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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free Food But Says Less Than 20 Ppm Gluten? What Does That Mean?
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sharilee    1

I was diagnosed with celiac disease in late February 2012 after a positive biopsy. The symptoms got better at first then returned. So next step I cut out lactose and soy, still having symptoms. This weekend I was eating blue diamond crackers which were label gluten free but noticed on the box in very small print, tested to contain less than 20 ppm of gluten. So this got me wondering if the reason I am still having symptoms is because some of the labeled "gluten free" items I have eaten are not in fact truly gluten free. For the most part I have been avoiding any processed foods but with my work schedule it is a lot easier to pack lunch that does not have to be kept in the frig and snacks that are labeled gluten free like these crackers, rice cakes, etc. The processed gluten free labeled foods are a lot easier to take for lunch and snacks on work days.

So I am wondering if I am possibly still experiencing symptoms because I am getting gluten from these foods.

Any thoughts?

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Skylark    935

Yes, it's possible you are reacting. Not everyone tolerates the traces of gluten in grain-based foods. The proposed FDA standard is <20 ppm, which is why Blue Diamond and many other brands label gluten-free at <20 ppm. Even great GFCO certified brands like Udi's are only guaranteeing <10 ppm.

It's also possible you are reacting to all dairy rather than just lactose. There are a fair number of us who are casein sensitive. Casein sensitivity is probably more common than being unable to tolerate <20 ppm foods.

The easiest way to check (and I know it's a pain because I eat this way) is to get rid of all processed foods for a bit and only eat food you cooked from naturally gluten-free food. I carry a 6-pack sized, soft sided cooler with an ice pack to work every day. It wasn't expensive at all and it works well. Using a cooler makes easy to be able to bring foods that need to be kept cold like dinner leftovers, hard-boiled eggs, cheese, or sliced veggies.

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psawyer    687

A food which contains absolutely no gluten whatsoever will test as less than 20 ppm. Don't assume that the test sensitivity has anything to do with the actual content. Testing can not prove zero, and the more sensitive the test, the more it costs to do. Many manufacturers test at 20 ppm, as it seems to be a reasonable compromise. The primary reason for the testing is to detect accidental contamination.

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Skylark    935

A food which contains absolutely no gluten whatsoever will test as less than 20 ppm. Don't assume that the test sensitivity has anything to do with the actual content. Testing can not prove zero, and the more sensitive the test, the more it costs to do. Many manufacturers test at 20 ppm, as it seems to be a reasonable compromise. The primary reason for the testing is to detect accidental contamination.

True, but the threshold of the R5 elisa, the most common commercial gluten test, is <3 ppm. Udi's, Kinnikinick, and anyone GFCO certified is using a cutoff of <10 ppm. IMO the <20 ppm proposal in the FDA has nothing to do with safety for people with celiac or test limitations and everything to do with food conglomerate lobbying.

But that's neither here nor there. We have had board members who didn't recover until they went to a diet that consists of only naturally gluten-free foods. Marku Makki has mentioned running across people who were similarly sensitive in his peer-reviewed research.

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sharilee    1

Thank you for the information. I am going to try an all natural gluten free diet and also eliminate Casein and see what happens.

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Skylark    935

Good luck! Be sure you're off oats as well. Some people react to oats as if they were a gluten grain. There's recent research suggesting corn can be an issue for some folks as well.

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sharilee    1

Good luck! Be sure you're off oats as well. Some people react to oats as if they were a gluten grain. There's recent research suggesting corn can be an issue for some folks as well.

Thank you again. Last night I worked on a grocery list of naturally gluten free foods and worked out some menus for breakfast, lunch and dinner. Today after work going to the grocery store and stocking up. I still need to double check my vitamin supplements and medications, I know they are gluten free but going to check for soy and other possible triggers.

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I am one of the people on this board who did not get all the way better until I stopped eating most processed foods. I have even had problems with packaged naturally gluten free items. I was fortunate to have a GI doctor who was familiar with celiacs who react to very low levels of cc, so I found out about it from him. At that time, almost 5 years ago, there was very little information out there about it. This forum now has a super sensitive section which deals with that condition.

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sharilee    1

I am one of the people on this board who did not get all the way better until I stopped eating most processed foods. I have even had problems with packaged naturally gluten free items. I was fortunate to have a GI doctor who was familiar with celiacs who react to very low levels of cc, so I found out about it from him. At that time, almost 5 years ago, there was very little information out there about it. This forum now has a super sensitive section which deals with that condition.

Thank you for the information, I will check out the super sensitive section.

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