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:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    Moooey
    Newest Member
    Moooey
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.