Things They Never Told You About Going Gluten-Free with Celiac Disease

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

And that was it.

No one explained how complicated gluten free living can actually be. No one talked about labels, cross contact, or hidden gluten. That is where most people struggle.

Naturally Gluten Free vs Labeled Gluten Free

Let’s start with the basics.

Naturally Gluten Free Foods

These are foods that are gluten free in their pure 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.

Gluten Free Labeled Foods

Once foods are processed, things get more complicated. This is where labels matter.

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.”

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?

Different Certified Gluten-Free Labels and the maximum level of gluten they allow.

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.

Why You Still Have to Read the Ingredients

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

If the product is certified gluten free, 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.

The Fig App highlights problematic ingredients.

• 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

Suki my Celiac Service Dog detecting gluten in a restaurant.

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. It is about learning skills that no one teaches you at diagnosis. Label reading takes time. Confidence takes practice. And mistakes happen.

If you are early in your gluten free journey, start slow, ask questions, and keep learning. You do not have to know everything right away.