What Life is Like After a Celiac Disease Diagnosis

I was diagnosed with celiac disease in 2015.

It's an autoimmune disorder in which gluten, such as the ones contained in wheat, inflame and damage your small intestines. After months of constant boating, unexplained rashes, frequent headaches and extreme fatigue, I finally had an answer regarding the cause. I was relieved at first because there was a clear path to health. I wouldn't feel like my stomach was digesting glass or experience bloating so painful that it hurt to touch my skin. It would be easy, right? I had no clue how complicated my life was about to become and how this would always be a struggle in my life.

I wish I had someone explain how my life would change, but many people think celiac disease is just another excuse for a trendy diet. In the hopes to dispel that myth and give some guidance to people who have celiac disease, here's a look into what life is like with it.

You Prioritize Your Health

You'll face unique challenges after being diagnosed with celiac disease. Celiac disease causes damage to your small intestines, which means you are now at risk for malnutrition. Damaged intestines cannot absorb vitamins and minerals as well as healthy intestines. Therefore, you must prioritize vitamins and minerals and make sure you are getting enough from your food or supplements. You might need to take a blood test after diagnosis to ensure you are not deficient in any area. There are also consequences in the future if you do not take your celiac disease seriously. You may think, "I'll feel bad for a day, but it'll be worth it if I get to eat this slice of pizza," but the harm is not only immediate; it is also long-lasting. Continuous exposure to gluten can have severe consequences like intestinal cancer. Of course, occasional exposure to gluten will not immediately cause drastic effects, but it is something to keep in mind if you are often straying from your gluten-free diet.

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You Become Used to Being Judged

Gluten-free diets have also become a fad diet in the wellness world. People who have no reason to eliminate gluten from their diets have now adopted this way of eating because it's trendy or they think it's "healthy." To be clear, you do not need to eliminate gluten from your diet unless it's medically necessary. Due to this trend, people think a gluten-free diet isn't a necessity. You might face judgment at restaurants while asking how your food is prepared. Friends may be offended if you don't eat the foods they made for you. It's frustrating and even isolating because people don't understand how severe celiac disease is. They think it is as something like a juice cleanse and not an actual medical condition, such as a peanut allergy. Unfortunately, there is no way to stop this judgment. However, you can educate the people in your life so you don't receive critiques from the people closest to you. Sometimes strangers understand after you explain the condition. Many restaurants go above-and-beyond to accommodate my dietary needs, but this is not the case for every person or restaurant. Always be prepared to advocate for yourself.

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You Live for Gluten-Free Alternatives

The one upside of the gluten-free trend becoming so popular is that there are so many incredible gluten-free alternatives now. You can find gluten-free options for literally any item. Excellent brands like Enjoy Life, Simple Mills, Trader Joe's and Amy's create delicious gluten-free options for all your favorite products that typically contain gluten. Many gluten-free foods even taste better than the gluten version. There is also an abundance of gluten-free baking ingredients and substitutions so you can bake all your favorite treats. Eating out has become much easier as well. Most restaurants now offer gluten-free meals or substitution. There are even restaurants and bakeries that are entirely gluten-free, which is amazing!

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You Constantly Worry About Cross-Contact

Gluten cross-contact is when gluten-free food comes in contact with a source of gluten. This can happen in two ways; directly from the gluten food or indirectly, like sharing cooking utensils. Celiac disease, like most diseases, has different levels of severity. Gluten cross-contact will affect people differently depending on how sensitive they are to gluten. My celiac disease is very severe. I have a gluten-free dedicated section in my kitchen with my own toaster, cooking utensils, pots and pans. I have to disinfect my phone if someone else holds it after eating wheat. I can't even share toothpaste with anyone. I also know that I will almost always get sick when eating at a restaurant unless there is a dedicated gluten-free kitchen. As much as I try to stress to the employees that I have celiac disease, there's only so much they can do to prevent cross-contact. I hope your celiac disease is not this severe, but if it is, know that you can take steps to create a safe environment. It always helps when you have people on your side that want to keep you healthy.

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You Need Support

Celiac disease caused a lot more stress and isolation than I could predict, which is why it's so important to have supportive people in your life. I am lucky to have incredibly supportive family and friends. My family goes the extra mile in making sure there is no cross-contamination in our home. They try my gluten-free food and let me cook gluten-free meals for them. My friends will disinfect their entire kitchen before cooking for me. They're so sympathetic if I have to reschedule plans because I've had a gluten attack. I don't think I would be as okay as I am now if I did not have such a supportive group of people in my life. If your friends and family are not immediately supportive, that's okay because many people don't understand celiac disease. You can send them resources, which will help educate them on celiac disease. Once they know, they will be supportive because they want you to be safe and healthy. Plus, once they try the Enjoy Life cookies, they'll be asking for gluten-free snacks. Trust me.

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Did you know that many plant-based alternatives are also gluten-free? Check out the vegan replacements for all your favorite dairy products and look out for the gluten-free ones!