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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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