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NorthernElf

"gluten Free" Items That "got You"

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Wellshire Kids Dinosaur shaped chicken nuggets and Wellshire corn dogs were glutening my son. He had sporadic D and I could never figure out why, and his tTG entered the upper limit of the normal reference range. It was not until there was a Chicago Tribune article about this company posted here, that I figured out that it was the chicken nuggets and corn dogs that were making him sick. Their products are labeled gluten free, yet they were being manufactured on equipment shared with wheat. They also told me that since they are meat products, that they chose to follow the USDA "safe" levels, which is <200 ppm. Needless to say that I will NEVER buy another one of their products again! :angry: Now that I have removed Wellshire products from his diet, his tTG went back down to very low levels.

The Wellshire corn dogs . . . actually labeled "gluten-free" on the packaging . . . was the only thing that has gotten my daughter (not counting the time where she had something that had wheat listed as an ingredient - Doh!!)


Janet

Experience is what you get when you didn't get what you wanted.

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I find it so depressing that so many people tell us to trust them, and then gluten us. I'm with Steph, there is nearly nothing labeled "gluten free" that will not gluten me. for a long time, I didn't even realize I was being glutened...my glutened symptoms have changed over time, so I didn't realize they were symptoms of being glutened. Now, these incidents will be far and few between, simply because I refuse to believe these companies anymore.

There needs to be new FDA standards for "gluten free" for any of us to be safe. It's hard, especially for kids to give up foods they have always loved. So these companies play on that fact, to sell products. Yes, some of these companies are started by gluten free people, and they truly are trying to provide us with gluten free foods similiar to what we used to eat. Other companies are just there for the $$$$$. Bottom line is making money off those who need speciality foods. We know that already, just by the pricing of those items. They know we crave these foods, and we can only have them if "gluten free" so they capitalize on that very fact.

It's all very upsetting.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Arrowhead Mills flours. It was definitely CC, and happened with more than one type from them.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Wellshire farms nuggets and corn dogs got us too. I *thought* it might have been those that were making my dd sick, but I kept second guessing myself b/c the package said gluten free. Our diet is hard enough w/out companies knowingly putting out gluten free product that are contaminated. And the fact that their product is marketed for children makes it that much worse. It's just about money & the newest trend, screw consumer safety and any children who may get sick.


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Arrowhead Mills flours. It was definitely CC, and happened with more than one type from them.

Yes! I was glutened by Arrowhead Mills millet flour.


Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.

Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.

Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.

Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.

Gluten free since 25 Nov 2008

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Udi's bread in Denver gets me every time. It is the world best tasting gluten free bread and I can't eat it. I think it is because they only washed the lines when they converted over to gluten free, didn't replace them. Very low level of cross contamination but enough to keep me in the house near the restroom. I now buy only Outside the Breadbox from Colorado Springs.

Van's waffles. I just tried these last week. I had a reaction that I didn't know where it came from. Now I'm suspicious about the waffles. I won't be buying them again.

Lays potato chips. A shame but they might as well label them as process on wheat facilities. Something labeled like that almost always gets me. I now use Michael Season's low salt potato chips and they have not glutened me. And they are very good.

I use gluten ease for every meal I eat out. before that I was getting cc reactions at least 4 out of 5 times. Now almost never. I can't even remember the last time I had a problem.

This is a good thread. I hope more people list which items get them.

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I'm finding it very interesting that regardless of the laws in place we are not able to trust the labels. We have to rely on common sense and each other.

what laws? seriously? are there laws about this stuff?

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what laws? seriously? are there laws about this stuff?

There are very complicated legal requirements about labeling in the US and in Canada. There are probably many other countries with similar codes. Most ingredients that can be listed have rules about what they can and cannot be.

The law most discussed here is FALCPA (click here). It requires wheat to be disclosed in packaged food sold in the US, regardless of country of origin.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Here are mine:

Bonefish Grill - Caesar Salad - chef in error tossed my salad in same bowl as other salads containing croutons. He didn't catch the error till after I'd eaten it. The manager came out and told me what happened before we left. We hoped for the best but I woke up super sick...on a roadtrip, while out of town, for a funeral. It was miserable.

Lay's chips...any of them that are supposedly ok, are not ok for me.

Chik-Fil-A - Waffle fries. They advertise as cooked in a dedicated fryer but I did get glutened. I keep a food log so it was definitely this issue, plus my symptoms start within hours. :(

Publix blue corn tortilla chips

Vitamins - all gluten-free vitamins bother me

Kinnikinnick cookies

Bare Essentuals 100% Natural Lipstick (this one was a real humdinger!)

Dove soap

It's hit or miss with me, I have to be very careful.


Jeannie

Gluten-free since April 20, 2009 :)

Diagnosis through the years:

Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Endometriosis, Epstein-Barre Syndrome, Anemia, Interstitial Cystitis, severe (bladder ulcers...ouch!!) Bursitis. 11 surgeries, 2 years of previous Social Security disability, FMLA forever, one total hysterectomy (uteris fell even though NO KIDS) I'm probably forgetting a few. Lots of immune system problems.

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I've read that distilled spirits supposedly have the gluten distilled out, but mixed drinks have gotten me 2x. Once a couple of months ago on our 17th anniversary after the Melting Pot.

Didn't even make it home--sooooo embarrassing--at least we live on a darkened street where there aren't any houses for 300 yds. :P I marked the Maple, as my daughter now teases.

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Hormel Aus Juis pork. According to their website it's gluten free. According to my stomach not so much.


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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"I use gluten ease for every meal I eat out. before that I was getting cc reactions at least 4 out of 5 times. Now almost never. I can't even remember the last time I had a problem."

What is this? Where can I get some?

I have to eat out for my job, and could really use this.

Put me down for Bonefish-I'm not sure what got me but, it was aweful!


Sarah

"What comes around, goes around"

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What is this? Where can I get some?

I have to eat out for my job, and could really use this.

Hi Sarah,

It is Gluten Ease by Enzymedica. I take it along with their Digest Gold. They are both digestive enzymes.

We have it in our health food grocery stores but I'm sure you can get it on-line.

I still order everything in restaurants gluten free but now I almost never get cc issues. There are a number of different brands with similar products but I've only tried this one.

When I went on a world cruise, earlier this year, I took it almost 3 meals a day for 3.5 months. Sometimes I would forget and get glutened. Sometimes they would majorly gluten me and I got sick anyways but most of the time I did OK.

Cheers!

Michelle

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Sadly, the new Blue Diamond brand Nut Thins crackers don't work for me, which is a shame because they are delicious.

I am highly sensitive, and on the label it states that, while the crackers are routinely tested for low gluten levels (I applaud them for this), Nut Thins are manufactured in a plant that also processes wheat.

The first time I ate them, it was around the holidays, and I figured it must have been something else I ate, so I vowed to try them again.

The second time, I had a couple crackers in the morning, on an empty stomach, after having a good stretch without a "hit." No luck, I had a reaction very quickly afterwards. Good thing I was at home!

I envy those who can eat these crackers without a problem. They are very tasty!

I went gluten-free in September, and I'm still trying to get my Gliadin back to a normal level. Being glutened by "gluten-free" foods isn't helping, that's for sure.

Like so many of you here, I find I have difficulty with processed foods in general.

I am learning to always read the label, even if "wheat and gluten-free" is shining on the package in a neon sign. If it says there is wheat anywhere near the line, even if trace amounts, I must stay away. :( For me right now, it is probably best to avoid processed foods altogether.

I am being very strict these days - meat, vegetables, and fruit only, for the most part. I'm also buying organic whenever possible.


Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

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This thread is depressing. <_<

I guess I'm lucky because the only two times I've been full-blown glutened in the past 3 years were from movie theater popcorn (...I forget what company it was. But it wasn't Regal or Loewe's). And then, from a local cafe that purports to have a gluten-free kitchen etc. I ate there once, had their pizza, and was fine. I ate there a second time, had their greek salad and (hopefully) gluten free grilled cheese...and was not fine at all. Not sure which of the two caused the problem.

It's frustrating.


Gluten-free since January, 2007

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I keep getting glutened and don't know where. Does anybody ever have problems with Kinnikinnick products or freybe meats?

I haven't ever had an issue with Kinnie's products and I am very senstive. They are one of the few brands I can eat because they don't load everything with soy. I am not at all familiar with the meat brand you mention so I can't answer for that. If it is fresh unprocessed meat there should be no issue as long as no broth has been added.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Chik fil a's fries are not just "supposedly" fried in dedicated fryers. They are. But any fast food place can have CC.

Kinnikinick products are pretty much as safe as you can get. Certified suppliers and completely dedicated facilities. Either your gluten reaction did not come from a K product or something else was bothering you.

richard

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wow I eat Utz and Van's waffles all the time and have never had any issues! I get really sick off of Crystal Light though, but I don't think that has anything to do with a gluten issue. Might be the appertain?

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Well, since I've only been gluten free for five months now I haven't tried a lot of gluten free products, but here goes...

Hemp Milk -Pacific Foods

Almond Dream - after three days of drinking this, I noticed it right away. The Pacific Hemp Milk took a little longer. I was having such a mild reaction to it, but when I stopped drinking it I felt better.

Synthriod - I got a new prescription filled & started to feel very sick. After two weeks of taking it I was losing more weight, couldn't eat & had many other symptoms. I realized it was the medicine. A month after stopping it, I gained all of my ten pounds that I lost back! I wonder if the synthriod was bothering me the whole time I was gluten free. :o My doctors changed me to Levoxly & I'm not 100 % yet, but I'm doing So much better.

Rice Chex Strawberry & Cinnamon

So Delicious Kieffer Coconut Milk

I have to say I do love Glutino! When I eat anything processed I stick with products that aren't made on shared lines. I just don't trust them & it's not worth getting sick over!


Lisa

Infertility since 1995/Endometriosis

Hasimoto Thyroid disease 1998

Enlarged Abdominal Lymph nodes since 2003 - Stable

Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008

Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet

Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet

Celiac disease - positive upper endoscopy & Blood Test 9-2009

Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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Freybe's is great! Never get sick and never had a problem with Kinnikinnick...

I keep getting glutened and don't know where. Does anybody ever have problems with Kinnikinnick products or freybe meats?

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I got glutened at Outback the first time I ate there :( Now I'm scared to go back. I'm afraid my restaurant options are ZERO at this point.

I've been glutened 4 times by Mi Del Arrowroot cookies, sadly, I kept thinking each time, "Can't be, they say gluten free, and they're so good!" Now, after 2 weeks of being sick nearly every day, we're over. That relationship was not working. So sad, since they're so good and are labeled gluten free, but they are made in a shared facility, so I guess I took my chances.

It breaks my heart to get excited about products labeled gluten free, but unfortunately, even some of them aren't safe. Gluten free doesn't mean gluten free, it just means it contains less than ??? ppm of gluten. I'm becoming something of a cynic nowadays.


Gluten Free since October 2009

If evolution really works, how come mothers only have two hands?" - Milton Berle

"Life is 10 percent what happens to me and 90 percent how I react to it."--Lou Holtz

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Amy's frozen meals.

No problem with Chex or Kinnickinnick at all.

Won't go to Chipotle because no one there ever speaks English, even though only one thing in the whole danged store has gluten (flour tortillas).

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Lays and Kettle potato chips for sure, Classico pasta sauce, Amy's meals (took me awhile to figure out, the enchiladas were so good!!). There are so many things I've had CC reactions to, I pretty much stopped keeping track like I used to.

Pretty much any restaurant EXCEPT PF Chang's, and I've had better luck with Outback lately.

It actually makes me feel better to see the responses to this, sometimes I think I'm the only one and I'm crazy to blame it on these "gluten-free" products!!

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