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

Glutened Again By So Called "gluten Free"


GFreeMO

Recommended Posts

GFreeMO Proficient

A few hours ago for lunch, I made myself a plain burger. I ate that with Heinz ketchup. I know this is safe as I have eaten it a million times. I usually eat Lays plain Stax but since reading Frito Lays gluten free list, I decided to try Lays Classic plain chips. With in an hour of eating the chips, I got my normal reaction, short of breath, flushed face, extreme bloating and D.

I suspect that Frito Lays has a huge CC issue going on. It just makes me furious that some companies claim products to be gluten free and then we get really sick.

Makes me want to eat nothing processed. I could have cut up potato and fried them in some oil and made my own chips and I wouldnt be feeling so badly right now.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

A few hours ago for lunch, I made myself a plain burger. I ate that with Heinz ketchup. I know this is safe as I have eaten it a million times. I usually eat Lays plain Stax but since reading Frito Lays gluten free list, I decided to try Lays Classic plain chips. With in an hour of eating the chips, I got my normal reaction, short of breath, flushed face, extreme bloating and D.

I suspect that Frito Lays has a huge CC issue going on. It just makes me furious that some companies claim products to be gluten free and then we get really sick.

Makes me want to eat nothing processed. I could have cut up potato and fried them in some oil and made my own chips and I wouldnt be feeling so badly right now.

You know, I have been wondering about Lay's chips. They are the one thing I "sneak" from time to time. I eat NO OTHER PACKAGED FOODS!! and I,too get flushed face, scratchy throat and short of breath!! OMG!! I have wondered what was messing with me!! Maybe that's it for me, too ...WOW.... Thanks for posting this!! It's been a mystery....I feel like an idiot.

I am so Sorry you feel so bad :(

Monklady123 Collaborator

You know, I have been wondering about Lay's chips. They are the one thing I "sneak" from time to time. I eat NO OTHER PACKAGED FOODS!! and I,too get flushed face, throat scratchy and short of breath!! OMG!! I have wondered what was messing with me!! Maybe that's it for me, too ...WOW.... Thanks for posting this!! It's been a mystery....I feel like an idiot.

I am so Sorry you feel so bad :(

Yeah, I don't trust Lays. Next time you want a chip try Utz brand. It says right under the ingredients list "this is a gluten free food." :)

Hope you feel better soon.

IrishHeart Veteran

Yeah, I don't trust Lays. Next time you want a chip try Utz brand. It says right under the ingredients list "this is a gluten free food." :)

Hope you feel better soon.

BUT the Lay's bag says "Gluten Free" too!! so much for that!! I'll try the Utz..Hubby says we should eat Cape Cod brand as we KNOW that's all they make at their factory ...thanks!

IrishHeart Veteran

Yeah, I don't trust Lays. Next time you want a chip try Utz brand. It says right under the ingredients list "this is a gluten free food." :)

Hope you feel better soon.

Since we are on the topic of gluten-free foods "are they/aren't they?"....I WAS eating Oscar Meyer cold cuts. Supposedly gluten-free/CF/SF, so THEY say...but felt "spacey" --one of my "tells" -- after eating it so I stopped.

Are Oscar Meyer deli cuts in the package "safe"..??would you happen to know??

Lisa Mentor

The term "gluten free" is not yet a legal standard in the US. All labeling gluten free labeling is voluntary. Most companies do not test, to claim a "gluten free" status, or at least under the 20ppm suggested as a standard.

What I have seen and most likely will see more of in the future is companies claiming "no gluten ingredients". That will relieve them of any cross contamination claims, nor the obligation to test.

It's not perfect, BUT...WE'VE COME A LOOONG WAY BABY! B)

IrishHeart Veteran

The term "gluten free" is not yet a legal standard in the US. All labeling gluten free labeling is voluntary. Most companies do not test, to claim a "gluten free" status, or at least under the 20ppm suggested as a standard.

What I have seen and most likely will see more of in the future is companies claiming "no gluten ingredients". That will relieve them of any cross contamination claims, nor the obligation to test.

It's not perfect, BUT...WE'VE COME A LOOONG WAY BABY! B)

Hi Lisa,

No gluten ingredients would be a lot clearer!! I am aware of this <20 ppm thing (and I agree with you that this country is waaaay behind other countries in this regulation) but I was HOPING...foolishly...that a company's word was good. It's not. I have been burned many times. Oh well.

I think a product made in a "dedicated" gluten-free factory is about as good as it gets.

I am lucky! We have a totally gluten-free bakery/restaurant near us. Only place I feel safe to eat!! :)


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I just want to add that many of us have a wide spectrum of sensitivity. Some people can be ill from a product that contains no gluten ingredients (due to cross contact), whereas some have eaten the same product for years without issues.

Many times its trial and error and individualized. It doesn't necessarily mean that a particular product is not safe for others :)

GFreeMO Proficient

Ive never heard of Utz chips. I don't think they have them in my part of the country. (Missouri) Anyone know where I can find them?

Lisa Mentor

Ive never heard of Utz chips. I don't think they have them in my part of the country. (Missouri) Anyone know where I can find them?

Open Original Shared Link

Open Original Shared Link

GFreeMO Proficient

The Utz chips look great and what an allergy friendly company! It looks like they are mostly on the east coast. Too bad they are no where to be found in my area.

I have been eating the plain Lays Stax for 2 years before I tried these Lays Classic chips today and never had a problem with them. They are made on dedicated equipment in a whole other country. Mexico

Back to Stax for me. Live and learn I guess. Celiac makes you want to stick with tried and true brands and never veer from them.

Lisa Mentor

The Utz chips look great and what an allergy friendly company! It looks like they are mostly on the east coast. Too bad they are no where to be found in my area.

I have been eating the plain Lays Stax for 2 years before I tried these Lays Classic chips today and never had a problem with them. They are made on dedicated equipment in a whole other country. Mexico

Back to Stax for me. Live and learn I guess. Celiac makes you want to stick with tried and true brands and never veer from them.

Well then, live a little....ALL flavored STAX are gluten free. Branch out for the BBQ! :P

IrishHeart Veteran

Well then, live a little....ALL flavored STAX are gluten free. Branch out for the BBQ! :P

I think I am just "super-sensitive" right now :P I seem to do all right with Cape Cod chips...but, that's ALL they make in their factory...anyway, thanks for your thoughts! Appreciate it!

Robert16 Newbie

I give CAPE COD CHIP a-plus also they are great only snack i get to.

sa1937 Community Regular

The Utz chips look great and what an allergy friendly company! It looks like they are mostly on the east coast. Too bad they are no where to be found in my area.

Utz chips are made in Hanover, PA, which probably explains why that brand is so readily available in grocery stores around here (south central PA).

GlutenFreeManna Rising Star

I am super sensitive to cc and I eat Wavy Lays all the time without problems, BUT I don't consider them a "gluten free product" I consider them to be something with no gluten ingredients added. Because of that difference in my mind, I wouldn't be too surprised if someday I had a reaction to eating them. When I think of "gluten free products" I think of products that are actively marketed as gluten free, meaning it's printed in BIG letters on the front (not the tiny note under the ingredients) and they advertise as gluten free, are made in a dedicated gluten-free facility or have an endorsement from a gluten-free organization. I know it sucks that a main stream product with no gluten ingredients added cannot be trusted, but I'm much more dissappointed when a company makes bold gluten-free claims and then fails to make a 100% safe product.

I hope you recover quickly from your glutening.

lovegrov Collaborator

Since we are on the topic of gluten-free foods "are they/aren't they?"....I WAS eating Oscar Meyer cold cuts. Supposedly gluten-free/CF/SF, so THEY say...but felt "spacey" --one of my "tells" -- after eating it so I stopped.

Are Oscar Meyer deli cuts in the package "safe"..??would you happen to know??

They are. Kraft will clearly list any gluten so just rad the ingredients, and I don't think any of their cold cuts have gluten.

richard

T.H. Community Regular

Kraft will clearly list any gluten so just rad the ingredients, and I don't think any of their cold cuts have gluten.

But they still fall into that category of 'no gluten ingredients' rather than 'gluten free and actually testing our products to prove it,' unfortunately.

tea-and-crumpets Explorer

I was actually looking at the Lays list today, since I wanted to try the Tostios scoops chips. They say specifically that Lays Classic are gluten free AND that they have tested to less than 20 ppm.

Open Original Shared Link

Is this new? I don't remember anything beyond Stax being tested before. If it is new, maybe you got a batch from before?

Actually, looking at it again it says the list was updated on February 21, 2011.

GFreeMO Proficient

I was actually looking at the Lays list today, since I wanted to try the Tostios scoops chips. They say specifically that Lays Classic are gluten free AND that they have tested to less than 20 ppm.

Open Original Shared Link

Is this new? I don't remember anything beyond Stax being tested before. If it is new, maybe you got a batch from before?

Actually, looking at it again it says the list was updated on February 21, 2011.

I may have had the older non tested ones b/c the date on my bag was March 8th. I think that they have a shelf life of several months. at any rate, I wont be eating them again. I emailed Frito Lay and they told me that the Stax were still the only chips produced on dedicated equipment.

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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.