Things They Never Told You About Going Gluten-Free with Celiac Disease Reading Labels
When You Are Diagnosed with Celiac Disease, You Are Often Left on Your Own
If you are like me, your celiac diagnosis came with very little guidance. You may have been handed a sheet of paper that said something like:
Eat gluten free food
Focus on fruits, vegetables, rice, potatoes, and meat
No one explained how complicated gluten free living can actually be. No one talked about labels, cross contact, or hidden gluten. You are sent off on a treasure hunt with a really bad map.
Naturally Gluten Free vs Labeled Gluten Free
Gluten-free foods fall into 2 categories, those are naturally gluten-free and those that are labled gluten-free.
Naturally Gluten Free Foods
These are foods that are gluten free in their purest state and have not been processed.
Examples include:
Fresh fruits and vegetables
Plain rice and potatoes
Unseasoned meat that has not been injected, marinated, or processed
These foods are usually the easiest and safest place to start, but they do require more preparation and processing which can be somewhat overwhelming if you are just getting started with the gluten free diet, especially if you are not used to cooking from scratch.
Gluten Free Labeled Foods
Packaged foods tend to be more comfortable because they are convenient, but once foods are processed, things get more complicated. This is why learning to read labels is the most important skill you can learn when you are first digagnosed.
In the United States, gluten is not labeled as a required allergen. That means you will not always see a clear warning that says “contains gluten.” There is legislation pending in congress to change that for food and medicine, but right now, the labeling laws are a bit challenging.
When a product says gluten free, it means:
It contains less than 20 parts per million of gluten
It does not include gluten containing ingredients
Manufacturers are expected to test for this, but enforcement is limited. You are relying on the manufacturer to follow the rules.
What Does Certified Gluten Free Mean?
Certified gluten free products go a step further. These products are tested by a third party organization that verifies gluten levels. Depending on the certification, products may be tested to below 20 parts per million or even lower. Certified gluten free labeling provides an added layer of confidence, especially for people with celiac disease.
Often when you are just starting out on the gluten-free diet, these are the easiest foods to buy, but you are not limited to these foods. Learning how to read labels helps you learn when foods are safe.
Why You Still Have to Read the Ingredient on the Label
Even with gluten free labeling, reading ingredients is critical. According to reporting from Gluten Free Watchdog, gluten free labeling laws are not always strongly enforced. That means you need to know what to look for yourself.
Ingredients That Always Contain Gluten
Some ingredients always contain gluten and are never safe for someone with celiac disease. If you see these on a label, the product is not gluten free.
These include:
Wheat
Rye
Barley
Triticale
Spelt
Durum
Emmer
Farina
Farro
Graham
Kamut (Khorasan wheat)
Einkorn wheat
Couscous
Malt and malt derivatives, including malt extract, malt syrup, malt flavoring, and malt vinegar
Brewer’s yeast
These ingredients are all sources of gluten and should be avoided completely.
Ingredients That Require Extra Investigation
Some ingredients may or may not contain gluten depending on how they are sourced and processed. These ingredients require closer attention, especially if the product is not certified gluten free.
These include:
Natural flavors
Modified food starch
Caramel coloring
Yeast extract
Dextrin
Rice syrup
Wheat starch
Smoke flavor
Starch or modified food starch
Blue cheese (types 1, 2, 3, and 4)
Oats
If a product contains these ingredients, you need to look for one of the following:
Clear gluten free labeling
Certified gluten free labeling
Confirmation from the manufacturer about the source on the package or on the website. You may need to call or write the manufacturer to ask as well.
If the product is certified gluten free (see above for the labels), it has been tested and is considered safe for someone with celiac disease.
Oats Deserve Special Attention
Oats are one of the biggest sources of confusion for people with celiac disease.
Unless a product clearly states gluten free oats, regular oats are not safe. Oats are often grown and processed alongside wheat, which leads to significant cross contact.
For celiac disease:
Oats must say gluten-free oats in the ingredients statement. I look for purity protocol oats to be extra safe.
Or be certified gluten-free by a third party
If a product contains oats and does not clearly meet these standards, it is best to avoid it.
Tools That Can Help You Shop Safely
If you are new to gluten free living, tools can make label reading easier.
Using the Fig App
Apps like Fig (Food is Good App) allow you to scan barcodes and flag ingredients that may be unsafe. This can be very helpful when you are learning. However, apps should never replace reading the label yourself. Ingredients change, and labels change. Always confirm what is in front of you.
Research Before You Shop
Looking up ingredients online before going to the store can save time and reduce stress. Many product ingredient lists are available on manufacturer websites. Once in the store, always double check the label to make sure it matches what you researched. Check out my handy shopping lists for Amazon,Walmart, Costco, or Sprouts.
How a Gluten Detection Dog Fits In
If you are like me, you may also use a gluten detection dog as an extra layer of safety. A gluten detection or celiac service dog does not replace label reading. I still read labels and check ingredients. My dog does not make food safer.
What she does is alert me if gluten is present. That gives me confidence and allows me to eat foods I might otherwise avoid, especially products with oats or higher cross contact risk.
You Are Not Alone in This
Going gluten free is not just about food. Learning how to read labels will let you expand the foods you eat and give you confidence to ask questions about ingredients and processing. It doesn't happen overnight, and it does make grocery shopping take longer, but it gets easier the more you practice. Take your time, ask questions, your health is worth the effort. If you want help reading labels, download my free Hidden Gluten Cheatsheet to make reading labels a bit easier.
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