Not 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.
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.
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.
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.
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 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.
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.
Thanks for reminder about medications.. That’s one thing that I initially overlooked.
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.
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!
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
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
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.