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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

When A Product Says It's Gluten Free But It's Not
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14 posts in this topic

Recently when I was in the States (I live in Canada), I noticed that a brand I trust Mary's crackers which says it's gluten free, also had a warning saying that it was prepared in a facility that also prepares products with wheat. This is a big concern for me, when I see Gluten Free on a label I expect it to be totally gluten free. It's hard to know what I can trust these days. Has anyone else had problems with products that claim to be gluten free?

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In the U.S., gluten-free doesn't necessarily mean zero gluten. While the FDA has not yet made their determination on labeling rules for gluten-free items, it is common practice to label anything gluten-free that has less than 20PPM (parts per million) of gluten protein. Anything under 20PPM is considered reaction-less for celiacs by most gastroenterologists.

Each country/area has their own rules for gluten-free designation. In Europe, they allow wheat starch in gluten-free items because the wheat starch has the protein processed out of it. I wouldn't put anything in my mouth that contained wheat starch, but apparently it isn't hurting European celiacs.

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Under 20 ppm is considered safe for most celiacs, but not all. There are some who react to much lower levels. I react to processed gluten free foods.

In the study used to get that figure of 20 ppm, one participant had to be removed from the study due to a clinical remission.

http://www.celiac.com/articles/1095/1/Research-Study-on-the-Establishment-of-a-Safe-Gluten-Threshold-for-Celiac-Disease-Patients/Page1.html

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In the US, there is no regulatory definition of gluten-free in place yet.

In Canada, there is a defintion in place, but it refers only to intentional ingredients. It says nothing about possible accidential contamination.

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Under 20 ppm is considered safe for most celiacs, but not all. There are some who react to much lower levels. I react to processed gluten free foods.

In the study used to get that figure of 20 ppm, one participant had to be removed from the study due to a clinical remission.

http://www.celiac.com/articles/1095/1/Research-Study-on-the-Establishment-of-a-Safe-Gluten-Threshold-for-Celiac-Disease-Patients/Page1.html

hmmm i guess this is why a lot of us feel better when we're eating naturally gluten free foods and not all the "treats/breads/cereals"... :( i try to keep them to a minimum, but it's hard

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It is a lot easier when they give you terrible symptoms. :P

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It is a lot easier when they give you terrible symptoms. :P

AMEN. That's the only reason I gave up my beloved cheese.

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AMEN. That's the only reason I gave up my beloved cheese.

I don't know if you are lactose intolerant or not but...

I thought that I was lactose intolerant but I looked at the lactose content of dairy and compared it to which dairy products bother me the most and it didn't make sense. I came across a study that found that breast milk can contain gluten.

http://www.ncbi.nlm.nih.gov/pubmed/9867098?dopt=Abstract

I am one of those super sensitive celiacs. If breast milk can contain gluten, why not cows milk? Maybe that was it.

I found a local farmer who sells milk, cheese, yogurt, and butter made from cows who are pasture fed and supplemented with soy and corn and not gluten grains! (I have no issue with soy except when it is contaminated with gluten.)

Now I am enjoying all that stuff again. The only problems is that the Farmer's Market shuts down in two weeks and this guy lives two hours away. I need to figure something out!

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I don't know if you are lactose intolerant or not but...

I thought that I was lactose intolerant but I looked at the lactose content of dairy and compared it to which dairy products bother me the most and it didn't make sense. I came across a study that found that breast milk can contain gluten.

http://www.ncbi.nlm.nih.gov/pubmed/9867098?dopt=Abstract

I am one of those super sensitive celiacs. If breast milk can contain gluten, why not cows milk? Maybe that was it.

I found a local farmer who sells milk, cheese, yogurt, and butter made from cows who are pasture fed and supplemented with soy and corn and not gluten grains! (I have no issue with soy except when it is contaminated with gluten.)

Now I am enjoying all that stuff again. The only problems is that the Farmer's Market shuts down in two weeks and this guy lives two hours away. I need to figure something out!

Milk, cheese, and butter can be frozen for longer storage. (although I find that once cheese has been frozen it tends to be very crumbly.) Yogurt is easy to make. How wonderful that you've found this farmer who is so conscientious about her dairy cows, and that you support her efforts. Good find!

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Under 20 ppm is considered safe for most celiacs, but not all. There are some who react to much lower levels. I react to processed gluten free foods.

In the study used to get that figure of 20 ppm, one participant had to be removed from the study due to a clinical remission.

http://www.celiac.com/articles/1095/1/Research-Study-on-the-Establishment-of-a-Safe-Gluten-Threshold-for-Celiac-Disease-Patients/Page1.html

I can believe this as I seem to react to a very small amount. I usually avoid all products that say that they are processed in a facility that also processes wheat products. Here in Canada Gluten free usually means gluten free facilities as well.

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hmmm i guess this is why a lot of us feel better when we're eating naturally gluten free foods and not all the "treats/breads/cereals"... :( i try to keep them to a minimum, but it's hard

It is hard..and bakeries that bake with gluten and produce gluten free products are the worst. I didn't realize at first but now I avoid them. Some products are okay if the facilities are gluten free.

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In the US, there is no regulatory definition of gluten-free in place yet.

In Canada, there is a defintion in place, but it refers only to intentional ingredients. It says nothing about possible accidential contamination.

Thanks for this information. I'll certainly be checking the packaging of what I buy more carefully from now on.

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It is a lot easier when they give you terrible symptoms. :P

True!!

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I don't know if you are lactose intolerant or not but...

I thought that I was lactose intolerant but I looked at the lactose content of dairy and compared it to which dairy products bother me the most and it didn't make sense. I came across a study that found that breast milk can contain gluten.

http://www.ncbi.nlm.nih.gov/pubmed/9867098?dopt=Abstract

I am one of those super sensitive celiacs. If breast milk can contain gluten, why not cows milk? Maybe that was it.

I found a local farmer who sells milk, cheese, yogurt, and butter made from cows who are pasture fed and supplemented with soy and corn and not gluten grains! (I have no issue with soy except when it is contaminated with gluten.)

Now I am enjoying all that stuff again. The only problems is that the Farmer's Market shuts down in two weeks and this guy lives two hours away. I need to figure something out!

Wow, that really opens up a can of worms! - I must admit that I've had some reactions to dairy and wondered if I should cut it out. Also the protein in dairy is quite similar to gluten apparently.

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