Labeled "gluten Free" Vs. No Gluten Listed In Label

[chilligirl]

I'm just wondering if everyone here only eats specialty items that are labeled "gluten free", or if y'all eat anything that doesn't list any gluten sources in the ingredients?

I was diagnosed with celiac in October (positive blood test), and have been eating gluten-free since early November. When I grocery shop, I read labels, but if it doesn't list any gluten sources, I'll eat it. However, I was recently talking with a woman I know who also has celiac disease, and she doesn't eat ANY prepared foods - she buys meat, veggies, fruit, rice, quinoa, etc., and makes everything from scratch. For instance, I'll use a salad dressing that doesn't list any gluten sources in the ingredients - she won't, she makes her own using oil, vinegar, and spices.

Am I wrong to be eating the way I do? I'm really careful and don't eat ANYTHING I haven't read the label for, or where there's risk of CC (like I won't eat homemade potato salad at someone else's house because their mayo may have been contaminated for example).

[GlutenFreeManna]

As long as you are not getting glutened all the time your approach is fine. I eat very similarly to the woman in your post because I have several other foods I need to avoid and it is just easier and cheaper to make my own stuff. All those salad dressings that may be gluten free use soybean oil. Many of the gluten free labeled products contain soy flour and/or milk. So I can't win either way with those foods. I have started to slowly venture into adding a few processed foods, but most of my processed food choices are things that are one or two ingredient items like rice paper wrappers (ingredients: rice, water.) or corn pasta (corn flour, water). The rice paper wrappers don't have "gluten free" on the label but I have not had a reaction so I'm pretty sure they are safe. The corn pasta is labeled gluten free. Point is, everyone has to do what works for them.

[psawyer]

I eat the way you do, and have for the ten years that I have been on the diet. I read labels. If there is an ingredient that is gluten, I put it back on the shelf. If there is a questionable ingredient, I look to see what company made it. There are a large number of companies whose policy it is that they will clearly disclose by name any gluten-containing grain. That list includes, among others, Kraft, ConAgra, General Mills, and Unilever. If the maker is on that list, I will eat the food.

In the US, there is still no legal defintion of "Gluten-Free." In Canada, there is a rule, but it only covers intentional ingredients, not cross-contamination, and it is, IMO, too wide reaching. You can not legally sell oats as gluten-free, no matter how pure they are. You can not legally sell gluten-free rice either.

[Skylark]

I eat the same way, checking ingredients. Since you're diagnosed with blood tests, Chiligirl, your doctor will probably want to test you in six months. If your antibodies are falling or gone, the diet you're following is working for you.

Your friend who does all the cooking might be super-sensitive. Some folks get so sick from traces of gluten that they find eating processed foods a little risky.

[Kim27]

Peter,

Does that mean you don't eat RICE?

[tarnalberry]

It's a personal decision. I go by what's in the ingredient list (with an eye on "manufactured on shared lines" sorts of warnings, though not so much for "in a shared facility"), since "gluten free" as a label itself doesn't have particular meaning in the US at this time. Some folks are sensitive enough, however, that they avoid prepackaged food due to cross contamination concerns, if not other intolerances. I mostly avoided prepackaged foods during my pregnancy, because I was happy to go (for me) a bit on the paranoid side about accidental gluten contamination during gestation. Now, I certainly don't cheat, and don't take risky chances, but I don't worry about the prepared items that I do eat. (Not that I eat that many anyway...)

[i-geek]

I'm kind of in between. If there are no gluten ingredients listed, the product is not likely to be CCed, and it wasn't produced on shared lines with wheat, I'll use it and so far that has worked well. But in general, we don't eat a lot of processed foods. Husband has allergies to some of the artificial preservatives and colors so it's safer for both of us to cook whole foods from scratch as much as possible.

[Tina B]

I'm just wondering if everyone here only eats specialty items that are labeled "gluten free", or if y'all eat anything that doesn't list any gluten sources in the ingredients?

I was diagnosed with celiac in October (positive blood test), and have been eating gluten-free since early November. When I grocery shop, I read labels, but if it doesn't list any gluten sources, I'll eat it. However, I was recently talking with a woman I know who also has celiac disease, and she doesn't eat ANY prepared foods - she buys meat, veggies, fruit, rice, quinoa, etc., and makes everything from scratch. For instance, I'll use a salad dressing that doesn't list any gluten sources in the ingredients - she won't, she makes her own using oil, vinegar, and spices.

Am I wrong to be eating the way I do? I'm really careful and don't eat ANYTHING I haven't read the label for, or where there's risk of CC (like I won't eat homemade potato salad at someone else's house because their mayo may have been contaminated for example).

I just look at the ingredients because years ago when I was diganosed there wasn't a lot of specific "gluten free" labeling so us old timers had to learn to read each label and know how to recognize things that might contain gluten ie: hydrolozed vegetable protein and modified food starch unless they tell you the source.

[kitgordon]

I'm just wondering if everyone here only eats specialty items that are labeled "gluten free", or if y'all eat anything that doesn't list any gluten sources in the ingredients?

I was diagnosed with celiac in October (positive blood test), and have been eating gluten-free since early November. When I grocery shop, I read labels, but if it doesn't list any gluten sources, I'll eat it. However, I was recently talking with a woman I know who also has celiac disease, and she doesn't eat ANY prepared foods - she buys meat, veggies, fruit, rice, quinoa, etc., and makes everything from scratch. For instance, I'll use a salad dressing that doesn't list any gluten sources in the ingredients - she won't, she makes her own using oil, vinegar, and spices.

Am I wrong to be eating the way I do? I'm really careful and don't eat ANYTHING I haven't read the label for, or where there's risk of CC (like I won't eat homemade potato salad at someone else's house because their mayo may have been contaminated for example).

I eat the way you do. As long as you are feeling well, I think it's fine. I don't seem to be especially sensitive to CC so far, and my GI issues have cleared up, so I figure it's working.

[Kim27]

I have been eating by eating gluten free labeled products, eating things I know don't have gluten (fruit, veggies, good meat), and also label reading. I have also been eating lots of white rice and also the UDI's Gluten Free Regular Granola. It seems to be okay and not have too much contamination because my TTG IGA levels dropped drastically in just 5 weeks of eating the way I do. (Went from 168 down to 65) (Hoping they are continuing to drop!)

[psawyer]

Peter,

Does that mean you don't eat RICE?

No, I eat rice. But, in Canada, you can not label rice as gluten-free. To legally sell "gluten-free x" the gluten-free status must be a distinguishing characteristic of this particular "x." Since all rice is inherently gluten-free, it would be misleading and illegal to sell "gluten-free rice" in Canada. You can put something on the package like, "Rice is a gluten-free food."

[buffettbride]

We eat many foods that aren't specifically labeled gluten free. Some examples are Kix, Trix, and Fruity Pebbles. There's companies we feel more confident about such as General Mills, Bush's Beans, etc.

There's a small trial and error period, but getting the hang of which food manufacturers to trust isn't so tricky.

[Kim27]

No, I eat rice. But, in Canada, you can not label rice as gluten-free. To legally sell "gluten-free x" the gluten-free status must be a distinguishing characteristic of this particular "x." Since all rice is inherently gluten-free, it would be misleading and illegal to sell "gluten-free rice" in Canada. You can put something on the package like, "Rice is a gluten-free food."

Ohh! I thought you were saying rice is inherently contaminated like people say oats are because of the way it grows in fields beside each other and can become contaminated from wind, prior planting, etc.

[Kim27]

We eat many foods that aren't specifically labeled gluten free. Some examples are Kix, Trix, and Fruity Pebbles. There's companies we feel more confident about such as General Mills, Bush's Beans, etc.

There's a small trial and error period, but getting the hang of which food manufacturers to trust isn't so tricky.

Kix and Trix????! Really!? I knew about and also eat Fruity Pebbles, but I had never heard that about Kix and Trix, that's great!

[chilligirl]

Thanks for all the responses! I'm in Canada, and it seems our labelling guidelines here are pretty good. I don't buy/eat anything that says "produced in a facility that also produces wheat" etc., or "may contain traces of wheat". I don't eat oats either, even the certified ones, just because my doc said I should avoid them for now since some people do react to oats. So it sounds like I'm on the right track.

The only "questionable" ingredients I'll still eat are caramel/caramel colour, however ONLY in products made in Canada or USA. I did a lot of reading and it seems that here in North America caramel/caramel colour come from corn, NOT from barley or wheat.

No idea really if I'm getting glutened. There's been a couple times after eating out that I've been fairly sure of it, but of course with being pregnant my digestive system is kind of all over the place anyway.

I went gluten-free on November 9th, and had bloodwork done in early March. My levels at that time had dropped from well over 200 to 89. Doc said they should have dropped more, and that I'm still getting gluten, likely from eating out in restaurants. So I've cut back drastically on the eating out. My next bloodwork is due the end of next month. Be interesting to see how the levels are then. Doc also admitted that we don't know how pregnancy and RA affect the recovery...

I was diagnosed by bloodtest, as I mentioned. My doc would have done a biopsy, but of course with my being pregnant that had to be put on hold. He wants me to do a challenge and then get biopsied once baby is six months old or so, however I'm pretty reluctant. I mean, what's the point? The doc and I spoke at length about what the blood test results mean, and whether a false positive was possible, or if the positive could be caused by a different autoimmune disease (I have rheumatoid arthritis also), and he was pretty adamant that it's a VERY specific test and the only thing that gives a positive is celiac disease...He also said with my initial numbers being sooooo high that there was no way I didn't have celiac.

Funnily, I'm not so sure I actually have RA, or if it's a "symptom" of gluten. My RA has always been serum negative, and the rheumatologist called it RA because that's what it most presents like, but said really there are so many types of immune-mediated arthritis it's impossible to diagnose every case. The RA was NOT responsive to medications, but basically went into remission on its own. Since being gluten free, my symptoms have decreased even further. But that's a whole other story...

[T.H.]

You're pregnant? Well congratulations! But also - that's a WHOLE 'nother ballgame.

Really and truly, you may want to consider making all food yourself or calling EVERY company to check on cross contamination, for the duration of the pregnancy. I haven't been pregnant while celiac positive, but I've read a few accounts from gals who have, and a number of their docs were pretty clear that pregnancy was the time to be absolutely strict about being gluten free, since nutrient deficiencies can affect your baby.

Have you checked out the pregnancy section? They seemed to have a lot of gals who have really been looking into what the latest research is on this sort of thing.

[The Glutenator]

Thanks for all the responses! I'm in Canada, and it seems our labelling guidelines here are pretty good. I don't buy/eat anything that says "produced in a facility that also produces wheat" etc., or "may contain traces of wheat".

Like tarnalberry said, I have also been OK with some products that say "produced in a facility that also manufactures wheat products" if I really like the product, but will find an alternative if I can. For example I really like Guiltless Gourmet nachos and haven't got sick off them. I do not, though, eat anything that says "may contain traces of ..." because that just sounds a lot riskier.

[chilligirl]

You're pregnant? Well congratulations! But also - that's a WHOLE 'nother ballgame.

Really and truly, you may want to consider making all food yourself or calling EVERY company to check on cross contamination, for the duration of the pregnancy. I haven't been pregnant while celiac positive, but I've read a few accounts from gals who have, and a number of their docs were pretty clear that pregnancy was the time to be absolutely strict about being gluten free, since nutrient deficiencies can affect your baby.

Have you checked out the pregnancy section? They seemed to have a lot of gals who have really been looking into what the latest research is on this sort of thing.

Well, I'm due in 2 days, so it's a bit late to start worrying

The timeline wasn't ideal - got the positive blood test for celiac in mid-October. Doc told me to keep eating gluten until after I saw the specialist and had a biopsy & scope done. Specialist appointment booked for mid November. Found out I was pregnant on November 7th (a Saturday), saw the doc on the 9th, and he confirmed I should go gluten-free immediately due to the pregnancy, and postpone the biopsy and scope. Saw the specialist later that week who made the diagnosis official, told me to eat gluten-free, take a good prenatal vitamin and extra folic acid and extra calcium on top of that, and that we'd talk about the scope and biopsy after baby was born.

I know normally you're not recommended to TTC until after a certain amount of time gluten-free in order to let the gut heal and malabsorption issues resolve themselves. However we'd been TTC for almost 5 years and had given up.

I know healing was going on during my pregnancy because I'm my doc's only patient who's iron levels have actually gone UP over the course of the pregnancy - most women experience a drop.

Anyway, baby is doing great and has been measuring a bit big all along, so I'm sure she's getting all she needs

[T.H.]

Oh I'm so glad it's healing up nicely! Phew!

I admit, I tend to worry some. We don't know when my celiac disease triggered, but during my last pregnancy, I vomited constantly, for the majority of the pregnancy, lost weight for the first half, all that good stuff. The only thing that made me stop vomiting as much was when i read some random study about cultures who don't have morning sickness and they are on islands where there is no wheat.

I stopped wheat (not gluten, though), and the nausea went WAY down. So sometimes I wonder if my celiac disease was triggered during that pregnancy. No real idea. My son has had many more health problems than his older sister, though, and it's always made me wonder if things might have been different if I'd avoided gluten altogether back then.

VERY glad to hear that your little midget is doing well and healthy, phew! Hope the birth is smooth as silk for ya!

Well, I'm due in 2 days, so it's a bit late to start worrying

The timeline wasn't ideal - got the positive blood test for celiac in mid-October. Doc told me to keep eating gluten until after I saw the specialist and had a biopsy & scope done. Specialist appointment booked for mid November. Found out I was pregnant on November 7th (a Saturday), saw the doc on the 9th, and he confirmed I should go gluten-free immediately due to the pregnancy, and postpone the biopsy and scope. Saw the specialist later that week who made the diagnosis official, told me to eat gluten-free, take a good prenatal vitamin and extra folic acid and extra calcium on top of that, and that we'd talk about the scope and biopsy after baby was born.

I know normally you're not recommended to TTC until after a certain amount of time gluten-free in order to let the gut heal and malabsorption issues resolve themselves. However we'd been TTC for almost 5 years and had given up.

I know healing was going on during my pregnancy because I'm my doc's only patient who's iron levels have actually gone UP over the course of the pregnancy - most women experience a drop.

Anyway, baby is doing great and has been measuring a bit big all along, so I'm sure she's getting all she needs

[Marz]

Oh I'm so glad it's healing up nicely! Phew!

I admit, I tend to worry some. We don't know when my celiac disease triggered, but during my last pregnancy, I vomited constantly, for the majority of the pregnancy, lost weight for the first half, all that good stuff. The only thing that made me stop vomiting as much was when i read some random study about cultures who don't have morning sickness and they are on islands where there is no wheat.

oh wow, that's very interesting about the wheat connection to morning sickness. I've read somewhere that morning sickness is a protection mechanism for the baby - making the mom super sensitive to chemicals in food that could harm the baby. Not sure how true that is.

[tooney]

I'm kind of in between. If there are no gluten ingredients listed, the product is not likely to be CCed, and it wasn't produced on shared lines with wheat, I'll use it and so far that has worked well. But in general, we don't eat a lot of processed foods. Husband has allergies to some of the artificial preservatives and colors so it's safer for both of us to cook whole foods from scratch as much as possible.

Hi! newly diagnosed with celiac disease!

I have noticed that on many ingre. listed that some state - this product was processed on a machine where wheat or other gluten ingre. were also. Is this being to picky or is this a no-no??

smp

[Kay DH]

Thanks for all the responses! I'm in Canada, and it seems our labelling guidelines here are pretty good. I don't buy/eat anything that says "produced in a facility that also produces wheat" etc., or "may contain traces of wheat". I don't eat oats either, even the certified ones, just because my doc said I should avoid them for now since some people do react to oats. So it sounds like I'm on the right track.

The only "questionable" ingredients I'll still eat are caramel/caramel colour, however ONLY in products made in Canada or USA. I did a lot of reading and it seems that here in North America caramel/caramel colour come from corn, NOT from barley or wheat.

No idea really if I'm getting glutened. There's been a couple times after eating out that I've been fairly sure of it, but of course with being pregnant my digestive system is kind of all over the place anyway.

I went gluten-free on November 9th, and had bloodwork done in early March. My levels at that time had dropped from well over 200 to 89. Doc said they should have dropped more, and that I'm still getting gluten, likely from eating out in restaurants. So I've cut back drastically on the eating out. My next bloodwork is due the end of next month. Be interesting to see how the levels are then. Doc also admitted that we don't know how pregnancy and RA affect the recovery...

I was diagnosed by bloodtest, as I mentioned. My doc would have done a biopsy, but of course with my being pregnant that had to be put on hold. He wants me to do a challenge and then get biopsied once baby is six months old or so, however I'm pretty reluctant. I mean, what's the point? The doc and I spoke at length about what the blood test results mean, and whether a false positive was possible, or if the positive could be caused by a different autoimmune disease (I have rheumatoid arthritis also), and he was pretty adamant that it's a VERY specific test and the only thing that gives a positive is celiac disease...He also said with my initial numbers being sooooo high that there was no way I didn't have celiac.

Funnily, I'm not so sure I actually have RA, or if it's a "symptom" of gluten. My RA has always been serum negative, and the rheumatologist called it RA because that's what it most presents like, but said really there are so many types of immune-mediated arthritis it's impossible to diagnose every case. The RA was NOT responsive to medications, but basically went into remission on its own. Since being gluten free, my symptoms have decreased even further. But that's a whole other story...

I've been gluten free since November. After getting H1N1 and high stress last September I started having GI and joint problems. My RA scale was not elevated enough for RA, but the joint stiffness and pain went away about a month after going completely gluten free (takes a while to realize where all of the attack glutens are hiding). My rash went away after 6 months (had it for about 40 years but never diagnosed as DH). All of my tests were negative, although the endoscopy was poorly done (1 week on gluten full and 1 biopsy). Bloodwork was after I was gluten-free. I am very sensitive to CC. I get glutened from gluten-free foods processed in plants that process wheat... If I get bad CC then the stiffness and D return for several days. I had reactive arthritis 20 years ago (HLA-B27), but it went away after 1.5 years and meds. Gluten free seems to keep GI, rash, stiffness, and other idiosyncrasies in control. It is so easy to get CC, especially if you eat out and are sensitive to gluten. I would get CC about a quarter of the times I ate out, and these were supposed to be gluten-free meals.

[i-geek]

Hi! newly diagnosed with celiac disease!

I have noticed that on many ingre. listed that some state - this product was processed on a machine where wheat or other gluten ingre. were also. Is this being to picky or is this a no-no??

smp

I generally avoid such products since cross-contamination is quite possible if the manufacturer doesn't thoroughly clean the lines after making a batch of gluten foods. I'm sure there are others who have no problem with such products, but I've been CCed enough times and paid the price for it that I don't take chances.

[Juliebove]

Most gluten free foods are not labeled as gluten-free. And even some that are labeled that way, really aren't! I have bought things with that label online, only to see that they are processed on equipment that processes wheat!

[Skylark]

Hi! newly diagnosed with celiac disease!

I have noticed that on many ingre. listed that some state - this product was processed on a machine where wheat or other gluten ingre. were also. Is this being to picky or is this a no-no??

smp

Depends on your individual tolerance to gluten. Some people are not bothered. Others who are pretty sensitive find that we react occasionally to "same equipment" labeled food. There are some folks on this board so sensitive they won't touch it, and they also have to avoid distilled vinegar and other foods that are usually safe for celiacs.

If you don't react to "same equipment" foods, the thing to do is get the followup tests from your doctor and make sure your antibodies are going away and your gut is healing on your chosen diet.