Help! How Strict?!

[katrinca]

I have been gluten-free and lactose free for over 2 years, but I'm still having problems. I'm going to get tested for other food allergies, but meanwhile, I have one question which NOBODY has been able to answer for me- how strict is "Strict"?

Should I only eat foods that are stamped "gluten free", or can I trust things like Heinz ketchup and Lay's potato chips. Does EVERY item in my kitchen need to be stamped "gluten free", or can I use foods from "safe food lists".

I consider myself a very strict celiac. I won't even go out to restaurants ever because I'm too nervous about cross-contamination. It would be a shame if I was poisoning myself accidentally.

Please help!!!

[Carriefaith]

Most people who don't have celiac would consider me VERY strict and almost obessive or paranoid about making sure the things I eat are gluten free. I am like you, I refuse to eat "out". I have had a few bad experiences and have learned the hard way that it isn't always safe even if you order from a gluten-free menu!

I eat things that aren't stamped gluten free but I make sure I read the ingredients very carefully and if something looks iffy then I reseach it on the net or don't eat it at all. I also eat foods from gluten free safe lists but I also read ingredients as products do change. I personally do not eat lays chips since there is a slight chance of cross contamination (it says on their web site) but I do eat Heinz ketchup.

Some people are more strict than others. There will be some people that won't eat mainstream products and others that do. I've even read that some people do not eat meat since cows, pigs, and chickens eat grains. I personally think though that if you're very careful with reading ingredients/labels and with cross-conatmaination issues than you should be fine.

[tarnalberry]

If you're still having problems, I am one of those that would advocate _trying_ cutting out packaged products. A recent study showed testing on items in mainstream stores that are supposed to be gluten-free had measurable contamination in over 33% of the cases (I think, it may have been higher). That's not to say you have to stay that way, but it's the biggest thing you don't have control over, so the easiest to test first.

[astyanax]

i was wondering how people feel about the fact that 'gluten free' still allows a certain amount of gluten in it. like would you eat something if you knew it had gluten in it (which i think most "gluten free" food does, but obviously an extremely small amount). i personally do eat "gluten free" foods, like pretzels, crackers, bread, pasta, even though i also try to eat a lot of meat, vegetables and fruits.

[tarnalberry]

well, in the US, there are no defined standards for what "gluten free" means - and for the most part, it means totally non-gluten ingredients, and often on dedicated lines - but not always.

[astyanax]

i'm talking about the euro standard, i've had US companies tell me they follow the euro standard cos the US doesn't have one

i find it hard to believe though that without any standard, US companies hold themselves to a tougher standard than euro products

[tarnalberry]

well... the thing is that the US companies tend not to use codex wheat starch, because US wheat starch is _definitely_ not "pure" enough. so you end up with gluten-free products that simply don't contain any ingredients that have gluten. of course, there's always the risk for cross contamination, which is where most of the problems from packaged foods comes from.

[astyanax]

here let me give an example of something that i'm very unsure about: ensure has a high fiber product that has oat fiber in it. when i called them they said that it met the euro standard for gluten free (the product is also listed on ensure's website as being gluten free) so i don't know if it's ok to drink it or not. i love ensure, and i really need fiber. it seems stupid to not drinking this product cos i happen to notice the word 'oat' on the label and i definitely trust the company if they say it meets the euro standard. ughhh now i'm confused

[Nadtorious]

Codex standards is 200 ppm-meaning that for every million parts of, say, rice flour, 200 of those can be wheat flour particles and it will stil be considered gluten free. Scary.

Bob's Red Mill is one of the few companies that actually says what their products tested for under Elisa testing-all under 15 ppm. I personally have reacted to Bob's sruff, so I avoid it. In order for a mainstream product to be considered gluten free, it need only contain no gluten-based ingredients. However, since many mainstream companies also make gluten-containing foods (and probably don't understand corss-contamination) who knows what's in the stuff. Back when I used to eat mainstream foods as part of my gluten-free diet, I was sick all the time. Go figure.

[tarnalberry]

I agree it's tricky - but it comes down to a judgement call. I don't think the CODEX standard is strict enough, and I don't eat oats, so I wouldn't drink the Ensure (there are other ways to get fiber - rice bran's a good one), but other people may. It's all a personal decision, when you get into this grey area. There isn't a strict right or wrong answer.

[katrinca]

Thanks to all of you for your feedback. I've never heard of Codex before, and now I'm scared. Does that really mean that any packed food labelled "gluten free" may have gluten in it? Is COdex the US national standard for gluten free foods?

I always thought I was safe if the label read "gluten freee"?

[Nadtorious]

O.K. I just rechecked and it's actually 500 parts per million allowed. So yes, that means that, according to the government, something can contain up to 500 ppm in order to be called gluten free. This is the reason I gave up on "gluten free" products.

Here's the link:

https://www.celiac.com/st_prod.html?p_prodid=208

Good luck. Some celiacs are a lot more tolerent to amounts like that than others.....I personally am not at all.

[tarnalberry]

Nadtorious, that's an old article from 2000, and I believe the update to CODEX has been completed so that it is now 200ppm, not 500ppm, which is what it used to be. CODEX is a European standard; the US does not currently have a standard. Part of the allergen labeling bill that was passed and signed this year requires a definition of "gluten free" for the US to be defined by 2006, so hopefully we'll see improvement in this situation in the next few years. They cannot ever make the requirement 0ppm, because you can't test to that level, but we'll see what they do decide to go with. (Quite honestly, I have a feeling they'll go with the CODEX standard without a LOT of input from celiacs. Even then, there's enough scientific evidence, study wise, to go with it, we may not get anything better than that.)

[seeking-wholeness]

Nadtorious,

Do you react to all of Bob's Red Mill products, or just some? I recently discovered that their corn products, soy flour, and hazelnut meal are processed on the GLUTEN lines for efficiency's sake! They don't carry the gluten-free logo, but that's easy to miss when you expect the product to be gluten-free.

--Sarah

[lovegrov]

I think the way Bob's marks its products is pretty clear. The ones with the gluten-free symbol are made in a gluten-free environment and the ones without aren't.

richard

[inmyhead]

I hope this is an appropriate place to ask this in regards to gluten strictness. I have contacted several manufactures about the potential for cross contamination. Even if the label states gluten free, the company is unwilling to guarantee that it is because the foods are produced on the same lines as gluten containing foods. Some companies claim they do a thorough cleaning job between batches but is this good enough? I am trying really hard to be gluten free, but what do you do if even the stuff that is supposed to be safe is not really safe? I know that they make no statements on the label, but I now know that Garden of Eatin Chips are unsafe to eat. My daughter, who is allergic to wheat, had a very bad reaction after eating their blue corn chips. I spoke with the Hain Celestial Group and was told that they could not guarantee that their products were gluten free. What are some safe snack food alternatives other than pretzels? I need something that crunches besides carrots.

[Carriefaith]

I'm not sure what to think about all this...... So gluten free products can have gluten but just small amounts???????

What are we supposed to do then. I depend on a lot of mainstream products that are gluten free everyday and I trust them (At least I used to anyway). I get severe reactions to gluten so I think that I would react if gluten was in the food. My life is way to busy to have to cook from scratch everytime I eat. I don't have the time or the patience.

It's not fair that we live in a gluten filled world.

[lovegrov]

The U.S. has no standards at all for what gluten-free means. And even if they did the simple fact is that if you eat processed foods you take a chance of getting gluten. A recent study showed that 20 percent of foods that the manufacturers said weren't supposed to have gluten did in fact have measurable gluten. These are mainstream foods, not specialty gluten-free foods. Was it enough to make somebody sick? Probably depends on the person. In nations that follow the codex regulations, gluten-free foods are allowed to have up to 200 ppm and still be called gluten-free.

I personally choose to eat some processed foods, even some that are made on non-dedicated lines but I also pay attention to complaints from others about contamination and avoid the products I see multiple complaints about.

richard

[Nadtorious]

Yes, Bob's Red Mill is very clear about their gluten-free products-I tried all their gluten-free flours, plus a couple rice cereals, and reacted to all. I know I am VERY sensitive-I have reacted to every "gluten free" bread product on the market I have tried thusfar. I have read a few articles stating that it is "nearly impossible" to make a product 100% gluten free, just because wheat flour is so fine and can easily become airborne. I sometimes react to going grocery shopping (I really don't like the baking aisle). I know that many celiacs are not as sensitive as I am. After eliminating all processed foods from my diet 2 months ago, I really have no celiac complaints anymore-other than my diet is incredibly boring and inconvenient!

Once I find the link to that article, I'll post it for you guys.

Nadia

[katrinca]

Medaka, I am with you!

So, what does all of this mean? For example, I buy Glutano cookies that say gluten free- are they really not gluten free? Annie's Naturals lists gluten free items- is that not OK?

I'm getting the point that it's based on personal sensitivity and choice.

I would love to hear from more people about their opinions of packaged products, both from specifically gluten-free producers, and from mainstream products.

And, thank you. This message board have provided me with real responses.

[tarnalberry]

While I generally shy away from packaged products because I'm a food snob, I try to learn the following information on things I buy:

1. type of food (plain anned tomatoes/beans/pumpkin, I generally don't worry about)

2. type of plant it's produced in (dedicated or not)

3. type of testing the company does (if they batch test or not)

4. type of reaction people here and on other boards report (does the company have a reputation for cross-contamination?)

Nadia, have you considered whether or not you're reacting to something else? Dairy gives me similar symptoms, and I believe there are a few other cross reactivities possible. I ask because the gluten-free labeled Bob's Red Mill products are tested down to 15ppm, and quite a number of studies have suggested that 200ppm really is safe (though I'm not going with CODEX just yet ;-) ), so I'm surprised that you're getting a reaction off of their gluten-free labeled stuff. I believe you're getting a reaction - of course - I don't mean to say that I think you're making anything up, just wondering if you've checked on dairy, corn, nut, or soy intolerances.

[Nadtorious]

Tiffany-

I've simplified my diet to the point where I know exactly what foods are giving me what kinds of reactions. I know that I am lactose intolerant-Dairy does a different kind of number on me than gluten does. I also know that I am intolerant to soy-feels very similar to lactose intolerance. My reactions to gluten cause bloating, fatigue, joint pain, not feeling satisfied after eating, anxiety, breathing problems, the whole nine yards, whereas lactose and soy just cause insane amounts of bloating. For a while I thought I was sensitive to nightshades, but I've pretty much ruled that out. Rice is definetly o.k.-I eat lundberg brand, which I pre-rinse and then steam. No problems. Eggs and meat are o.k., as long as the meat isn't injected with anything. Plain veggies and fruits......I'm so stinking bored with this diet, but anytime I try something new I react to it. Is this all in my head?

Thanks for the help-

Nadia

[tarnalberry]

That's good that you've got so much information about what bothers you.

I found that the best way to not get bored with my foods is to alter the spices. Italian spices, chinese spices, indian spices, and mexican spices all taste very different. Are you limited by what spices you can have?

[Nadtorious]

Unfortunately, I just reacted to one particular spice company's product over the weekend (I'd been questioning them for a while). My boyfriend got me a food dehydrator for my birthday last week, so I think I would like to start drying my own. I really love to cook, but I hate the fact that every time I do I feel like I get sick. We have no cross contamination in our kitchen-I'm so paranoid about reactions, so I know I'm cooking very safely, I just react to incredibly small amounts I guess. I eat a lot of rice and eggs-I try to get more fat in my diet because I need the calories too (avocados and olive oil).

[llj012564]

This has been very interesting to read all this stuff. I have been having problems with my diet for the last few months. When I first started gluten-free I ate only fresh no processed food but as I felt better I bought some of the gluten-free stuff from a local health food store thinking I was ok .... I missed crackers and stuff like that...... Well I have been feeling like crap and wasnt making the connection. Guess ill go back to nothing but fresh. Thanks for the heads up on labels.