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5 Tips I Wish I Knew When I Was First Diagnosed With Celiac Disease

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I was the second person in my family to be diagnosed with celiac disease, and I thought I was on top of everything. I figured I knew just how to handle it, and it would be no big deal. I was wrong.

I was finally diagnosed after years of “it’s just stress.” I cut out gluten and carried on as usual. Then I got sicker and sicker, then better for a bit, and sicker again. It’s been a roller coaster, but I’ve learned a lot along the way. A lot of mistakes I made could very well have been prevented with a knowledgeable doctor and some outside help.

A few days ago I was reminiscing about the things I did when I was first diagnosed, and it made me wish I had a celiac friend to teach me helpful ways to manage chronic illness. I can only hope to be that friend for you, fellow celiac!

So to stop my ramble, here are five tips I wish I had heard when I was first diagnosed with celiac disease.

1. Focus on real whole food.

Instead of replacing all of your food with gluten-free versions, try to replace your packaged snacks and meals with whole foods. Fruits and vegetables are naturally gluten-free, and they can save your wallet and stomach. An easy meal can be made with a clean source of protein like chicken or fish, cooked veggies and steamed rice. Fruit is an easy snack and it can easily be paired with a gluten-free nut butter to keep you full longer.

Gluten free packaged snacks are usually filled with preservatives and other fillers that can easily irritate your gut just as much as gluten! Your mind and body will thank you for the switch.

2. Season foods yourself.

Spices and seasoning are an easy place for gluten to hide, so be sure to buy things that are unseasoned. Find fresh herbs or specific gluten-free prepared spices to season foods yourself and eliminate the risk of cross-contamination. This is especially important with frozen vegetables, frozen meals, ready made broth and packaged foods.

3. Learn to read food labels.

Food labels are confusing and allergy information can be hard to find. I only trust brands of snacks, baking ingredients and meals that say “gluten-free” on the label. Even with gluten-free labeled food, I check the back of every package for words like “manufactured in a facility with wheat,” or “processed in a facility with gluten containing products.” If anything is listed about cross-contamination, I won’t eat it. Some celiacs find no issue with small amounts of gluten, but I’ve never been that lucky. I also don’t want to further damage my intestines or nerves by consuming gluten, no matter how good or convenient it may be.

4. Don’t give up.

It may take a long time being strictly gluten-free before you start seeing results. For some celiacs, myself included, being gluten-free is not enough to manage symptoms. I saw drastic changes immediately by eliminating gluten, but I still had lots of symptoms that didn’t go away completely. I had to experiment with eliminating other gut-irritants from my lifestyle and diet before I found complete relief from some things.

5. Connect with other spoonies.

Though not many people talk about it, especially doctors, celiac disease really is a chronic illness. Even with all of the lifestyle changes, we will still experience flares and other autoimmune symptoms and conditions. Many of us have to live with the lasting damages that gluten has caused to our bodies.

It is so important to have a support group full of people who understand what you are going through. There are many celiac specific support groups on Facebook, or you could join another spoonie community online.

I really hope these tips will help you, encourage you and support you in your newly diagnosed journey. Having celiac disease is no fun, but it is not a death sentence. You will find new foods that you love, and your belly will be forever grateful. You will learn to cook, become a food label expert and make lots of new friends online. You will have ups and downs, but there will be people supporting you through it all. I’m cheering for you, friend!

A version of this story originally appeared on

Photo credit: djedzura/Getty Images

Originally published: March 10, 2019
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