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

Anywhere To Buy G-f Grains In Bulk Quantities?


MarsupialMama

Recommended Posts

MarsupialMama Apprentice

Looking for a place to buy gluten-free grains in bulk that are 100% NOT cross contaminated. Does anybody know of a place?

I can't even trust the expensive little bags in the health food store that say gluten free because of the deceptive labeling. Besides the fact that we will go broke....

But my daughter is so sensitive to cross contamination that the slightest speck of dust will give her reactions for a month, and it takes a few months for her to gain her weight back. She is only 2 and we can take NO chances.

Where do dedicated gluten-free facilities buy THEIR grains?

4 out of 5 people in our family have gluten issues, so we need to order in large amounts, but my daughter is on her death bed practically with CC so there is no sense in buying bulk that is "potentially CC'd".

Any help would be a lifesaver right now!


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



Celiac.com Sponsor (A8-M):



JennyC Enthusiast

We buy Bob's Red Mill products, some of which in 25 pound quantities. Their products with a gluten free symbol are produced in a gluten free facility, but I don't know much about where they get their grains. Maybe you could try calling them.

Open Original Shared Link

kenlove Rising Star

We like Tom Sawyer Flour

Open Original Shared Link

really a great product from a dedicated facility. Not grains but for breads we think its the best

ken

Looking for a place to buy gluten-free grains in bulk that are 100% NOT cross contaminated. Does anybody know of a place?

I can't even trust the expensive little bags in the health food store that say gluten free because of the deceptive labeling. Besides the fact that we will go broke....

But my daughter is so sensitive to cross contamination that the slightest speck of dust will give her reactions for a month, and it takes a few months for her to gain her weight back. She is only 2 and we can take NO chances.

Where do dedicated gluten-free facilities buy THEIR grains?

4 out of 5 people in our family have gluten issues, so we need to order in large amounts, but my daughter is on her death bed practically with CC so there is no sense in buying bulk that is "potentially CC'd".

Any help would be a lifesaver right now!

lbd Rookie

You might consider cutting out grains altogether and filling her diet with fresh fruits, vegetables, nuts, and good meats instead. There are no grains that are essential to health, so if CC is such a huge issue for your little one, you might want to try that route. Best of luck to you and your little girl :)

Laurie

dilettantesteph Collaborator

I have been working on this same question for the last couple of months. I have been testing the grain I get with home test kits. With something like grain that you expect to be only contaminated on the outside you can use a large sample size and get down to 0.5 ppm or so. I haven't yet found a source for amaranth.

Sorghum grain you can get from Twin Valley Mills: www.twinvalleymills.com. It was also a lot less expensive than the contaminated sorghum I got elsewhere, only $15 for 30 lb! The shipping was a lot more $25. They grow other grains, but I think they keep the sorghum separate. They even sent a reply envelope with the self seal tape so you wouldn't have to lick it. It grinds up nicely in the coffee grinder and has an almost whole wheat taste.

Teff I got from The Teff Company: www.teffso.com. It is an exclusive teff place and it was $2.60 a pound including shipping for something like 25 lbs. Also grinds in the coffee grinder. Tested negative, < 0.5 ppm.

Millet from eden organic. It tested negative, < 0.5 ppm, but I don't think it is an exclusive facility.

Quinoa from Ancient Harvest. It is only $3 a lb delivered. Much cheaper than the health food store. Exclusive. There isn't even any wheat grown in the vicinity. Haven't tested.

Corn meal, I have ordered from Kinnikinnick. I haven't gotten it and tested it yet. It is an exclusive facility. The people who work there aren't even allowed to bring lunch. I tried grinding my own popcorn and broke the coffee grinder. America's Best did test negative, however.

I got wild rice from eden organic too and it tested negative.

Flax seed I get from Arrowhead Mills. Tested negative <0.5 ppm, but not an exclusive facility. Their corn meal tested positive, but only faintly, less than 5 ppm.

Buckwheat: Birkett Mills is an exclusive facility. www.birkettmills.com. They have Pocono and Wolffs brand which you may have seen in the health food store. I haven't tested it.

Montina is expensive, but you can get the flour in the health food store. It is an exclusive facility. www.montina.com, not tested.

Rice, I've been eating Lundbergs, haven't tested it.

I have been really enjoying cooking with whole grains. It really rounds out our diet and makes us feel more normal.

Hope that helps. I had a really hard time finding some of those places. If anyone knows of a good amaranth source, I'd love to hear of it. Nuworldamaranth tested positive about 0.5 ppm only so not a problem for people who are not sensitive, but not good for us.

I wonder how many gluten free dedicated facilities really use absolutely gluten free grain. (Based on how often their products have made me sick!)

Hope your daughter gets better.

RiceGuy Collaborator

I tend to agree that your daughter doesn't necessarily need grains, though I guess we're all different. Some can do without them and feel healthy. I found I needed them.

You can get many grains (and flours) at barryfarm.com, though I do not know about the CC. Many of their products are certified gluten-free, but I believe that pertains to the facility where they are processed, and not the field where they're grown. I'm sure they can tell you more than I can, if you call or email them.

Thanks dilettantesteph for the links! It's always good to have more sources.

MarsupialMama Apprentice

WOW!! This is awesome information! I feel like we have some kind of hope now!

I have not been able to find the source of my daughter's glutenings, but I just read a post about the playground where goldfish-contaminated hands get all over the playground equipment. Sheesh.......How do you even LIVE in this world and let kids be kids with celiac issues? It's like trying to live in this world without plastic! Good luck! It is nice to know that somehow, even though my Little has to avoid so many "normal" things, that she can at least eat at home in peace without getting sick.

Where do you get the at home testers? That would be a lifesaver around here!


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



Celiac.com Sponsor (A8-M):



lbd Rookie

You also might want to check out the "super-sensitive celiac" thread on this forum. Maybe there were some recommendations on there about brands/foods, etc. that were OK for these folks.

laurie

dilettantesteph Collaborator
WOW!! This is awesome information! I feel like we have some kind of hope now!

I have not been able to find the source of my daughter's glutenings, but I just read a post about the playground where goldfish-contaminated hands get all over the playground equipment. Sheesh.......How do you even LIVE in this world and let kids be kids with celiac issues? It's like trying to live in this world without plastic! Good luck! It is nice to know that somehow, even though my Little has to avoid so many "normal" things, that she can at least eat at home in peace without getting sick.

Where do you get the at home testers? That would be a lifesaver around here!

dilettantesteph Collaborator

Those tests have been very helpful around here. I get them at www.elisa-tek.com. They are called EZ Gluten. They are expensive. They are only sensitive to 10 ppm, which isn't enough for us. There are some things that you can do to make them more sensitive.

What you do is dissolve up your sample in a solution, wait for it to settle, take off some of the solution off the top and put it in a test tube with a stiff paper like thing which soaks up the solution.

To make it more sensitive you can usually get away with twice the sample size. If it is something like a grain or nuts which you expect to be only contaminated on the outside and don't dissolve, you can use 10 times the sample size. Whatever will fit into the tube. Then you shake to dissolve up any gluten that might be coated on the outside. That will make it sensitive to 1 ppm.

I also leave it to soak up the solution for twice as long. I figure it soaks up twice as much that way. Some one else here noticed that if you look at it again the next day, sometimes you will see a positive that wasn't there the day before. My son got sick one time from something that was tested on site at under 5 ppm. It barely tested positive with twice the sample size and looking at it hours later. He had only a small serving. Some celiacs are sensitive to very small amounts of gluten. I think fluorescent lights work best for looking at it, and I also use a magnifying glass.

They don't work for some types of tumeric. It causes a false positive. You need to watch sample size for acidic samples. Too much acid will cause a false positive. They also don't work soy sauce, the gluten pieces are broken up too much during the fermentation process and you get a false negative. That might also be true for vinegar, because I've gotten sick form vinegars that test negative with a 2X sample size.

Hope that all helps.

MarsupialMama Apprentice

Okay, so i know that certain spices (onion, garlic, etc) are are mixed with flour to keep them from sticking together, but do they do this with tumeric too? Or would it have gluten from c/c? I feel like there is nothing left for us to eat, simply because she is SO sensitive to the slightest thing. Like, how do people even live like this?

Thank you for the website - that's awesome. I think I will get a few to test some grains so we can get something. We are off dairy and soy too, so like the only thing she eats that can put weight on her is baked potatoes with lots of olive oil and nuts, which, who knows! Could be c/c'd.

By the way, I've heard that papaya can help digest the gluten. Not that I would feed my child gluten and then papaya with it to "cancel out" the gluten, but it has seemed to help her a lot. When we took her off gluten we started feeding her lots of papaya at that time (just for digestion...didn't know that it may help the gluten issue). Come to find out, she was still being glutened form Rice Dream and Quaker Rice Cakes, which will give her terrible reactions now, but I'm thinking the papaya may have helped neutralize it back then because we were seeing improvements in spite of the gluten.

Wow, what a life.

dilettantesteph Collaborator
Okay, so i know that certain spices (onion, garlic, etc) are are mixed with flour to keep them from sticking together, but do they do this with tumeric too? Or would it have gluten from c/c? I feel like there is nothing left for us to eat, simply because she is SO sensitive to the slightest thing. Like, how do people even live like this?

Thank you for the website - that's awesome. I think I will get a few to test some grains so we can get something. We are off dairy and soy too, so like the only thing she eats that can put weight on her is baked potatoes with lots of olive oil and nuts, which, who knows! Could be c/c'd.

By the way, I've heard that papaya can help digest the gluten. Not that I would feed my child gluten and then papaya with it to "cancel out" the gluten, but it has seemed to help her a lot. When we took her off gluten we started feeding her lots of papaya at that time (just for digestion...didn't know that it may help the gluten issue). Come to find out, she was still being glutened form Rice Dream and Quaker Rice Cakes, which will give her terrible reactions now, but I'm thinking the papaya may have helped neutralize it back then because we were seeing improvements in spite of the gluten.

Tumeric doesn't contain gluten. It just makes the thing look read the same way that gluten does. That way you cannot tell with that test whether or not it contains gluten. Is that more clear?

Wow, what a life.

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

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

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.