Still Getting Gluten Part 1 – Gluten-Free Food

wheat fieldNot long ago I had an email from a reader whose daughter has celiac disease.  She does not have outward symptoms when she eats gluten which means her parents have to rely on labels, certification, and manufacturer gluten-free claims.

He was frustrated because they try to be so careful with what she eats, but blood tests are still showing that she is getting gluten.

Another reader has been gluten free for a while, but is still sick.  It turns out she was not using a dedicated toaster and didn’t know if that could be the problem.

Sometimes we do our best, but find that it’s not enough.  For anyone in a similar situation, I thought I would give some suggestions.  I have broken this down into a three part series that I will post on Fridays for the next few weeks.

Make Sure the Food You Eat is Gluten Free

This seems obvious, but it’s not always easy to know if food is truly gluten free.

food label

Gluten-Free Labeling: There are currently no regulations on labeling a food as gluten free.  The proposed level of allowable gluten is 20 parts per million (ppm), and some manufacturers use that as a guide.

One such company is General Mills which produces products such as gluten-free Chex cereal, gluten-free Bisquick, and gluten-free Betty Crocker dessert mixes.  While I appreciate their efforts to make gluten-free products, the fact is that many people, including my son, react to their products.

This situation could happen because a company’s products are less than 20 ppm, but that level is too high and still causes reactions.  Or it could be that the final product is actually higher than 20 ppm.  This can happen if a company is testing their products at certain points, but not doing enough testing on the final products.

The bottom line is that just because a product says it is gluten free does not mean it it won’t make you sick.

gluten free Certification: I prefer to use products that are certified by the GFCO and are tested to 10 ppm.  I have much more confidence in such products, but even then you should keep in mind that a certification organization cannot ensure that everything is complied with all the time.

A Personal Experience: Recently I attended a gluten free vendor fair that my support group hosted.  I came home with a lot of gluten-free samples that I thought would be perfect for my son to take to school.  The companies were either strictly gluten free companies or had high levels of testing and/or certification.  I was pretty confident that all the products would be safe for him to use.

But guess what?  He had a little diarrhea the first couple of days, and then a day where he had it throughout the day at school.  This son is not a little boy.  He is in college and can take care of himself, but I still feel terrible when something like that happens.  I gave him that food.

bowl of cereal

Processed Foods: Processed foods by nature carry some risk of cross contamination.  If you are having problems, you might want to consider cutting them out all together for a while and then using only products in which you have very high confidence.

In particular, I would say that from my experience the types of processed foods that carry the highest amount of risk are foods that include flour such as cereals, mixes, and baked goods.

pills

Medications, Vitamins, and Supplements

While these items are not food, they do go through your digestive system.  Double check all medications, vitamins, and other supplements.  GlutenFreeDrugs.com is a good source for checking on medications.  You can also call drug manufacturers or have the pharmacy do so.  Some vitamin brands now include “free of” type statements.  Look for ones that are labeled gluten free or contact the company.

Part 2: Eating in Your Home

Part 3: Eating Outside Your Home

Related post: Gluten Cross Contamination

The Gluten Free Survival Guide is a very practical and thorough eBook which I recommend to beginners.  The link to the survival guide is an affiliate link which will take you to another site.




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Comments

  1. Liked what you had to say on all the ways we can get glutenized without knowing it. It was processed foods for me. They said they were gluten free but once I stopped eating them all my symptoms went away.

  2. Thanks for reminder about medications.. That’s one thing that I initially overlooked.

  3. Good point that foods labeled gluten free may actually not be GF, but only below a certain level. I’ve long had that problem with lactose, where it sometimes say “lactose free” but I still get stomach problems. Turns out it sometimes has a miniscule amount of lactose in there, but that’s all it takes for me — no possiblity of cheating, even the smallest amounts. With gluten, it’s harder for me to tell and thus, I might still be getting glutened without my knowledge and attributing any symptoms to a variety of other reasons. Sneaky.

  4. Melissa says:

    Something else to keep in mind besides just medications is any hygiene products that go in or around the mouth, such as toothpaste, flavored dental floss, mouthwash, breath mints, chap stick, even the flavored polishing paste used to clean your teeth at the dentist’s office. I’ve learned the hard way on most all of those items!

  5. Thanks for this article, I have been GF for 1 year. I was so excited to see the GF claim on Chex, but both times I’ve tried it, I have had a reaction. Glad to know it wasn’t just me! I thought I was being paranoid ;)

  6. Great post, Linda! I think that most of the time we are getting glutened by products we think are safe. Since I’ve had a gluten reaction to a product that’s certified GFCO most recently (and confirmed that it wasn’t a fluke by trying some more than once), it’s reaffirmed my desire to eat whole foods as much as possible. Sadly, it seems GFCO certification isn’t foolproof either. Appreciate Frazzled Mamas input on the General Mills “gluten-free” products very much. I think there’s a very large group of folks out there that has issues with their products.

    Shirley

  7. I’m still having some “bad days” – I thougth maybe it was the new medication I was taking but both meds I’m taking are on the GF list. Sigh.

  8. I just read this post on my facebook page. My husband was diagnosed with celiac disease in 2010. He loves Chex cereals and other foods that are labelled gluten free. Like the person who you mentioned, it’s a “double-whammy” for my husband since he experiences no immediate symptoms after contact with gluten. So we are very careful to make sure labels indicate gluten free foods. However, you indicate that the labels might not be good enough. Are you suggesting that we cut out all but certified gluten free foods? And even then it’s not always accurate?

    • Less than 20 ppm gluten is considered safe for celiacs by the medical community. However, some people still have reactions to products that test to that level or lower. I think those people need to be aware that foods labeled gf could be causing their symptoms. It’s difficult in cases like your husband’s where there are no immediate symptoms. It might be a good idea to have the blood test done periodically to see if he is still producing antibodies.

  9. Colleen says:

    Thank you for this post. I have been trying to figure out what I ate at a Super Bowl party that made me have symptoms…. After reading this, I am sure it was the Betty Crocker GF cupcakes I made.
    Thank you!

  10. Jessica says:

    PLEASE READ: There is a big possibility that if you are still having problems like I did when I went ‘gluten free’, I felt a little better but was still having a lot of issues, you could be reacting to other proteins that are very similar to wheat gluten the body identifies & reacts to just like the wheat gluten. Thankfully I found a naturopath that is up on current testing & did the Gluten-Associated Cross-Reactive Foods and Foods Sensitivity that http://www.cyrexlabs.com has developed. This test is so vital! We need to start sharing this with everyone who has CD. I react to amaranth, tapioca, coffee & yeast(the yeast is the worst). It helped others with CD besides me, my sister’s (all 3 of us have CD, one reacted highly to oats!), a nephew(his major one is corn, poor guy), a friend(she reacts to several grains often used in GF products). Please find someone that can give you these tests and spread the word to our other CD sufferers!! And do yourself another favor & get basic food allergy tests done, that will help you too! http://www.drperlmutter.com/eat/foods-that-cross-react-with-gluten/

  11. Gailann Lawton says:

    Very informative I look forward to the next two.

  12. melanie silver says:

    hi,
    I find i react to too much xanthan gum in gf foods. so sometimes its hard to find something without too much

  13. There is a test from Cyrex labs that identifies gluten mimics. I had several that came out positive for me, and when I cut them out of my diet I got better quick.

  14. Samantha says:

    I was diagnosed late 2013 , at first I cut out everything But fresh, whole foods, and since then I’ve had family members splurge on GF products. They’ve definitely made my life easier, but now Ive still experiencing problems. Its so hard to find the time to prepare everything :( But I feel now I have to cut back again on packaged goods.

    I tried the BettyCrocker Cupcake Mix during the super bowl weekend too.. I must have ate at least 20. I had a reaction, but I think it was just from eating too many cupcakes and not from my CD.

    Either way I need to cut down on Baking :( Cookies are one of my daily staples lol

  15. Jennifer says:

    My medication isn’t negotiable. What is the point of checking when i need them any way? I feel i have no choice and on another note, no money! Sigh. . Thanks

  16. Leda Van Stedum says:

    Linda,
    Thank you for the work you are doing. Thirty years ago, when I was diagnosed, information was nil, I felt so alone! I felt like a freak!

    Please forgive me changing the subject a little but this really offended me and I think all celiacs and wheat free people should know about this.

    I have had Celiac Disease for over 30 years now. Around Christmas time, I was browsing through a mail catalog and it had a plaque Item #VP5111 which read:

    “Non-fat? High-fiber? Gluten-free?
    Go chew on a stick.”

    I find this very offensive and emailed them. They did nothing. I emailed all the Celiac organizations I could find. I just checked to see if they were still carrying this item and they are. If you feel offended by this, please email them@ thewirelesscatalog.com

    Thank you,
    Leda

  17. Mehwish says:

    Hi I am Mehwish I am 28 years old and I am married woman having two children . After my second delivery I am suffering from celiac disease I know about my disease before 6 month so I tried my best to take gluten free diet but after reading ur article about it I want to share my views after 6 month precaution I didn’t feel good there is some trouble in my stomach & it ache very badly I take processed gluten free food in this 1 month & take chocolate I want to know that there is gluten present in chocolate

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