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Apparently... Walmart started off admirably and then chickened out. What's the point of labeling "naturally gluten free" anyway??? That's really a waste of effort. I appreciate the companies that have the confidence in their own practices and are brave enough to back it up with labeling. Do you hear me Pilgrim's Pride and Walmart?

There's so much out there about the increased risk. The perfect analogy is the 25 year cigarette smoker who finally got the strength to quit and five years later, he gets lung cancer anyways due to the past abuse. I can't deny that I worried about being that guy with respect to Celiac damage over approx 45+ years. About 1.5 years after going gluten-free, my villi was showing mild to moderate atrophy. That was a principle factor in my worrying RE cancer.

Are there any others out there who were undiagnosed and "glutened" for many years with thoughts on this?

I requsted the gluten-free status of some chicken from Pilgrims Pride, and they sent me this link:

Open Original Shared Link

hope this helps someone!

It looks like they have removed ALL GLUTEN FREE info from their website. Makes me wonder why???? Contaminated?

I read your reply in my other topic and noted how you were also a long term victim prior to diagnosis and going gluten-free. I thought you had a really positive attitude. There's so much out there about the increased risk. The perfect analogy is the 25 year cigarette smoker who finally got the strength to quit and five years later, he gets lung cancer anyways due to the past abuse. I can't deny that I worried about being that guy with respect to Celiac damage over approx 45+ years. There were so many medical mysteries as a small boy that apparently have become solved a couple years ago.

Do you have any good references on the diminished cancer risk for those who were undiagnosed for as many years as us before going gluten-free?

How have your recent EGD's looked? About 1.5 years after going gluten-free, my villi was showing mild to moderate atrophy. That was a principle factor in my worrying RE cancer.

Thanks for the replies.

Raven; you're kind of like me in that you got diagnosed late. Was your bloodwork messed up over the years in other areas such as liver, kidneys, other?

The wacked out thing with me was that my blood was always normal until the day we did the tTG-IgA.

I also wanted to clarify that my above noted bloodwork was AFTER several months of BRM-gluten-free Oats. Therefore, I'm wondering if it's possible to still be doing damage if the tTG-IGA and other Celiac profile bloodwork all comes back normal. Obviously, I'm not a false negative guy because I've had some very high positives when the celiac disease was found and shortly thereafter.

I was diagnosed in 2008. I found it by persisting with my doctor on a very mild abnormal liver blood test result. The result actually went back to normal just before my diagnosis. Previously, my blood was always normal. When I had my first tTg-IGA in 2008, the results were off the charts - as in insanely high. It took close to a year to get back to "negative."

Will it be a mysery or can I get some sense as to how long I have been triggered? Could it have been since childhood? That thought scares the crap out of me due to the cancer concerns.

Thoughts?

I've been gluten-free for 2.5 years, at least to the best of my knowledge. Diagnosed via EGD and blood in 2008. I don't get symptoms and wouldn't know if I was glutened. I began using Bob's Red Mill gluten-free Oats several months ago; about a half cup per day, five days per week. I began worrying if I could be getting a "reaction" or damaging myself. I got a Celiac panel along with a tTG-IGA and a complete blood profile. Everything came back normal/negative.

Am I doing a good job or could I be still hurting myself? I have lost some weight; about 7 to 10 lbs recently without trying. I reduced some sugars at nighht, but that can't account for all the weight loss.

I like their cream of mushroom and Manhattan clam chowder (read the label to make sure they haven't changed recently; I haven't had them in a while). They now have two versions of their New England clam chowder. One is gluten-free and one isn't, so read carefully.

richard

I spoke to Progresso directly about their clam chowder. They have two flavors: Rich & Hearty (gluten-free) and Traditional, which I assume is the one you are warning us about. The labels give no warnings in accordance to their response above in this topic. Also, if you're concerned about the pollock, the fish is in it's natural state, not processed. Please tell us how you know this to be contaminated with Gluten.

The "antibody levels" is exactly the issue for which I am seeking feedback.

I was diagnosed about 9 months ago. I went hard-core with gluten-free to the point where I don't eat at restaurants. In fact, I bring in tupperware! I prepare all my meals. I read the lables and write companies to verify gluten-free.. and just saying gluten-free isn't good enough. I have them tell me how they avoid cross contamination. I get a tTG-IGA about every 3 to 4 months. I got two tests over the past 30 days. Somehow, I am stuck at a weak positive result. I am either a 4 or 5 and the weak positive scale is 4 to 10. So, I tend to be on the low side of a weak positive, but clearly, I am not negative. So...

How much trouble am I in if I never pin-point the culprit food(s)? I am so fearful of the elevated cancer risk because I belive I have been triggered for aobut 15 years before finding out. I don't get any symptoms and since going gluten-free, I feel no different. If I keep getting the same blood test result, is my cancer risk level higher than a negative result of 2 or 3? Is the difference neglibible? Should I be worried?

Also, I can't find anythning that shows me concrete facts as to how much more of a cancer risk one would be if following a strictly gluten-free diet compared to one who is not Celiac. Because I have been triggered for so long without knowing, I am so afraid about being the case that develops cancer even a few years after going gluten-free. So obviously, I am obsesed over these tTG-IGA results.

I would really appreciate some facts. I'd like to get this stuff out of the forefront of my daily thoughts.

Thanks.

I boycotted Hershey's. They are NOT friendly or helpful to those of us with Celiac.

I called them to learn about Hershey's Dark Chocolate and Hershey's with Almonds. I got all kinds of squirming, cryptic talk, round about answers, nothing I could rely on beyond their boring plain milk chocolate bar. They told me I need to determine for myself if the ingredients are gluten-free. They said they would define what ingredients such as "PGPR" were and that the rest was up to me. COWARDS!

That's the kind of customer relations you can expect from Hersheys.

Frankly, I have boycotted Hershey's and Mars (makers of M&M's). They are NOT friendly or helpful to those of us with Celiac.

I called Hershey's and they told me they'd only verify that their boring milk chocolate bar was gluten-free. They said that they would only "look up" the ingredients of other products to define what they are and I had to determine for myself if they were gluten-free. Very weak.

Similarly, I emailed MARS to learn about the M&M's, M&M's with peanuts and the dark chocolate M&M's. I got some very cowardly response that stated that I need to read the labels and determine if there's gluten.

These responses from Hersheys and Mars are so weak... so whimpy.... so underhanded... COWARDLY! How the hell do I know what's been processed at their facilities, on their production lines, etc?

That's the kind of customer relations you can expect from Hersheys and Mars. Pretty sad!

My two reliable vices are Bob's Red Mill gluten-free Brownie mix (add nuts and gluten-free chocolate chips) and Edy's (or Dryers) Slow Churned Chocolate Fudge Chunk ice cream. Edy's verified in writing which flavors were gluten-free.

Daddy's gonna get his chocolate from reliable companies who are not afraid to confirm the gluten-free status of their products!! Daddy loooooves chocolate!

I think I figured it out.

First; there's no broth; just mushrooms, water and salt as someone above noted. I noted that the Walmart mushrooms can be made in different countries. The ones made in Vietnam and China are labeled gluten-free. I bet you anything it's because they are grown on farms that do not also grow wheat. Not much wheat in Asia; lots of harmless rice! When I get back home, I'm going to look at the labels that do not say gluten-free and see where they came from.

Anyone else have some insight on canned mushrooms containing only water and salt? It's got to be a farm thing.

If you go to some Wal-marts, you'll find the GV brand mushrooms warning that they're processed in a facility that also processes wheat. Yet, at a Wal-Mart in the midwest, I found that they are labled gluten-free. If you go to Wegmans (the leader in gluten-free labeling), ALL their canned vegatables are labled gluten-free EXCEPT the mushrooms. I ask the following:

1. What's the deal with canned mushrooms or mushrooms in general?

2. Should I trust the canned mushrooms despite the absence of a gluten-free declaration?

3. Anyone have a "reaction" or no "reaction" story to share with canned mushrooms (particularly Wal-Mart's)?

Can anyone enlighten me on this, please? You can't make Daddy's Famous Spicy North American Super Tasty Burrito Salad without the mushrooms....

Here's a follow up:

To date, I never heard a word from "Crystal." A week ago, I decided to give them one more chance. Nevermind it's been about 2 months since Crystal promised she'd call me with the vital gluten-free information. This time, I got Karen at the NY Call Center. I told her all about how I was trying to confirm a number of products with Crystal and that I was ignored. This time, I told Karen that I wanted to order about $290 of products, which was actually true. I told her it was vital that someone verified whether the products in question are gluten free and to respond to me so that I could purchase (if safe).

Karen was very sympathetic about Crystal's lack of responsibiltiy. I told her that I felt as though Vitamin World did not take Celiac Disease very seriously. She assured me that this time, she would return my call within 24 hours with answers.

Well, guess what kids!? NO REPLY!!!!

That sums up how concerned Vitamin World is about those who have Celiac Disease and want to use their products. Don't ask for gluten-free confirmations unless you have an eternity to wait for no answer! Sadly, Karen went from sympathetic to simply pathetic!

Thanks for the crappy CS and concern Vitamin World! Vitamin Shoppe, here I come.

I DON'T trust Bush's Best. I got that rubber stamp email from a Ms. Kenna Hess in June 2008 saying all their flavors were gluten free except the chili lines. Go read the labels of their honey flavor along with their Boston Baked Beans flavor. You will find MODIFIED FOOD STARCH in the ingredients. That means gluten to me. It doesn't say "modified corn starch" on the labels.

Research modified food starch throughout this very web site. You'll see very strong relationships with flour or wheat.

If Bush's uses corn starch, then why don't they say so on the labels???

Sometimes even contacting a manufacturer is not good enough.

I am very curious about NSI brand vitamins, minerals and herbs. I went to VitaCost.com and looked at labels. I didn't see a thing about any gluten free claims or labeling.

It appears that NSI gets a lot of favorable reviews. I had no luck in finding NSI's own website. It looks like they just list there products on vendor sites.

Does anyone have info on NSI? Has anyone contacted them? Any proof that their products are gluten free?

Does anyone have any experience with Vitamin World products? Any reactions? Can anyone here say it's safe from their own experiences? I'd really like to hear from you! I can't believe there's no one with any feedback.

Peter,

When was your last EDG? Are you going by reactions alone?

My goal, in this topic, is to learn what I can on my above noted products. Talking anything legal is like a virus in itself.

I'll only say that guarantee or not, if their labels don't disclose gluten containing ingredients and you use them for years, end up refractory or God forbid, with cancer, I'd say there's an attorney out there who is willing to say the maker is accountable, particularly if you contacted them via email and they responded that all gluten containing ingredients are clearly stated on the labels. 10 cases of the exact same nature can result in 10 different ways.

The bottom line is due dilligence on our part and as I have stated earlier, corroboration via personal experiences with products parallelled with consulting others as to their experiences.

It would be useful to know the exact conversation you had. In your description, you say they "couldn't guarantee their products to be gluten free." Who used the word "guarantee" first?

That word has a definite legal meaning that creates legal liability. I have learned to NEVER use that word in any conversation, as it immediately ends useful discussion and all subsequent questions are responded to defensively. No company's legal department is going to allow their representatives to use that word, and they will be extremely defensive if the customer uses it.

Kraft do label when there is shared equipment, if I recall correctly.

I elected to give Kraft a chance becasuse they will state, in writing, that if their products contain a gluten source (wheat, rye, etc.), it will be clearly labeled on the product. Now, if they got with their attorneys and found that it's safe for them to work around stating "GLUTEN-FREE" and not be accountable if gluten is found in their products, that would be pretty lousy of them. Therefore, I look for feedback from all of you as to any reactions with Kraft products. If I see that most all of you are doing OK, I'll sleep at night with their products in my kitchen. If the product doesn't clearly state "GLUTEN-FREE," I look to corroborate their claim if expressed more carefully.

Becasue of this, I am really struggling on finding ricotta cheese! (I'd really like to hear from a very sensitive member who has a brand of Ricotta that they can gobble down all day with no reaction. Please respond!!!)

JAIME: I saw your Wal-Mart Ricotta answer. I was just in one today and looked at their brand. I did not see "GLUTEN-FREE" on the package. I saw that they just list "vinegar" as others do. Are you a very sensitive Celiac? Do you tend to get reactions from items with Gluten?

Generally, my feeling is that things are either gluten free or they are not. I don't really want responses from companies that are tailored to sound good or appear to address my concern. That just doesn't do it for me and that's why the package will say gluten free or I won't buy it. From there, the company will tell me, with certainty, that it's gluten free, or I go to the next brand. If Wal-Mart, Wegmans and others have the guts to place GLUTEN-FREE in bold letters on their products, I expect others to know, with confidence, what's in theirs. Yes, it can be a pain, but that's the extent I will go through to ensure I am doing everything in my power to ELIMINATE gluten from my life.

There are plenty of companies that will state, without even knowing, that something is gluten free. Check out my post about Vitamin World. I have resolved to get rid of their products from my home and start over. I don't have time to risk my health and jerk around. They still haven't contacted me with their promised confirmation. Hello Vitamin Shoppe?

I actually hope to gain some of my weight back. The only issue I have with my appetite is that it's expensive and I have to cook everything. I'm very afraid of restaurants; I do not trust them. I've seen too much that makes me prefer to prepare my own foods.

Since I was diagnosed recently, I switched over to what I hope to be a gluten free diet. It's only been a couple weeks; but I'm noticing that as of about a week ago, my appetite has grown notably. I am eating large quantities of food; just like old bodybuilding days. I am training with about the same intensity as before, but make no mistake, I can eat that cow just to your right (in the Brown Cow ad) in one sitting!

Is this a sign of healing? Or, was the gluten foods simply more filling. What does this mean!?

I've been an "Anti-Glutenator" for a couple weeks. I'm over the shock and horror and now just doing what must be done. I don't get symptoms which is just as bad as it is good. If I eat gluten, I won't have a clue. So, accuracy with product info is an absolute must for me because my body won't warn me.

That being said, check out this story about a recent conversation with Vitamin World:

Last week, I was looking at all my Vitamin World labels. I have a couple hundred dollars worth of their products at any given time. I noticed on most labels have a "Free of" list and wheat is on a couple items. Most say "free of wheat." But as many of you gluten saavy members know, wheat free does not mean gluten free. I called Vitamin World (866-667-8977) and reached a "technical food specialist" named Crystal at X7582. She noted that unless I had product numbers, she could not help me. I told her that I could give her product names and the product numbers were on their own website. She was very polite, but repeated her "no numbers, no help" statement.

So, would you believe, that during a train ride home, I fired up my laptop, got on my wireless, went to Vitamin World's website and looked up each product for the number with Crystal on the cell! I can't belive Crystal couldn't or wouldn't do this. Right out of the gate, I mentioned Mega Vita Gel (product #1083). Here's the label for your reference:

Open Original Shared Link

I knew this product contained wheat as it clearly states below the nutritional information box. Yet, when I asked Crystal about it, she said it was gluten-free. I couldn't believe it. I asked, "are you sure?" She said, "absolutely." She continued, "I'm looking at two databases and they both say gluten free." I was speechless as I realized that people place their health on the line for advice like this. Remember, this is the person who wouldn't go on to her own company's website. So, I had to describe the label to her and that it clearly noted WHEAT as a warning... She began to sound confused and stated that the label must be old and therefore, was inaccurate. I asked, "if the label was old, does it follow that the product is likewise old and therefore, contains wheat? She insisted all products were fresh and repeated her "two database" findings. It goes without saying that I'm struggling with Crystal's credibility; not to mention Vitamin World brand freshness and accuracy. Either way, it appears I'm in trouble.

Let me be clear about something here. I am NOT a vendor. I don't sell vitamins. I have no interest or affiliation with Vitamin World, it's competitors, Celiac.com or any entity that might have an ax to grind. I'm just a guy who found out he has Celiac and I take vitamins. I want to keep taking vitamins, but I want decent quality that is not insanely priced. That eliminates most companies.

I desperately hoped that I would learn that Vitamin World would be OK. But now, I couldn't trust them if my life depended on it (and it might)! Crystal promised she'd get back to me with some facts to corroborate her databases. It comes as no surprise that I heard NOTHING from her since.

I posted this incident to get some feedback from my fellow members here specifically about Vitamin World. I would love to learn that some of you very sensitive card-holders of the Celiac life take Vitamin World products with no issues. If you're out there, please respond. Because until I find otherwise, it looks like Vitamin World can't be trusted. I imagine some of you will tell me about other brands. If you do, I'm specifically looking for gel or capsules. But I'd really like to hear from some of you on Vitamin World.

Thanks for reading.

I'm trying to get confirmation on the following products:

1. Old El Paso Stand 'n Stuff Corn Taco Shells (contains hydrogenated oils),

2. Isopure Zero Carb protein powders (manufactured in a facility that processes wheat. Anyone use this stuff?)

3. Vitamin World brand vitamins (These guys scare me. They contradicted their own lables over the phone!):

4. Ricotta Cheese (every brand only says "vinegar." Unknown if distilled):

If anyone has some info on the following items, please respond.

Thanks to everyone for the feedback and support. I'm very sorry that I am responding late but I'd like to follow up and answer some questions via this update:

I have no other conditions or symptoms. So far, Just Celiac. I got my confirmation just yesterday with the scope (EDG) lab report. I'm a C3 (severe). The cool thing is that my PA also has Celiac. She was helpful. But she made a bad assumption. she said she thought I might have been "triggered" for only a year. My theory is that it's been at least 10 years. I used to be a bodybuilder and to most, I look like I'm in shape. However, I have slowly lost about 23 pounds and those that knew me over the past 10 years have reminded me how I am "shrinking." As previously noted, my strength and energy has gone down. I get tired easy during late afternoons if I worked out in the morning or if I was having a stressful day.

We're now going to follow up with a number of tests; bone density, vitamin absorbtion, cancer scans, etc. I admit, I am a little paranoid about the cancer aspect of this disease; i.e. having it for a long time before finding out and changing the diet.

I didn't wait for my confirmation and began to change my diet, but along the way, I am finding that I have been a victim of hidden gluten. Most recently, a damn Hershey's dark chocolate miniature. God, that irritates the (explorative) out of me. But the mellodrama and self pity is about over and I am focused on being strict. I am also excited to get some of my weight and strength back. It's easier to be more positive.

I'm still stressed out over the travel part. I've been on two domestic trips. It hasn't been easy. I already made a customized form for restaurants. This is the part (along with concerns over cancer) that I dread. I can deal with every other aspect.

I've been writing companies and it surprises me how many actually fail to respond. Kind of a drag. I'm dying to find out if my 8 O'clock brand Hazelnut whole bean coffe is gluten-free or not. Anyone know?

I will make a seperate post about a recent contact with Vitamin World. Very scary conversation.

Anyway, I welcome your contacts, email, replies. I have quite a bit to learn and perfect with the gluten-free life.

Thank you all once again.

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