So Difficult (And Frustrated) With Companies Not Labelling Properly

[glut'nfree]

My husband has been feeling off for the past week. I've been trying hard to find the cause. Then I realize (after calling) that their lines have gluten on it.

I'm so frustrated. I'm sure most of you have been down this path and that I'm lucky, compared to years ago. I suppose I literally have to not buy ANYTHING unless it SAYS gluten free right on the package. Even single spices (which I thought were okay) I STILL have to call and ask if I want to use it. GRRRRR... So frustrated right now.

Dawna

[adab8ca]

My husband has been feeling off for the past week. I've been trying hard to find the cause. Then I realize (after calling) that their lines have gluten on it.

I'm so frustrated. I'm sure most of you have been down this path and that I'm lucky, compared to years ago. I suppose I literally have to not buy ANYTHING unless it SAYS gluten free right on the package. Even single spices (which I thought were okay) I STILL have to call and ask if I want to use it. GRRRRR... So frustrated right now.

Dawna

oh that is too bad! I really don't expect the world to stop revolving because I have celiac but this labeling is SUCH a problem. For some people, the shared equipment info would certainly be helpful.Hope he feels better soon!

[T.H.]

I know what you mean. I was getting sick over and over again and finally figured out it was a contaminated bottle of oil from Spectrum. They process wheat germ oil on the same line as all the rest of their oils. Argh.

[glut'nfree]

I know what you mean. I was getting sick over and over again and finally figured out it was a contaminated bottle of oil from Spectrum. They process wheat germ oil on the same line as all the rest of their oils. Argh.

WHAT!?!?! Spectrum oils too!!! BAH!! I GIVE UP!!! My poor husband. I may never know what made him sick this week.

Yesterday and today I've been on the phone CONSTANTLY!! Even cornmeal and RICE flour I just bought may have been cross contaminated (they're getting back to me). I mean COME ON!!! Do you think I would WANT to buy rice flour if I didn't HAVE to!?!?! Ha... sorry, that's probably a bit mean. But FRIG!!! LABELS PEOPLE!!!!!!!!!!!!!

[ElseB]

Apparently the American Dietetic Association did a pilot study on 22 samples of naturally gluten-free grains (i.e. rice, corn, etc) and found that 7 of the samples contained gluten levels above the safe threshold for celiacs (20ppm). These grains were not labelled as gluten free, but since they were naturally gluten free, most celiacs would assume they were safe. The advice from the Canadian Celiac Association has been that we should be grain products only from manufacturers and vendors who test and label their products gluten-free.

For the most part, I buy only grains that are labelled gluten free. But....I"m not sure they've all been tested....

[potatopeelingmom]

That's disappointing. I use Spectrum olive oil exclusively. Everytime we fry foods we feel all bloated. That must be it.

Have you figured out an olive oil that is gluten-free yet?

Monica

I know what you mean. I was getting sick over and over again and finally figured out it was a contaminated bottle of oil from Spectrum. They process wheat germ oil on the same line as all the rest of their oils. Argh.

[eatmeat4good]

Oh my God you guys!

I really thought single spices would be ok. Do they not have to disclose the also processed on shared equipment with wheat? Really?

And Spectrum oils are the ones I use too! Because they use glass bottles and not plastic for one thing, but if all the oil is on shared lines...that might be our problem too.

Definitely we are getting better, but my son and I both feel sick after a "treat" like fried chicken tenders. I thought we couldn't handle oil.

So is there such a thing as certified gluten free oil?

We gave up all grains, including rice. Even the lentils I bought were on shared lines. I want safe food. I don't think we are super sensitive, I think we need completely safe options that aren't "possibly" contaminated.

I used to ignore that and use the shared lines products, but I can definitely tell when we don't.

So please if anyone knows about safe oils....couple of us need to know. Wow...thanks TH!

[GlutenFreeManna]

I am leary of organic anything that is not fresh meat, whole fruit or whole vegetables. Most organic prepackaged food companies process organic whole wheat products too because people who eat organic are concerned about their health and the "healthy" guidelines for non-celaics involves eating lots of wheat.

As far as the spices--all single ingredient McCormick spices are gluten free. I use them and have not had any problems and I am very sensitive to cc.

As far as the olive oil I use Bertolli pure light olive oil processed in Italy (I buy the large jugs at BJ's warehouse for $16). They do not make any other types of oil in their factory so there is not a shared lines risk.

[GlutenFreeManna]

Oh my God you guys!

I really thought single spices would be ok. Do they not have to disclose the also processed on shared equipment with wheat? Really?

And Spectrum oils are the ones I use too! Because they use glass bottles and not plastic for one thing, but if all the oil is on shared lines...that might be our problem too.

Definitely we are getting better, but my son and I both feel sick after a "treat" like fried chicken tenders. I thought we couldn't handle oil.

So is there such a thing as certified gluten free oil?

We gave up all grains, including rice. Even the lentils I bought were on shared lines. I want safe food. I don't think we are super sensitive, I think we need completely safe options that aren't "possibly" contaminated.

I used to ignore that and use the shared lines products, but I can definitely tell when we don't.

So please if anyone knows about safe oils....couple of us need to know. Wow...thanks TH!

There are no laws requiring companies to disclose shared lines (at least in the US). When they do so it is done voluntarily. Even if they had certified gluten free oil it could still contain enough cc to make some celiacs sick. Most certified products are tested to have 20 ppm or less in them. The most sensitive test available is 5 ppm. So a product could have 1-20 ppm and still be labeled gluten free. McDonald's fries are one of these items (not to bring up a heated debate). They are made using wheat but they test to under 20 ppm and therefore McDonalds can claim they are gluten free. Well they make me sick even if made in a non-shared fryer. IMO they are not REALLY gluten-free, but they may be okay for some people that are only gluten sensitive and not very sensitive to cc.

[eatmeat4good]

Oh my! Thank you for all of that information.

Oh what tangled webs we weave when first we practice to perceive "gluten free".

[psawyer]

As said, there is no requirement to disclose shared equipment or facilities. Those companies that do so are doing it voluntarily. So, if you see such a notice, give it consideration, but if you don't see one, don't assume anything.

In the United States, the law (FALCPA) contains an explicit exemption for "highly refined oils" without actually defining what "highly refined" means. As a result, in the US, soybean oil can legally be listed as "vegetable oil" in the ingredients without listing soy anywhere on the label. Most companies, including Kraft, General Mills and Unilever, will always list the ingredient as soybean oil or soy oil, but will not include it in the "contains" statement because to do so would be "misleading" per the FDA interpretation.

The same applies to refined oils derived from wheat or other potential allergens, but again, Kraft and many other companies will clearly disclose it in the ingredients.

You must always read BOTH the ingredients and the "contains" list (if there is one), if you are in the US.

In Canada, the ten "priority allergens" include wheat and soy, and there is no exemption for refined oils.

[psawyer]

With regard to the 20 ppm rule for "gluten-free" -- in the US it does not yet exist.

Despite the requirement in FALCPA for FDA to develop and implement a defintion for "gluten-free" it has not yet happened. So, gluten-free means whatever the company wants it to mean. Worse, it means whatever the plaintiff's lawyer can convice a jury it should mean.

This has led to many companies replying "X is not gluten-free" when asked, even though the product is gluten-free. Their lawyers won't let them say that it is, for fear of a lawsuit.

[eatmeat4good]

So products labeled gluten free can have MORE than 20 ppm and still legally label themselves gluten free.

If I understand this correctly...gluten free does not mean gluten free.

And who decided it was safe for Celiacs to have 20 ppm? I'm not trying to be difficult, just safe. hmm

[GlutenFreeManna]

So products labeled gluten free can have MORE than 20 ppm and still legally label themselves gluten free.

If I understand this correctly...gluten free does not mean gluten free.

And who decided it was safe for Celiacs to have 20 ppm? I'm not trying to be difficult, just safe. hmm

In the US, yes it's "possible" but not likely to be happening frequently. Plus even if there were regulations for the use of the words "gluten free" on food that would not cover vitamins and non-food items (mouthwash for example). We see posts on here all the time from people that got sick from vitamins that said they were "gluten free" but contained wheat grass or barley grass. Those ingredients may techinaclly not contian large amounts of the protein part of the grain but they are likely to contian enough that thtey would not be gluten free and not safe IMO for celiacs to risk taking.

Of course, althoguh it's possble for companies to label things gltuen free falsely they are getting less and less likely to do so. They open themselve up to lawsuits by making these claims falsely. That's why many comapnies are hesitant to use teh words gluten free or to even verify over the phone whether or not their product has gluten in it. They make "CYA" statements instead like "while this product does not have gluten added we cannot verify whether all our suppliers are gluten free". Which is really a ridiculous statement. If we were to call and ask if their products contained any traces of arsnic they would not say they cannot control outside suppliers practices or that their products could have been shipped or processed on the same equipment with arsnic. Yes it does not have any poison added on purpose, but no we will not verify that. In essensence they are saying "eat at your own risk, we really know nothing about this thing called gluten". Don't get me wrong, I do appreciate the companies that at least take the time to say there are no gluten ingredients used. If they describe the product as not being processed on shared equipment thats all the better. At least I can make an educated decision whether to risk eating or not, but clearly we have a LONG way to go in educating companies. As long as we don't have laws to protect us we need to police the companies as a community. If a company claims somethign is "gluten free" when clearly it has a gltuen ingredient listed or they admit that they use Barley water in the process but it tests gluten free, we CAN change their practices by our wallets and our words. Spread the word when you come across these products, write the company to complaina nd question WHY they claim their product is gluten free when it has a gluten containing ingredient and then REFUSE TO BUY from that company until they change their faulty labeling.

Sorry I got a little carried away there. Rant over/

[GlutenFreeManna]

So products labeled gluten free can have MORE than 20 ppm and still legally label themselves gluten free.

If I understand this correctly...gluten free does not mean gluten free.

And who decided it was safe for Celiacs to have 20 ppm? I'm not trying to be difficult, just safe. hmm

Also meant to answer your second question. As far as I know there is not enough research showing that 20 ppm is safe in the long term diet. The reason for 20 ppm standard in other countries is that it was the most sensitve test they had at the time. The testing is very expensive for companies to do from what I hear. Something tested at 20 ppm could have zero gltuen in it, but there is no test sensitive enough (yet) to test for zero gluten. I go for companies that have dedicated gluten-free processing equipment AND test to be safest. But there are also many mainstream products that I trust that are processed on dedicated equipment. Misison corn tortillas for example are processed on equipment that only processes corn so the chance of cc from their wheat tortillas is almost nil. I have been eating them regularly and never had a problem.

[potatopeelingmom]

Also meant to answer your second question. As far as I know there is not enough research showing that 20 ppm is safe in the long term diet. The reason for 20 ppm standard in other countries is that it was the most sensitve test they had at the time. The testing is very expensive for companies to do from what I hear. Something tested at 20 ppm could have zero gltuen in it, but there is no test sensitive enough (yet) to test for zero gluten. I go for companies that have dedicated gluten-free processing equipment AND test to be safest. But there are also many mainstream products that I trust that are processed on dedicated equipment. Misison corn tortillas for example are processed on equipment that only processes corn so the chance of cc from their wheat tortillas is almost nil. I have been eating them regularly and never had a problem.

A product tested at 20 ppm does have traces of gluten. The Elisa testing can determine 10 ppm or less and 5 ppm or less. 5 ppm is the highest (lowest) rating at present, so these products can actually be zero to 5 ppm.

[tarnalberry]

Something tested at 20 ppm could have zero gltuen in it, but there is no test sensitive enough (yet) to test for zero gluten.

There will NEVER be a test that can test for zero gluten. It is not scientifically possible to test for zero gluten in any sort of representative way.

[T.H.]

Oh man, there is so much on this thread to talk about!

Oil first: I use Bariani olive oil. They are another company that only makes olive oil on their lines, and I have to order them on-line, although some Whole foods and other health food stores in California carry them, I believe.

Mcdonald's information: here's something I heard on a Celiac list and called around my own town to verify. Really, it's gonna make you just grit your teeth. So, you know those lovely dedicated friers Mcdonald's has? Well, like a number of fast food places, they usually filter and reuse the oil for a few days before getting new oil. But some Mcdonald's take the oil from their dedicated frier and store it at night in one big container with all the other gluten-contaminated oil! And then they just get some oil from that collective bin for their 'dedicated' frier over the next few days until it's time for new oil.

I couldn't believe it when I heard, but at least in my town, this is absolutely true, and it seems to vary by Mcdonald's. You have to ask at each one to see what their policy is. I've found ones in my town that have dedicated storage and friers, and some that store the oil all in one big bin. So, something to look out for even for those who ARE safe with Mcdonald's fries, yeah?

And who decided it was safe for Celiacs to have 20 ppm?

Like GlutenFreeManna said, it was mostly based on the testing abilities at the time, but right now, it's being reinforced through biased studies where the researchers don't even seem to understand the bias they are reinforcing.

There are a few studies right now that have tested Celiacs for their gluten tolerance. They always seem to conclude that a certain level - that would be 20ppm daily or even above for most people - is safe.

However, here's the problem.

- To be included in these studies, a celiac has to be healed and healthy. In other words, one has to be strictly adhering to their gluten-free diet.

- The proposed or in effect laws in Europe, the USA, and the world health organization define gluten free as 20ppm of gluten or less.

So no matter where the studies are, what the researchers end up with are participants for studies who are all people who can tolerate 20ppm of gluten daily. All the people who can't tolerate that amount are having trouble in today's gluten free processed world, and don't heal, so we don't get included in studies like this.

Huh...all people who healed on a gluten-free diet of 20ppm or less can tolerate 20ppm of gluten or less and heal. Wow. What a shock.

I don't think I'd care except for the fact that I've had more than one doctor quoting to me what amounts are 'safe' for celiacs, and it disturbs me a lot that the population of celiacs who might have problems with this amount of gluten are effectively being eliminated from the research.

Although we're getting the word out, I think. I had a lovely moment the other day, with my Dietician. She was telling me that I'm the most gluten sensitive person that she or my GI doc have as a patient.

Okay, no, that wasn't all that exciting to hear. But then, she said that this has been helping them out. If I can eat a food safely, they know that their other patients aren't going to have a gluten reaction to it, so they've been making a list, LOL. And she has been passing on all the information I find out about where contamination has occurred in some foods that she and the GI thought were safe, but I reacted to. The GI doc is looking into using this information to see if it might help some of his refractory celiac patients, in case they might simply react to extremely low levels of gluten.

So something like that - that's great to hear. Renews my faith in medicine, really, when a doctor is paying attention, and noticing the research bias, and is willing to help his patients with solutions that would cause no harm, involve no drugs, but maybe no accepted practice.

[mushroom]

Well,l here I go with a personal anecdote for what it's worth. I do not consider myself to be particularly sensitive to gluten. That's why I was able to continue eating it until over 60 without having severe consequences (unless you consider psoriatic arthritis severe, which come to think of it, I do, but it was that late in life before it happened.

So last summer I consulted a very respected nutritionist and we decided together that even though I had been gluten free for 2-1/2 years I still had leaky gut. She prescribed a probiotic for me which is very expensive, hard to get where I live, but easy to take. I took it religiously for months, and found myself with more bloating, looser stool, and generally feeling worse rather than better. I checked it out on line and find that they claim a gluten content of 20 ppm. I was not aware it contained any gluten at all. Since stopping it, I have had much less bloating and better stool, so I think that level of gluten was bothering me. However, I do think my gut overall is a lot better. I have to decide how much, as to whether I should continue taking it or not. I am due for an online consultation Meanwhile, I have some very expensive product sitting in my refrigerator taking up space, which I had to import from Australia with customs duty and GST and what not. So don't feel bad as a newbie that you don't have it figured out yet

[eatmeat4good]

I was just thinking the other day, I wonder if Shauna would just make me a list of what SHE uses in HER kitchen and bathroom and then I won't have to figure out how sensitive I am, I will just assume I am super sensitive like she is so my DH can finally frigging heal!!!

So your Dr. and nutritionist are not alone in wanting that list from you.

Well, hey! You've already done the work! And you like to write and help people right? .....is this working?

[eatmeat4good]

Well,l here I go with a personal anecdote for what it's worth. I do not consider myself to be particularly sensitive to gluten. That's why I was able to continue eating it until over 60 without having severe consequences (unless you consider psoriatic arthritis severe, which come to think of it, I do, but it was that late in life before it happened.

So last summer I consulted a very respected nutritionist and we decided together that even though I had been gluten free for 2-1/2 years I still had leaky gut. She prescribed a probiotic for me which is very expensive, hard to get where I live, but easy to take. I took it religiously for months, and found myself with more bloating, looser stool, and generally feeling worse rather than better. I checked it out on line and find that they claim a gluten content of 20 ppm. I was not aware it contained any gluten at all. Since stopping it, I have had much less bloating and better stool, so I think that level of gluten was bothering me. However, I do think my gut overall is a lot better. I have to decide how much, as to whether I should continue taking it or not. I am due for an online consultation Meanwhile, I have some very expensive product sitting in my refrigerator taking up space, which I had to import from Australia with customs duty and GST and what not. So don't feel bad as a newbie that you don't have it figured out yet

That is an amazing story Mushroom. I keep hoping I will get this all down and can dance on with my life. But it ain't gonna be that easy is it? So glad you guys share these stories.

[eatmeat4good]

And the french fry story...scary. I let my son eat those.

[Takala]

Ya huh. I also can eat the non labeled Mission corn tortillas, and (don't laugh) even the very sensitive dog can eat the corn tortillas.

On the other hand, last week I just tried a new package of corn flour from a name brand which makes a lot of gluten free items, but did not label their corn meals as such, where I noticed they had changed the label to say "gluten free," so I bought some and I made some corn cakes, and I, whom am not that sensitive, reacted dreadfully.

I had a leftover cake I had stashed away, and because the dog pukes so spectacularly, no way is he getting it, either.

Guess I should email them.

Several days go by, and then my spouse douses my burger and home made potatoes 2 days in a row with a new bottle of "organic" ketchup labeled "gluten free," instead of the good ol' regular but non labeled, name brand, reputable ketchup. Guess what happens. Yep, he fell for the "organic" must mean trustworthy routine, even tho on the back this ketchup product is labeled "gluten free," it got me. So since this is the only thing I ate with any sort of commercial sauce on it for days, it wasn't hard to figure out, but I about had a cow when I saw the label - generic distilled vinegar and "made in a facility that also processes.... " and by a company that has a reputation for cross contamination. He had picked up a different brand of ketchup by mistake, but had made a good faith effort at label perusing.

The next time I eat ketchup, on fries, I am at a local burger place with dedicated fryers, who cut potatoes from raw ones, and all people who specifically comprehend the no - gluten routine, have fed me before safely, and can tell me the brand - and I don't react. I know many of you cannot do this, so I am deducting that the bottle of "organic, gluten free" ketchup I have at home is seriously messed up.

This is why we are easily frustrated. I don't eat out that often, and had a weekend where I ate (after the obligatory Inquisition) fries and ketchup, some frozen yogurt in a cup after studying the ingredients, and some gluten free pizza, at 3 different venues, with absolutely no problems, and the blasted organic gluten-free cc'd ketchup gets me at home. .

I've had the same thing happen with peanut butter, the "gluten free" version of one organic brand here in America made me feel slightly "off," and is "processed in a facility which may include ...." and the non gluten free brand, which specifies on the label that it is processed in a facility with "other tree nuts," does not do this. Gotten to where when I open a new jar of peanut butter, I just use a spoon for the first day, have a taste, and wait a few hours.

So here I am glopping non gluten free peanut butter, on a non gluten free tortilla from a labeling standpoint (but the company's websites are helpful as to status) and I'm better off than using the labeled alternatives - in certain other brands.

[eatmeat4good]

Takala!!

That is exactly what I was suspecting too. I just had not read this happening. Some people want to be gluten free but don't want to do all of the exhausting work of reading labels and yet....the gluten free stamp on the bottle or box is no kind of guarantee.

My sister only buys things labelled "gluten free". Thinking that she doesn't have to read labels then.

Me? I no longer fall for the hype. I appreciate their effort and all but my reactions are too serious.

Thanks for your story!

[T.H.]

Me? I no longer fall for the hype. I appreciate their effort and all but my reactions are too serious.

I know what you mean. It's really a shame, too, because some gluten-free companies are really trying to do a good job, watching cc and testing down to extremely low levels and everything. And then you have the ones that will put 'gluten free' on the label and it's essentially 'well, we didn't put any gluten there on purpose. That's the same thing as gluten free, right?'

And as for my list of safe foods, oh man is that short! I lost two of my biggest food staples a few months back. One company changed processing practices and the other - I have no clue. Just know I get sick off it every time now, and I tried a lot of variation to test that one as I didn't want to lose it! Without those, I've got an oil, a salt, and two grains that have been safe (if I wash the grains first).

But otherwise, it's all local stuff that I have to get from farmers and ranchers that I've talked to and tested out to make sure it was safe, or that I've started to grow myself now (I'm even trying to grow stevia, to see how that goes!). I get my soap from one of these, as well. A few things I'm going to try when my body is settled a bit more, but I keep getting zapped by little things so often that I don't get well enough to trial new foods as often as I'd like. :-(

We do use 7th Generation soap for dishes and that seems to work well. I have no toothpaste, so my dentist gets me this special flouride from a compounding pharmacy, where it's just the flouride powder and distilled water, and only lasts 2 weeks because there are no preservatives.

I have to say, there are some days I really miss when I could just pull into a Carl's Junior and get a whopping huge jalapeno cheese burger and fried zucchini. Man, those were good. Kind of miss the ease of that, almost more than the taste, ya know?