How Big of a Problem is Accidental Gluten Exposure?
Many individuals follow a gluten-free diet for various reasons. An individual could have a celiac diagnosis, wheat allergy, gluten sensitivity, leaky gut, or even IBD, such as Crohn’s or Colitis. Many of the diets for various disease states take gluten off the menu, such as Specific Carbohydrate or Paleo. Why someone has to follow one of these diets or chooses to is a personal story.
For this blog post I am going to focus on celiac disease with gluten exposure, not because others without celiac disease aren’t bothered by it, but with celiac disease a blood test can be run or another biopsy performed to see if someone is getting gluten. Sometimes an individual can be very sensitive to even a tiny amount of gluten exposure, and others do not even know they have had gluten.
The University of Chicago Celiac Disease Center recommends those with celiac disease receive follow-up testing on a yearly basis, with a blood draw to check their tTG and DGP.
Three million people in the United States have celiac disease. In a February 2018 study in the American Journal of Clinical Nutrition, they looked at gluten exposure detected by two tests. One was using urine and the other stool. These tests can detect the gluten peptides that make it through the digestive tract intact.
Just to give a reference range, the average woman (without avoiding gluten), consumes as high as 7,500mg gluten per day. The average man consumes 10,000mg gluten per day. For someone with celiac disease, the recommended limit for gluten consumption is no more than 10mg per day. That is a HUGE difference! If someone with celiac disease has more than 10mg of gluten on an ongoing basis, they can start to have symptoms and intestinal damage.
The study from the American Journal of Clinical Nutrition found that even though the participants were consuming a gluten-free diet, they were getting 244mg per day of gluten (by stool analysis), and 363mg per day (by urine analysis). That is a lot more than the 10mg recommended. These are individuals following a gluten-free diet! What is happening?
If someone is following a gluten-free diet, but they are still having symptoms, or their labs/biopsy indicate repeated exposure, where is it coming from? Here are some ideas!
1. The first place it can start is in the fields.
Cross-contamination can occur from one crop to another. Gluten-free crops may sit next to gluten containing crops. There is space between them, but the wind can carry. An animal passing by can easily cause cross-contamination, such as deer or a bird flying overhead.
Gluten-free crops may be rotated with gluten containing crops.
2. Processing, Packaging and Shipping.
If a train car carries gluten-free flour, it needs to be certain that same train car didn’t carry a gluten containing grain on another ride. Or, it was thoroughly cleaned.
Even though a food item is labeled gluten-free, is it made in a dedicated gluten-free facility? There are many foods labeled gluten-free that are not made in a dedicated gluten-free facility, and that is OK to eat this food, if you are not having symptoms, and repeat lab work/biopsy shows you aren’t getting gluten.
The recommendation is to purchase certified gluten-free flour and oats, as they are at a higher risk of cross-contamination. If you are newly diagnosed, the recommendation is no oats for 6-12 months (depending on severity of biopsy), and after that no more than a ½ cup of dry oats/day as tolerated.
3. Medications (OTC/Prescription)
Many over-the-counter (OTC) medications are labeling gluten-free.
Prescription medications have fillers, so be sure to ask the pharmacist if it is gluten-free. If they don’t know, make sure to call the Pharmaceutical Company. With a celiac diagnosis, it is a good idea to have the pharmacist flag your name, so they know.
4. If there are still family members that eat gluten in your home, this is a way to get exposure.
These are recommendations to decrease exposure in the kitchen.
You will want to have a separate toaster and strainer.
Purchase new sponges-may want separate sponges
Purchase new cutting boards-preferably non-porous and color code if there are individuals that eat gluten in the house.
Replace wooden utensils with something non-porous, such as metal.
Purchase new measuring cups and spoons if they have cracks. Gluten can get trapped. Assess if you need two sets.
Replace appliances that have easy places for gluten to hide, such as a bread maker, waffle iron, and pancake griddle.
Replace pots and pans that have scratches/crevices that could hide gluten, such as non-stick.
Replace bakeware and mixing bowls that hide gluten.
Flour becomes airborne and can settle. If you are going to have regular flour in the house, make sure cookware, utensils, etc. are stored upside down.
Always keep your sinks and countertops clean!
Use squeeze condiments or have separate ones labeled gluten-free.
Store gluten-free food above gluten containing food.
5. Restaurants are an easy place to get gluten exposure.
6. There are varying opinions on toiletries and if they should be gluten-free, but here are a few things to think about.
Lipstick, lip gloss or lip balm. They are on your lips, so can easily get in your mouth. Use a brand that is labeled gluten-free.
Lotion. If lotion is on your hands and you eat something, there is potential there. It is best to get a lotion that is labeled gluten-free.
Shampoo/Conditioner. Some would say that it is not a big deal, but these are running down your face, past your mouth. We are not eating it, but there is a chance that it could get in your mouth. Repeated exposure could add up.
Make-up. Anything near your mouth should be labeled gluten-free. Some are very sensitive, so if this is the case, make sure all make-up is gluten-free. This is a personal decision. You can ask the company or if it is a direct sales company, ask the consultant to see which products are gluten-free.
Sunscreen. If it is near your mouth, you will want to find one that is gluten-free.
Some would argue that the skin is the biggest organ in the body and it absorbs everything. So, it is a personal decision what you use, but be aware if your celiac antibody levels are still elevated, you are continuing to have symptoms or a follow-up biopsy reveals continued inflammation/damage, it could be something other than food.
This blog is intended for you to be aware of the many places gluten can be found, not to make you feel that you can’t eat or use anything! Some are very sensitive to gluten exposure, while others do fine just buying gluten-free food items.
Syage, J.A, Kelly, C.P, Dickason, M.A, Ramirez, A.C, Leon, F, Dominguez, R, Sealey-Voyksner, J.A. (2018). Determination of gluten consumption in celiac disease patients on a gluten-free diet. American Journal of Clinical Nutrition, Volume 107, Issue 2, Pages 201-207.
The information in this blog is not a substitute for professional medical advice, examination, diagnosis and treatment. Always seek the advice of your physician or other qualified healthcare provider before altering your diet, starting a new treatment or making changes to an existing treatment.
Registered Dietitian Nutritionist - CDN, RDN
My name is Valerie Polley. I am a Indianapolis-based registered dietitian and owner of Blue Tree Nutrition. I consult with clients both local and far away.
I have a bachelor’s degree in nutrition from Purdue University and I have been practicing for 20 years.
I thoroughly enjoy helping clients through their gut health journey. I see a range of GI issues including, but not limited to celiac disease, IBS and SIBO. I also specialize in the FODMAP elimination diet.
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