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Safe Lists?


mcle8232

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mcle8232 Apprentice

I have less and less trust each day in these so-called safe lists of supposed gluten-free food like the one published by ROCK (raising our celiac kids).

Dinty Moore, for example - BIG no, no for me. I was sicker than a dog when I tried nearly ALL of the processed foods on their list.

I get the DH too so not only am I miserable on the inside, I look miserable on the outside too. I try to cover up the blisters on my face w/ make-up each morning.

Maybe I'm a human gluten detector and I should be patented as "an even more sensitive test than ELISA" for gluten testing. At least then my suffering might be for a good cause. Seriously though, are these foods really gluten-free?

I have no food allergies - both my arms were poked from top to bottom for testing. I do have an allergic reaction to "grasses" -- but I don't plan on eating them anytime soon!! I guess I'm not that desperate :lol:


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angel-jd1 Community Regular

Any list is out of date as soon as it is printed. Things constantly change. That is why you have to take it upon yourself and call the company directly. The lists are there to give you an idea of what you can have, or a guide. You really need to double check it on your own. I would never depend totally upon a list. I always call and confirm on my own. Gives me piece of mind to hear it for myself anyways.

-Jessica :rolleyes:

celiac3270 Collaborator

The lists aren't correct--you always need to call, unless the company has a labeling policy, such as Kraft. Clan Thompson books are nice because they include date of verification and PHONE NUMBERS in their pocket-sized food and medication booklets. These are nice because some products don't have the number on the package.

KaitiUSA Enthusiast

Yes, lists change frequently and you should call about a product rather than assuming it is gluten free. Ingredients change on products more frequently then we realize.

With companies like Kraft, and General Mills a list is not necessary. All you have to do is check the label with their products and unless it says wheat,rye,barley, or oats then it is safe because they will not hide anything. I try to stick with brands like that whenever I can.

mcle8232 Apprentice

Thanks for your insight... I really appreciate it! I must admit that I am a tad lazy when it comes to contacting companies about gluten content. I've also gotten frustrated with the few I actually did try to get info from b/c their responses were so ambiguous I wondered why I went to the trouble to look up their contact info.

:(

Anyway, I've been searching for tried and true gluten-free items on the internet trying to shortcut it. I currently weigh in at ~108 lbs and am constantly wondering what I can eat. After a year of chicken and rice (w/ fruit as a snack) I'm striving to add a little variety. You're right though -- I best start picking up the phone. It's the only way. --Thanks again!

:)

Guest nini

I've had reactions to so called gluten-free foods on "safe lists" and even checked the label, especially processed foods like Dinty Moore...

I now try to stick with companies like Kraft and ConAgra that have a labeling policy intact, but I'm even more supportive of companies that CLEARLY LABEL which of their product as gluten free.

Annie's Naturals, Amy's Organics, Erewhon, Envirokids (for example)

flagbabyds Collaborator

You can't trust anything unless you're heard it yourself directly from the company


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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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