Getting "glutened"

[elle's mom]

I am fairly new to all this & I've been reading a LOT of posts, so what I want to know is how often does the average celiac inadvertently get glutened? What I mean is purely accidentally by cc or by things labeled gluten-free that really aren't (less than 20ppm) etc.

Also, what is the longest someone whose been diagnosed for a long time (over a year) gone without "getting glutened"? I'm just curious.

[Switch2GF]

Tough questions, and I'm sure everyone has a different story.

If I don't ever take the chance, then I won't ever get glutened. Every time you eat something away from home, you are taking a chance. You can take all the precautions in the world, but it will eventually happen.

From experience, it doesn't happen accidentally very often, or at all. I have been accidentally glutened when I get careless and don't care to ask all the questions or someone doesn't have the answers. Sometimes I just take the chance to be able to go out to eat and enjoy meals with friends and family. I still make choices I believe are gluten free, but you can never be sure.

You could choose to eat every meal at home in your controlled environment, but then life would be no fun!

[shendler]

After I first went gluten free I had many more accidents than now (4 months gluten free). I would say things like narrowing down what products are safe, knowing how to read labels, being more careful while ordering out and knowing what restaurants have better practices..etc play a huge role. It would be interesting to see how often the average person consumes gluten by accident after being diagnosed.

[ElleReigh]

gluten-free for: 2 years

Record: 2 weeks without "glutening"

Right now: 4 days since last glutening by supposedly gluten-free Jennie-O Italian turkey sausage (for the second time, thought the first time was random CC)

Cheating: zero

Risky eating: less and less, until I thought it was zero, eating only out of my own gluten-free kitchen, but apparently not zero

Conclusion: I'm really sensitive. Seems to vary quite a bit from person to person. Good luck!

[Darn210]

My daughter is the Celiac. She is not sensitive.

She's been gluten free for 2 years and 4 months. It took about 10 months for her symptoms (acid reflux with regurgitation) to be completely gone. Since then, I would say that there have only been about three times where I "suspected" she might have gotten a little something but it absolutely could have also just been the "junk-food" factor of what she ate not agreeing with her. Her complaint was "it feels like I might spit-up". I would give her an antacid and then nothing else happened. . . . and for comparison sake, we do not have a gluten free kitchen and yes, she eats the fries at McDonalds.

[SGWhiskers]

I seem to follow ElleReigh's pattern. I'm 11 months gluten free and OCD about CC. My longest stretch was 5 weeks. Prior to that, it was 2.5 weeks. I do have a shared kitchen with very very minimal gluten. I don't think I've been getting sick from home though. Soap at work in combination with grapes, inhaled gluten, 2 of 4 restaraunt attempts, crummy children, bird food, handeling gluten, Rx pain releiver I assumed was safe, biting my nails have all been sources at least once. I'm getting pretty crazy about it though, and I've been able to go a little longer each time between glutenings.

Of course, I ran into someone at work who has Celiac, and he eats out all the time, described activities I would be sick for weeks from, and he says he sticks squarely to the diet. I agree, it seems to really vary by person.

I hope you are in the easy to keep away from glutenings.

I wonder if I accidentally ate a portion of gluten food if it would be worse than this minor CC. Although I feel crummy when I get CC, it is nothing like the pain before diagnosis or even in the weeks after diagnosis when I was still figuring out the diet.

Best wishes.

SGW

[celiac-mommy]

Both of my kids have Celiac. my dd is almost 8 and it's been well over a year since being glutened and she is SUPER sensitive-every time it has happened, it's been at a restaurant. My son is just now 4, he's not very careful and will eat anything you give him without a second thought, so preschool is a little difficult for all of us no matter how hard we all try. it has been a few months since he's been glutened and the longer he has been gluten-free, the more severe and swift the symptoms.

[elle's mom]

Thank you everyone for your replies! This is so interesting for me to hear........if you would, please keep them coming! What a great forum this is; my husband is making fun of me-he says I'm addicted because this is what I do every night now after the kids go to bed.

[ravenwoodglass]

I have been gluten free for 7 years. I was glutened a lot the first couple of years. I never eat out and most of my glutenings come from CC undeclared on labels and occasionally from my craft supplies or from having to do home repairs I can't afford to hire anyone else to do. I now get glutened maybe 4 or 5 times a year, not counting the times soy sneaks in. My reactions since diagnosis have become much more severe and it takes about 3 weeks for the effects to be totally gone.

[darlindeb25]

I have been gluten free for 9 years. I have NEVER intentionally eaten gluten in those 9 years, not once. From the time I went gluten free, I was adamant, there would be no gluten in my mouth. I missed foods, but never enough to be sick, I was so sick before.

Now, after 9 years, I realize I was glutened many times by products claiming to be gluten free. As I continue to tell people, a product can be labeled gluten free, and still contain 20ppm of gluten, which I find deplorable. Gluten free should mean, GLUTEN FREE. The rest should be labeled gluten lite. I am finding out, the only truly gluten free food, is one in which has nothing whatsoever to do with any type of grain...whole foods, veggies, fresh fruits, fresh meats.

I now realize I can't trust a gluten free label. I am super sensitive, and do not eat any grains...they all have the potential of being CC'd. Many of these companies will say, "We do not put/add any gluten to our products" yet, if the rice, corn, soy, etc comes to them already CC's, they also do not do testing for that. Some do, many don't. Besides the fact, even 5ppm is too much for me.

I was glutened a couple of weeks ago by SoDelicious Coconut Milk. I know there was no reason for gluten to be in the product, yet it is processed along with soy products, which gives it the potential for CC. My home is totally gluten free, nothing else new in my life, just the milk. The first two half gallons were ok, the 3rd one got me. I can't risk that chance...it takes me at least 3 weeks to recover, sometimes longer.

[tarnalberry]

Two or three times a year. Pretty much always due to eating out (which I do, on average, once a month or so). I have a mixed kitchen, but it is limited where the gluten can go and what can come in.

[ang1e0251]

I think there is a prettty sharp learning curve. I was glutened a lot in the beginning, mostly through my own ignorance. As I've worked through those problems and tightened up my eating, I have not reacted in some time. The last bad glutening was a year ago and I had a mild reaction about 2 months ago. I'm almost at the 2 year mark and doing better than ever. Money is still an issue so we seldom eat out. I probably won't change that much as our fortunes change because it is just so boring. I'm a little scared to try some of the dishes I might have before. I usually order plain meat with veggies and maybe a baked potato.

[Jestgar]

I assume I will get glutened every time I eat out. It actually happens about half the time, maybe less. I tend to frequent the restaurants where it doesn't happen .