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Glutened By Cereal Again

Rachel--24

By Rachel--24
in Coping with Celiac Disease

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Rachel--24 Collaborator
Rachel--24
Posted

OK...first I posted about getting glutened by Barbaras Bakery cereal and I told myself I would *always* check stuff out first before I eat it...at least by looking at the Delphi list.

I already forgot my own advice and this time I tried Health Valley rice chex cereal. The next day I felt glutened again. I looked at the Delphi list...of course "after the fact". Again it says no guarantee due to shared machinery. :angry:

It seems a little hard for me to believe that I could be reacting to these cereals because so many people here seem to tolerate them just fine. I'm getting frusterated about these mishaps and also not really knowing for sure if I'm getting glutened or if something else is going on. I dont ever have a problem with Cocoa Pebbles which has way more junk in it then the other healthier cereals so what gives? I'm trying to eat healthier stuff without preservatives and artificial stuff but I dont know if these cereals have trace amounts of gluten or what the problem is.

When that statement about "possible" cross-contamination or "can't guarantee" is seen on the Delphi list does that mean there is really a problem or the company is just CTA. If there was really a problem with contamination wouldnt they just not be on the list at all. :unsure:

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bluelotus Contributor
bluelotus
Posted

I agree that items that have such a risk should not be listed as gluten-free. No worries though, I am sensitive and have gotten sick from foods when there was only the contamination factor. It sucks. I too have to own up to the fact that I sometimes don't check my labels and lists until after the fact, though this has stopped for me (took over a year!).....and I haven't been glutened in two weeks!! That's the longest its been in about 4 months.

I also think its funny when companies that I have contacted email me back saying that there is a risk or there is low gluten, but people with gluten intolerance and celiac disease have varying sensitivities, so its best to talk to my doctor. Yeahhhhhh.....but, varying sensitivities doesn't mean varying intestinal damage or organ damage. Jerks.

I'm with ya all the way though. Our gluten situation needs to be treated with the seriousness that peanut allergies get.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm with ya all the way though.  Our gluten situation needs to be treated with the seriousness that peanut allergies get.

<{POST_SNAPBACK}>

Yeah...I'm really feeling that way now. Even though I get careless about checking the lists I feel that I'm being super catious otherwise. I've never eaten something with gluten in it (as an ingredient) yet I'm lucky if I can make it 2 weeeks w/out getting glutened. :( Its always due to contamination.

Anyways thanks for letting me know I'm not alone on this. ;)

bluelotus Contributor
bluelotus
Posted

My recent glutenings were not intentional consumption either. Nothing suspicious was listed as an ingrediant, so I ate the food or used the hairspray unknowingly. I even think that my suspicions of a corn intolerance may be false - I was likely still getting sick from gluten :( You are not alone at all in this. I submitted a comment for the FDA's labeling considerations in August (or was it September? can't remember) and I specified that contamination is an issue and that we deserve the same respect as those with severe peanut/shellfish/food allergies. Hope something comes out of it. I now no longer eat brands that I haven't tried before without contacting the company. I have also minimized the processed foods that I eat (aside from canned veggies or beans for soups and things or Enjoy life cookies and cereals).

Stinks that we have to go this far to keep ourselves safe. I am starting to feel jealous of others again (those without celiac disease) b/c I have had to cut back on my food choices to get this thing figured out. My family thinks I have completely lost my mind at this point (they can't believe hairspray or a safe-looking sauce could cause problems), but I say, oh well. I am feeling better now so something must be working.

Drew Newbie
Drew
Posted
When that statement about "possible" cross-contamination or "can't guarantee" is seen on the Delphi list does that mean there is really a problem or the company is just CTA. If there was really a problem with contamination wouldnt they just not be on the list at all.  :unsure:

<{POST_SNAPBACK}>

In the USA there is no standard for " Gluten Free" labeling. Many manufacturers seem to be putting that label on any food without those grains directly added, with absolutely no regard to cross contamination. Coss contamination or the possibility thereof is not an insignificant factor. That possibility makes that particular food a very poor choice for the gluten intolerant.

At this point there unfortunately seems to be only one solution which is to eat only whole foods prepared by yourself in your own kitchen. Not easy ! Good luck .

Carriefaith Enthusiast
Carriefaith
Posted
It seems a little hard for me to believe that I could be reacting to these cereals because so many people here seem to tolerate them just fine. I'm getting frusterated about these mishaps and also not really knowing for sure if I'm getting glutened or if something else is going on. I dont ever have a problem with Cocoa Pebbles which has way more junk in it then the other healthier cereals so what gives? I'm trying to eat healthier stuff without preservatives and artificial stuff but I dont know if these cereals have trace amounts of gluten or what the problem is.

When that statement about "possible" cross-contamination or "can't guarantee" is seen on the Delphi list does that mean there is really a problem or the company is just CTA. If there was really a problem with contamination wouldnt they just not be on the list at all.

I understand what you are going through. I personally don't understand why these products are listed if there is a chance of cross contamination. That's really annoying! I am super sensitive to the smallest amount of gluten, so I probably wouldn't be able to tolerate those cereals either. I actually don't eat cereal for breakfast and just stick with a variation of gluten-free bread, jam, orange juice, fruit, and blueberry smoothies. Sometimes I make an omelette if I have extra time. I hope this helps :)

Drew Newbie
Drew
Posted
Yeah...I'm really feeling that way now.  Even though I get careless about checking the lists I feel that I'm being super catious otherwise. I've never eaten something with gluten in it (as an ingredient) yet I'm lucky if I can make it 2 weeeks w/out getting glutened.  :(  Its always due to contamination.

Anyways thanks for letting me know I'm not alone on this.  ;)

<{POST_SNAPBACK}>

I too have not eaten ( for a year and a half ) anything with directly added glutenous ingredients. At first I did very well. Lately however I have been getting " zapped " with regularity.

When I first started the diet I did not know about the gluten-free lists nor were there so many processed foods (falsely) labelled "gluten free" at the time. I did quit well at that point and went many weeks without any problems. Then I discovered the Lists as well as the fact that a bunch of my favorite brands and foods were now available ( supposedly ! ) gluten free. Well I immediately started eating this stuff and rejoicing that my diet would be much less restricted. At this point though, I started getting symptoms of gluten ingestion over and over. I could not figure out what was going on with me untill I read a thread on this board where a woman got poisoned by some gluten-free labeled product, then she called the company and found out the product was actually heavily contaminated. Further investigation revealed that products sold by Bob's Red Mill as gluten-free were being bragged about on the companies website as containing " consistantly less tahn 20ppm gluten!" This is amount of gluten is not tolerable in a gluten-free diet and now I know what was messing me up since I ate their products regularly.

This is the thread that I feel saved my life ==> Open Original Shared Link

It clearly illustrates why we cannot trust any processed foods at this point whether they are labeled "gluten-free" or not.

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bluelotus Contributor
bluelotus
Posted

Yes, very familiar with the thread. Depressing isn't it? Gluten free should mean zero gluten.... end of story. I have been having the same contamination problem, I'd hate to speak for Rachel, but based on her recent stories, it appears that she has too. It sucks. I think I will have to start canning my own veggies and all that jazz. But who has the time?? I could honestly spend days canning and cooking for myself......

Carriefaith Enthusiast
Carriefaith
Posted
Further investigation revealed that products sold by Bob's Red Mill as gluten-free were being bragged about on the companies website as containing " consistantly less tahn 20ppm gluten!" This is completely insane and now I know what was messing me up since I ate their products regularly.
I agree. I am ultra sensitive to gluten. I had my worst gluten reaction ever from a Bob's Red Mill product, which was labeled gluten free :( The reaction was so bad and the severity of the reaction was really scary. I don't think that it is fair that these companies are advertising products to be gluten free when they aren't.
Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I agree. I am ultra sensitive to gluten. I had my worst gluten reaction ever from a Bob's Red Mill product, which was labeled gluten free  :(  The reaction was so bad and the severity of the reaction was really scary. I don't think that it is fair that these companies are advertising products to be gluten free when they aren't.

<{POST_SNAPBACK}>

I have reacted to every Bob's Red Mill product I've tried. They have gluten free labels on the front and they say that they are ELISA batch tested. Now I'm not trusting anything thats not made in a dedicated gluten-free facility. :(

Drew, I know what you mean because once I got my hands on the lists I started eating all sorts of things...thinking they were safe. Prior to diagnosis I was eating only meats and veggies because I didn't know what was making me sick but I felt better eating that way. Once I started adding all the cereals and other suppossedly gluten-free foods I started having reactions more and more often.

I'm not glad that you guys are going through the same cross-contamination problems but I'm glad to know I'm not the only one who gets sick from these foods. Makes me feel better to know I'm not totally crazy. I stare at the gluten-free labels on the products and wonder what my problem is. I must have looked at Bob's Red Mill package more than 20 times cuz I'm always thinking I'm missing something. :unsure:

Carriefaith Enthusiast
Carriefaith
Posted
I'm not glad that you guys are going through the same cross-contamination problems but I'm glad to know I'm not the only one who gets sick from these foods. Makes me feel better to know I'm not totally crazy. I stare at the gluten-free labels on the products and wonder what my problem is. I must have looked at Bob's Red Mill package more than 20 times cuz I'm always thinking I'm missing something.
I feel the same way and I feel like I am one of the most sensitive people to gluten in the world. I am currently going through yet another gluten reaction from what I believe is Club House vanilla extract. Now this product is gluten free, but they also say to avoid larger sized containers since there is a higher risk of cross-contamination. The container I used is larger than others so I'm assuming that this is my problem <_< Anyways, this has been happening far too often and I am almost embarrassed to tell people why I'm not feeling well. I want to go 100% non-mainstream, but it is so hard!

One thing I don't understand is why some of us are reacting to this stuff and others aren't? I'm totally clueless on this one.

bluelotus Contributor
bluelotus
Posted

I don't understand why its only some of us either. The 'old school' way of avoiding gluten was to read the ingrediants and that has seemed to serve most just fine. That doesn't cut it for me at all. I was fine for a few months at first when really restricted my diet, then I started trying the supposedly gluten-free things like you all and was getting sick again (and have been sick on and off for nearly 4 months). Maybe I need to go back to potatoes/rice, veggies, and meat again.

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