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, but is it Really?!?!


RaRaLorna

Recommended Posts

RaRaLorna Rookie

I just bought a big old box of trail mix packages from Sam's Club (first time shopping in there with the kids since diagnosis) it had GLUTEN FREE written all over the box, and it's all over each individual package, but when I got home and looked closer at the box it says manufactured on shared equipment with wheat!!!! How can they have the GLUTEN FREE labeling all over it when it's been on shared equipment? So is it safe to use? Or is it not? Should I donate it to church? Of course I gave a package to each of them in the car to eat on the way home :( So Frustrating! 

Also, what's everyone's opinions on Gluten Free Cheerios? I've read so much that says don't do it, but of course my husband told my daughter she could have some. 

Thanks!


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

The cheerios are STILL making many celiacs sick. They separate the oats from the wheat contamination mechanically. This does not really work and has been causing hot spots where your playing Russian roulette on if you get a good box or a bad box......as to the same club, I would not trust them.     Here is a list of some safe foods, BTW if you want a cheerios like food go with Vans's Gluten free ones they have some strawberry and other flavored ones. I keep them on hand for a friend who sometimes stays over.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

  Everything from entree, staples, breakfast, ramen, soups, condiments, chips, burritos, hot pocket knock offs, etc. I have complied a list of trusted companies, places to get goods, and ways to order them from stores.

RaRaLorna Rookie

Thanks! I've been trying to find recent advice on the Cheerios, seems like everything I see is from 2015, not more recent. :( That's a huge bummer! 

Thanks for the suggestion on Van's I'll have to search for them.

 

Jmg Mentor

Hi :)

Just to add whenever I see this: 

9 hours ago, RaRaLorna said:

manufactured on shared equipment with wheat!

I (albeit sometimes reluctantly) pass on the product. They could just be covering their ass, but any warning that would impact on sales is only on that package for a reason. There's nearly always a safe acceptable alternative so why take the risk? 

 

StephanieL Enthusiast

Just an FYI- Unless it says "Dedicated gluten-free facility" or you call on everything, the "made on/in/shred equipment" is all voluntary labeling.  So just because it doesn't say "made on" doesn't mean it isn't.  They will most likely say "we use industry standards for cleaning equipment between batches" in many cases. 

CeliacMommaX2 Enthusiast

Someone correct me if I'm wrong, but I believe companies can label foods "gluten free" as long as they have no gluten containing products in the ingredients.  "Gluten free" labeled foods can still be highly cross contaminated and even test above the 20 ppm standard.  I've started only purchasing foods labeled with the "certified gluten free" label as I believe they are tested as less than 10 ppm (once again, correct me if I'm wrong!) 

We think our daughter cannot tolerate oats even if gluten free, so Cheerios are definitely out for us.  We really did love the Van's products (crackers, bars, cereal), but most are made with oats.

kareng Grand Master

 T

12 minutes ago, CeliacMommaX2 said:

Someone correct me if I'm wrong, but I believe companies can label foods "gluten free" as long as they have no gluten containing products in the ingredients.  "Gluten free" labeled foods can still be highly cross contaminated and even test above the 20 ppm standard.  I've started only purchasing foods labeled with the "certified gluten free" label as I believe they are tested as less than 10 ppm (once again, correct me if I'm wrong!) 

We think our daughter cannot tolerate oats even if gluten free, so Cheerios are definitely out for us.  We really did love the Van's products (crackers, bars, cereal), but most are made with oats.

Ok....you said correct you....lol

i am assuming US.  It can be a bit different in different countries.

The US law does not require actual testing....but, your food must be <20 ppm.  So, most big companies that say " gluten-free" on the package are very sure of that fact.  It is  a legal nightmare for them if the food is tested and not <20 ppm.  What I mean is, if they are asked to prove it, they better be able to prove <20 ppm.

Various " certifying" agencies have different requirements for gluten-free.  What you should understand, is that they train a company ( could be anything from providing basic instructions to a short training course) and that isnit.  They do not come around and do random checks or require the company to send them samples.

Most of this " certified gluten-free" pertains to baked goods & noodles.  There are major companies that make entirely gluten-free products -Schar, Glutino, Udis, etc.  that does not mean that a can of tomato sauce or a block of cheddar, not labelled gluten-free are not safe,  

 


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



Celiac.com Sponsor (A8-M):



CeliacMommaX2 Enthusiast
5 minutes ago, kareng said:

 T

Ok....you said correct you....lol

i am assuming US.  It can be a bit different in different countries.

The US law does not require actual testing....but, your food must be <20 ppm.  So, most big companies that say " gluten-free" on the package are very sure of that fact.  It is  a legal nightmare for them if the food is tested and not <20 ppm.  What I mean is, if they are asked to prove it, they better be able to prove <20 ppm.

Various " certifying" agencies have different requirements for gluten-free.  What you should understand, is that they train a company ( could be anything from providing basic instructions to a short training course) and that isnit.  They do not come around and do random checks or require the company to send them samples.

Most of this " certified gluten-free" pertains to baked goods & noodles.  There are major companies that make entirely gluten-free products -Schar, Glutino, Udis, etc.  that does not mean that a can of tomato sauce or a block of cheddar, not labelled gluten-free are not safe,  

 

Thank you for the corrections!  I hope I didn't lead anyone wrong!  Sad, that after 2 years, I'm still not sure about all of the labeling!!!!

BergieF Explorer
On ‎4‎/‎17‎/‎2017 at 10:01 PM, CeliacMommaX2 said:

Thank you for the corrections!  I hope I didn't lead anyone wrong!  Sad, that after 2 years, I'm still not sure about all of the labeling!!!!

Companies get so sneaky with labeling.  I stick with the companies that are dedicated gluten free if I am buying processed foods.  Most will have a website with a section under Frequent Q&A's.  If they don't, email or call to get clarification as to how the item is processed.  I know that my family can't eat anything that has been made on a shared line and then cleaned.  Good Luck....   

  • 3 months later...
celiacmom774 Apprentice

I am from Canada and we were told at our Children's Hospital NOT to eat Cheerios. We were so excited that we had one box of cereal in our cupboard that has been a staple in my house for over 20 years that we were going to be able to keep. Then we were told that while they are considered gluten free and have it on the box, they are not safe for people with Celiac.  Such a disappointment!  Glad Chex and Brown Rice Krisipies are okay, learning to like both!

Ennis-TX Grand Master
4 minutes ago, celiacmom774 said:

I am from Canada and we were told at our Children's Hospital NOT to eat Cheerios. We were so excited that we had one box of cereal in our cupboard that has been a staple in my house for over 20 years that we were going to be able to keep. Then we were told that while they are considered gluten free and have it on the box, they are not safe for people with Celiac.  Such a disappointment!  Glad Chex and Brown Rice Krisipies are okay, learning to like both!

Cheerios have been hit and miss for years, it has to do with how they get and sort the oats, the processing etc. Even the testing they do is iffy, there are reports STILL coming in about them making celiacs sick. We normally suggest avoiding oats for the first few months then if you want try reintroducing gluten-free certified ones (I suggest gluten-free Harvest if any) If you still crave O type cereal Vans makes some along with a few other brands.  I personally stick to nut meal based porridge and a few expensive nut based versions of stuff ( I can not tolerate grains or carbs well)

BergieF Explorer
1 hour ago, celiacmom774 said:

I am from Canada and we were told at our Children's Hospital NOT to eat Cheerios. We were so excited that we had one box of cereal in our cupboard that has been a staple in my house for over 20 years that we were going to be able to keep. Then we were told that while they are considered gluten free and have it on the box, they are not safe for people with Celiac.  Such a disappointment!  Glad Chex and Brown Rice Krisipies are okay, learning to like both!

Regular Rice Krispies in the US and Canada are not gluten free.  They contain Barley Malt.  See the below ingredients of the Rice Krispies in Canada...

Ingredients:

Rice, sugar, salt, corn and barley malt extract, Vitamins and minerals: iron, niacinamide, thiamine hydrochloride, cholecalciferol (vitamin d3), pyridoxine hydrochloride, d-calcium pantothenate, folic acid.

Open Original Shared Link

 

 

Victoria1234 Experienced
1 hour ago, BergieF said:

Regular Rice Krispies in the US and Canada are not gluten free.  They contain Barley Malt.  See the below ingredients of the Rice Krispies in Canada...

Ingredients:

Rice, sugar, salt, corn and barley malt extract, Vitamins and minerals: iron, niacinamide, thiamine hydrochloride, cholecalciferol (vitamin d3), pyridoxine hydrochloride, d-calcium pantothenate, folic acid.

Open Original Shared Link

 

 

They said brown rice  crispies :) 

Whole grain brown rice, sugar, salt, bht Vitamins and minerals: iron, thiamine hydrochloride, cholecalciferol (vitamin d3), niacinamide, pyridoxine hydrochloride, folic acid, d-calcium pantothenate.

Open Original Shared Link

BergieF Explorer
57 minutes ago, Victoria1234 said:

They said brown rice  crispies :) 

Whole grain brown rice, sugar, salt, bht Vitamins and minerals: iron, thiamine hydrochloride, cholecalciferol (vitamin d3), niacinamide, pyridoxine hydrochloride, folic acid, d-calcium pantothenate.

Open Original Shared Link

I had edited my comment earlier to show that I was talking about regular Rice Krispies.  My eyes skipped over the "BROWN" in the post. 

celiacmom774 Apprentice

Yes, the ones I have are the brown rice krispies.  My 13 year old daughter was just diagnosed with Celiac. Two of my other children have allergies to peanuts and nuts. Has anyone come across any other good cereals available in Canada that are both gluten and nut free?  Many of the gluten-free products I find either contain nuts or have a peanut/nut warning on the label.  I have lived with have peanut/nut allergies in the house for 19 years, but only on the first month of eating gluten free. Any suggestions of gluten free /nut free products available in Canada would be greatly appreciated.

Ennis-TX Grand Master
10 minutes ago, celiacmom774 said:

Yes, the ones I have are the brown rice krispies.  My 13 year old daughter was just diagnosed with Celiac. Two of my other children have allergies to peanuts and nuts. Has anyone come across any other good cereals available in Canada that are both gluten and nut free?  Many of the gluten-free products I find either contain nuts or have a peanut/nut warning on the label.  I have lived with have peanut/nut allergies in the house for 19 years, but only on the first month of eating gluten free. Any suggestions of gluten free /nut free products available in Canada would be greatly appreciated.

Open Original Shared Link

They have seeds, fruit, etc all Nut, Peanut, and Gluten free. Look up Enjoy Life products also as they are free of all major allergens. >.< I have issues with peanuts myself but carbs/grains/sugars/corn are my other issues and I live on almonds and coconut. Unsure which of us have it worse lol.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,499
    • Most Online (within 30 mins)
      7,748

    Kabotabob
    Newest Member
    Kabotabob
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      @Scott Adams Recently got blood work back and TTG antibodies went from 168.8 to 16.7 and deaminated gliadin was 22 (was not measured the first time). Is this a good start for an 11 month time frame? Just having a hard time with why my symptoms seemed to be flaring up again when my blood work has improved. 
    • dublin555
      I’ve been through something similar recently, and I know how frustrating it can be when nothing seems to work. Based on what you’ve described, it might be worth considering dermatitis herpetiformis, especially with the family history of celiac disease. Testing could give you some answers, and while online kits aren’t as reliable as a GP, they’re a good start if appointments are hard to get. I also found relief through medical cannabis for my eczema, at Releaf, a clinic in the UK that offers eczema medical cannabis treatment. They start with a low dose, adjust weekly, and track progress through online consultations.
    • trents
      Welcome to the forum, @Jaylan! Almost all of the symptoms and medical conditions you describe have been found to be associated with celiac disease. But they can also be caused by other things as well. There certainly is enough circumstantial evidence in your list of medical problems to warrant being tested for celiac disease. Ask your physician to order a celiac panel consisting of, at the very minimum, these two blood antibody tests: total IGA and tTG-IGA. Please do not attempt to limit your gluten intake before the blood draw is taken or you will invalidate the testing. Incidentally, celiac disease is often misdiagnosed as IBS.
    • Jaylan
      Hi there!  I’ve recently been tested for celiac disease, along with other autoimmune diseases. My symptoms started back in 2018 with joint pain in my knees. Since then, it has progressively worsened. I now have joint pain in both knees, elbows, and sometimes my shoulders. The pain is almost unbearable. I feel so stiff in the mornings, and this stiffness can last the whole day. I also experience swelling and warmth around those areas.   Other symptoms include IBS (diagnosed at age 16), restless legs, chest pain, tiredness, miscarriages, bloating, and sharp pain on the right side of my stomach. In the past, I’ve also had problems with a vitamin D deficiency, and my serum folate levels recently came back very low.   My question is: How likely is it that I have celiac disease?    
    • Rebeccaj
×
×
  • Create New...