Gluten Cross Contamination

In the past ten years I’ve seen a lot of changes take place for people who are on a gluten-free diet.  Most of it is good.  There is more and better information.  There are more and better products.  Food labeling has improved.  More people are discovering they have problems with gluten, and they are healthier on a gluten-free diet.  More doctors are aware of the prevalence of celiac disease, and some are even aware of non-celiac gluten sensitivity.

On the other hand, there is sometimes more confusion about the gluten-free diet.  All kinds of people give all kinds of advice, and some of it is bad advice.  Companies are anxious  to label their products gluten-free, but sometimes there is cross contamination, making it difficult for a consumer to know whether a product really is gluten free.  Companies also place warnings on their products to avoid a law suit, but the warnings often cause confusion or keep people from eating a product that actually is gluten free.

How do we know if a food truly is gluten free?

Determining a Safe Level of Gluten

No WheatThere is a proposed FDA standard (which has not been approved) to set the limit for the amount of gluten allowed in products labeled as gluten free at less than 20 parts per million (ppm).  Now some of you might ask, “If it’s gluten free, shouldn’t it be 0 ppm?”  That would certainly be ideal, but the fact of the matter is that for processed foods, that’s just not realistic.  There is too much gluten in our world for that to happen.  Keep in mind I’m talking about processed foods.  Things like fresh fruit and vegetables should be completely gluten free after being washed.  But even gluten free grains are at risk for cross contamination due to growing, harvesting, and packaging. According to an article in the current issue of Gluten-Free Living magazine, rice, amaranth, and quinoa have the lowest risk of cross contamination.  You can read more about and see results of a pilot study on the Gluten-Free Living blog.

For more information regarding the gluten-free labeling proposed rule, you can visit the Food & Drug Administrations questions & answers page.  In regard to the 20 ppm criteria the site states,

The level is proposed based on the available analytic methods. Data from peer-reviewed scientific literature demonstrate that current analytic technology can reliably and consistently detect gluten in wheat, rye, and barley at levels of 20 ppm in a variety of food matrices.

What concerns me about that statement is that there is no mention of what is safe for people who need to be on a gluten-free diet.  At one time the safe limit was considered to be 200 ppm, and we now know that was way too high.  Many people, myself included, believe that 20 ppm is too high also.  It may not be scientific, but when numerous people react to products that are tested to 20 ppm, it says something to me.

My Personal Experience

image I am not as sensitive to gluten as I used to be, but for years I was very sensitive.  It was always frustrating to hear people say that people’s reactions aren’t always due to gluten.  It’s true that people do react to other types of food, and every negative response our body has is not necessarily due to gluten.  But, I have certain reactions such as a particular abdominal pain, extreme and very sudden sleepiness, and mental reactions that I only get when I ingest gluten.  Of course, ingesting gluten is always accidental for me, and those symptoms can almost always be traced back to a specific source or a risky situation, such a eating at a restaurant.  I never get those particular symptoms when I have a stomach virus or other adverse reaction to food.  I believe many other people reporting reactions are the same way.  They know when they’ve been glutened.

Certification Programs

I appreciate companies who make efforts to provide safe food and believe the proposed standard is sufficient.  However, I will not eat those products on a regular basis.  I’m much more confident in products that participate in a gluten-free certification program, because the standards are usually higher, and because people outside the company are involved in the certification process.  GFCO is considered by many to be the best certification program.  They certify to less than 10 ppm  gluten.

What We Don’t Know

We don’t know how much gluten contamination there is for many foods, even some foods that are labeled gluten free.  There is also uncertainty about what level of gluten is truly safe, and whether that amount is different for different people.  I wholeheartedly agree with the idea that you should not base your decision of what is safe on your reactions alone.  There are people with celiac disease who have gotten diagnosed because of a family member, but they did not have symptoms, and still do not have symptoms even if they eat a piece of whole wheat bread.  Just because I am not as sensitive in my reactions as I used to be does not mean that a small amount of gluten is not causing an autoimmune response.  It simply means that I’m no longer reacting with obvious outward symptoms.

All this makes it difficult to know what is safe to eat, especially if you or your child does not react easily.  Many people with celiac disease monitor how well they are doing by having antibody blood tests done on a regular basis, such as yearly.  That can certainly be a helpful indicator, but whether it’s sufficient is a personal decision.  There is just no clear cut way to test for whether you are having a reaction to gluten after eating a particular food that likely has cross contamination.

At Home Testing

If you are interested, EZ Gluten sells test strips for detecting gluten in food samples.  It claims to be 99% accurate and tests to 10 ppm.  You can order different amounts of test strips ranging in cost from $12.50 – $10.50 per test.  I have not tried them personally, but you can read a review by Wendy of Celiacs in the House.

Conclusion

whole grain sorghumThe bottom line is that if you are eating any processed food, you are likely getting some amount of gluten in your diet.  Remember that processed can even refer to a basic grain.  For example, even though I mill many of my own flours, it does not guarantee that the flour is 100% gluten free due to cross contamination of grains. For that reason as well as others, we’re better off eating fewer grains and less processed foods and instead eating more fruits and vegetables.  I do love baking and eating baked goods, though, and I will continue to do it.  For me the key is moderation and making what I believe to be the safest choices.

Note:  My thanks to Shirley of gluten free easily for helping me to edit and clarify the information in this post.




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Comments

  1. The Gluten-free 'Dish' says:

    Linda,
    This article is very informative and will be very helpful to many in understanding this issue. I feel much better eating grain-free rather than just gluten-free. We still eat pancakes and enjoy food that I never knew was possible eating grain-free.
    God bless and keep you in His care!
    ~Debbie

  2. Wendy @Celiacs in the House says:

    Linda
    This is exactly the conclusion I have reached after this past year of trying to eat out more in restaurants and not being so strict with products labeled gluten free. The sad truth is that for my family we do need to be as close to 0 gluten as possible. The traveling I did in the past year was an eye-opener for me as I realized that no matter how careful I was and how I followed the rules of eating out, I was still getting glutened. Cross-contamination is the big issue. Great job of laying it all out and explaining it. I was reading along and nodding my head and saying yes the whole way through, then I saw my name. What a surprise.

  3. Stephanie says:

    Great post Linda! I agree, less grains/processed foods = better :)

  4. pilgrimscottage says:

    This is such a great post. I wish I could get my husband and family to read this so they could understand my gluten problem. Just the fact that having anything with gluten in the house gets me sick too often. I am sooo sensitive to gluten, I seem to have problems with almost anything that is packaged or boxed or whatever. Sticking to fruits and veggies seem to confirm it for me. When I get accidentally glutened, my mental symptoms are pretty bad (depression, anger for no reason) no matter how much I try to control them, along with lots of pain in my body. Linda, thank you for this post. I hope a lot of people read it.

  5. Margaret Kane Ward says:

    Very nice job of defining gluten-free versus grain-free and the challenges of each dietary choice. I'm new to the gluten-free diet — not for celiac, but to see if I have improvement with auto-immune issues. Thanks so much for such a lovely, plain-language discussion.

  6. There is so much good information in your post, especially for people who are newer to the gluten free diet.
    I absolutely agree that many people would be so much better off consuming less grain and certainly fewer packaged foods. I believe that limiting carbos is the major key to weight loss for the majority of people.
    Good job!

  7. gfe--gluten free easily says:

    You did such an excellent job on this post, Linda, laying out all the concerns. I share them all. I would sure love to have a gluten-detecting wand to pass over my food before I eat it each time. Until then I'll have to choose foods that are the least likely to have gluten with meats, seafood, fruit, and veggies in their natural states being at the top of the list and GFCO-certified processed products and grains. Unfortunately, there aren't too many of those currently that are GFCO certified, but maybe with this turn of events, companies will take that extra step to ensure they can provide safe gf products.

    I also want to thank you, Linda, because it was only in reading your article that I realized that millet flour and brown rice flour both might have been causing me issues the last several months. While rice is in the group least likely to have cross contamination as you cited, I have to wonder if a company without GFCO certification produces millet flour, sorghum flour, etc. which all showed high levels of gluten in the pilot study, then wouldn't all their "gluten-free" grains, even rice, be likely to be cross contaminated? Grain free and GFCO-certified products seem to be the way to go most often, but again I'd like that gluten detecting wand. It's a real dilemma and as Wendy tweeted this topic remains a "dirty little secret."

    Finally, thanks so much for the mention … I was happy to provide a small amount of input on your post. :-)

    Shirley

  8. stephanie @ gluten free by nature says:

    Linda-
    This is a wonderful post. And very well said.

    I just went through my cupboards about 2 weeks ago determined to find the culprit – something has been setting us all off. I was absolutely certain it was nothing I was buying – I've always been so careful. In an effort to finally solve the problem I gave all my suspect grains away (no fear – she is a non-celiac/non gluten sensitive individual who electively eats GF. Two weeks later, we are eating only grains that are 100% certified GF and the difference is amazing. No more agonizing episodes. We have so much healing to do and this effect of a "little here and a little there" was preventing us from gaining any ground: it was 1 step forward, 3 steps back. Finally we are onward and upward and all the healthier for it.

    Have a great week!
    Stephanie

  9. Sharae Peterson says:

    Very insightful article thank you. I was just wondering what kind of mill do you use to grind your flour? Thanks. Sharae

  10. Sharae ~ I have a Whisper Mill, now called a Wonder Mill. You can read more about it here:
    http://www.glutenfreehomemaker.com/2008/08/milling-your-own-gluten-free-flour.html

  11. Diane-The WHOLE Gang says:

    Great post! I'm a 0 gal myself. Very sensitive. I've stopped eating grains and only on a rare occasion will have quinoa. But like you said, there is still a chance.

    Our bodies really do the best with mostly vegetables and fruit with a little meat in there.

    All the info you have in here is great. I must share.

  12. glugleglutenfree says:

    A fabulous post, Linda. I really wish I had read this 4 years ago. It was finally moving out of LA and not eating out all the time that made me feel so much better. I just didn't want to give up my take out. But, I never developed any take-out crushes, so no issue. And, I like cooking our food myself more anyway. I think I will be making sure any grains I use have GFCO on them.

    Thanks,
    Tia

  13. Lisa H. says:

    Thank you so much for this info. As I have only been recently diagnosed with Coeliac Disease, I am so appreciative of any information out there.

  14. Kathryn says:

    In the past i've believed myself NOT to be highly gluten sensitive, but as time has passed i've changed my mind about this. It doesn't seem to take much these days to push my pain into a number much higher than i'm comfortable.

    What blows me away is a comment i've seen recently from some doctor stating that gluten is only problematic for diagnosed celiacs and that for others it could be "dangerous" to forego breads!

    I'm sad, sometimes, when i read GF blogs, however. I see the realization that eating GF is necessary as the doorway into healthy eating, away from the current SAD (Standard American) way of eating. But when i read about so many processed foods now available as GF that opportunity to eat whole foods and a healthier diet fades away.

    Not trying to get on anyone's case here, and occasional, rare treats like this are a delight. But i think what you outline, Linda, about whole foods and created at home meals are much healthier than relying on companies to turn out GF (but not healthy) processed stuff.

  15. Valerie @ City|Life|Eats says:

    This was a very helpful article, and I so appreciate it. I have been working with a gluten-free diet for 18 months now, which included two reintroductions and testing negative for Celiac's. About 6 months ago I decided that enough was enough, and despite not testing positive for Celiac's, I completely de-contaminated my kitchen. My husband now eats gluten at home only in very tightly circumscribed ways and it is kept away from the kitchen and any food preparation areas. Within two months I started feeling an improvement, but the true improvement started happening when I got away from grains altogether – while not grain-free (yet), I am definitely focusing on quinoa as my grain of choice. I seem to be fine with whole buckwheat and quinoa, but less so with the flours. I don't know how I will go 100% grain-free as I am intolerant to eggs (just had that reconfirmed today) and now also to flax seeds, although the hope is that the later is more temporary. Either way, I am still a work in progress and great information such as this article is so helpful to me.

  16. Tasty Eats At Home says:

    Great post, Linda. I too get similar reactions when I accidentally ingest gluten – especially the sudden sleepiness. While I try to eat unprocessed and truly safe as much as possible, there are times when that just can't happen, and I've fallen victim to cross-contamination from restaurants and the like. I think the more information we can get out there, the better!

  17. Miki Ruffino says:

    I am in the middle of a terrible reaction to “GF” brown rice flour… NEVER AGAIN!!!
    I’m wondering how it can be labeled GF when it IS NOT!!! Help!!!

    • Mikki, I’m so sorry to hear that, and I hope you are feeling better soon. Right now there are no laws to govern what can and can’t be labeled as gluten free. The rice flour clearly had cross contamination. If a company also processes gluten containing flours on the same equipment or in the same facility, it is likely to be contaminated, even if they clean the equipment. What brand was it?

  18. Thank you for this post! Your words were very reassuring for a person newly diagnosed. Dining out is a big part of my life with my husband, so learning about cross-contamination was important for me (and him) to understand. You’ve empowered me to be bolder about making my dietary needs clearer when we go out to eat.

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