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 Celiac.com!
    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!

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

 

Link to comment
Share on other sites
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? 

 

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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,  

 

Link to comment
Share on other sites

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!!!!

Link to comment
Share on other sites
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....   

Link to comment
Share on other sites
  • 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!

Link to comment
Share on other sites
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)

Link to comment
Share on other sites
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

 

 

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,073
    • Most Online (within 30 mins)
      7,748

    rusky
    Newest Member
    rusky
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Nacina
      Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  
    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
×
×
  • Create New...