from Open Original Shared Link. They have a facility dedicated to milling buckwheat, which they grow themselves. So no CC from transporting the grain.

All other flours I buy from Open Original Shared Link, and so far so good. Last I tried, I can't use their gluten-free buckwheat though.

I've gotten glutened by every bag of flour I've tried from Arrowhead Mills. Took a while to track down what was getting me too. It's really disappointing when you cannot trust a gluten-free claim on a package.

BethM55 Enthusiast

Oh thank you so much for the detailed information! I have been wondering about Arrowhead Mills flours' safety with my kids a couple times. I will definitely be checking out these farms. Very much appreciated.

Do you grind all your own flours? If you do, would you have any advice on what types of mills/coffee grinders work for what grains? I could use any advice you could give. :)

I use my VitaMix to grind grains into flour. Easy, quick, efficient, and easy to clean. vitamix.com

dilettantesteph Collaborator

I'm afraid that even the best sources of whole grains that I have found sometimes have gluten containing grains in them. I look through them and remove anything suspicious before my washing and drying procedure.

That being said, I suggest Twin Valley Mills for sorghum. They clean their harvester for 2 days before using it to harvest sorghum. I would still sort, though.

  • 1 year later...
tgp2312 Newbie

I have found that making my own buckwheat flour in a coffee grinder works fairly well, compared to most grains. The only brand of buckwheat flour which hasn't glutened me is from Open Original Shared Link. They have a facility dedicated to milling buckwheat, which they grow themselves. So no CC from transporting the grain.

All other flours I buy from Open Original Shared Link, and so far so good. Last I tried, I can't use their gluten-free buckwheat though.

I've gotten glutened by every bag of flour I've tried from Arrowhead Mills. Took a while to track down what was getting me too. It's really disappointing when you cannot trust a gluten-free claim on a package.

I am glad to have this confirmed at last; Arrowhead Mills buckwheat, which they claim is gluten free, made me the sickest I have ever been and the product tested positive for gluten on an EZGluten home test. Complaints to the company have so far gone unanswered. I have even complained about this company to the FDA.

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. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.