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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

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How Sensitive Are You (Ppm)?
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4 posts in this topic

What level of ppm do other people find they react to?

Do you react to "gluten-free" <20ppm foods?

What about "certified gluten-free" <10ppm foods?

 

I believe I reacted to some <20ppm chips last week (I ate a lot of them over three days, unfortunately) and it just seems so crazy to me that such a small amount would cause such a huge reaction.  I did the math, and if I ate the entire bag of chips (which I don't think I did) it would only be just over 5mg of gluten all together over the three days.  I did eat some other gluten-free processed foods over those days (maybe some lunch meat, a tortilla, etc.) and so there may have been even more gluten in there adding to it.  Still, I've heard that 10mg per day is safe for most celiacs, and I can't imagine that I consumed more than 10mg of gluten per day even with all the processed foods.

 

I realize that there can be other food triggers (and I have discovered that I react to soy), but this was definitely a gluten-type reaction.  Fatigue, brain fog, anxiety, ADD, and horrible intestinal pain and bloating.  And I do realize that whole foods are better and would likely eliminate my issues, but I'm taking this one step at a time and I'm just not at a place where cutting out all processed foods is feasible.  So for now I'm interested in what levels of ppm are safe for other sensitive celiacs.

 

Thanks for your input!

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First, I just want to make sure you understand how these ppm tests work. If something tests ok on a <20 ppm test, that does not mean it has 19 parts per million. It could have 0 or 3.

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I think that I have reacted to food certified to less than 5 ppm gluten.  It is possible that they contained greater than that due to testing limitations.  It is also possilbe that they contained avenin, which gets me too.  It's also possible that something else was the cause.  It's really hard to know for sure.  There are quite a few celiacs who stick with whole foods.

 

This reference gives examples of people sensitive to very low levels: http://www.fda.gov/downloads/Food/FoodScienceResearch/UCM264152.pdf

It's a long read.

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for me, the gluten content is almost irrelevant.. if it's derived from a grain, i'm going to react. whether its down to 20ppm or 5ppm, i'll be getting sick no doubt! 

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