10 Things I Wish I Knew When I Was Diagnosed With Celiac Disease

Receiving a diagnosis of any kind is always hard. No matter what it is, life as you know it will change forever. For some, this is only temporary and for others, it is permanent. You never really think about how difficult it can be to completely change your lifestyle, but once you make it past all the bumps in the road, you are on your way to recovery. When I was first diagnosed with celiac disease, I never realized how hard it was going to be. Yeah, I said it. It was hard. I am not going to sit here and sugar coat the fact that the first few months with this disease was absolutely hell.

I am going to go off on a whim here and assume that you came across this list because you or someone you know was recently diagnosed with celiac disease. Or maybe you are just genuinely curious as to what celiac is and why we need to eat gluten-free. Either way, I’m glad you are here. I decided to come up with this list because I feel that my transition to a gluten-free life would have been easier had I known these things.

1. You will miss out on social outings.

This will happen a lot. Sometimes because you are too tired to go out, but most of the time it is because you were not even invited out in the first place. You never really know who your real friends are until you hit a roadblock in life. Your true friends will have your back and support your new dietary needs by doing research with you on restaurants that have gluten-free options and are aware of cross contamination. (A huge thank you to my besties for being so supportive of this, you know who you are!) I have been excluded from outings with my “friends” because they figured I wouldn’t be able to eat anything or I wouldn’t want to go since I am always tired. Newsflash – I can’t eat gluten, but that doesn’t mean I can’t go out and enjoy life like everyone else.

2. Just eating gluten-free isn’t enough.

Gluten hides everywhere. It is in makeup, chapstick, shampoo, toothpaste, soap, lotions, cleaning supplies and even in the air. A gluten-free diet is simply not enough for somebody with celiac disease. Even the tiniest amount of gluten will set off a reaction and send our bodies into ultimate mayhem. I wish I knew this earlier because despite following a strict gluten-free diet for months, I was still feeling crappy. Turns out the BB cream I was using contained wheat flour. Why on earth it did, the world may never know. I have also experienced reactions to breathing in air particles from bakeries and grocery store bread aisles. I am not joking. You will basically need to read the labels on everything in your house and throw away anything containing gluten. Also, don’t go near the bread aisle or into a bakery. (Side note: Not every celiac is sensitive to gluten particles in the air, I did not think I was until I spent a week suffering from being “glutened” after walking down the bread aisle as a shortcut to the front of the store. I’ll never do that again. It is best you just steer clear to avoid any complications.)

3. You will get “glutened” occasionally.

Celiacs will spend the rest of their lives trying to avoid being glutened. As sad as it is, no matter how hard we try, it is bound to happen a few times. I spent the first few months completely clueless as to what cross-contamination was and how it was still making me sick. I felt a little better when I was eating gluten and dairy free, but not 100 percent better, and that was because I was still consuming gluten unknowingly. Be diligent about what you put into your body. If you touch a donut or a piece of bread, do not panic. Just wash your hands thoroughly to avoid the transfer of gluten particles to your face and ultimately into your mouth. I have glutened myself this way, and it is not fun. Obsessing over not getting glutened will ultimately add more stress and anxiety to your life than you need. As long as you are constantly being careful, there is not much more you can do. I know it sucks, but its the truth. We struggle because of an autoimmune disease and we are going to have bad days and weeks because of it. Take each glutened moment as a learning opportunity and reflect on what you could do better next time to try and prevent it from happening. With time, gluten free life gets easier and you will get glutened a lot less often.

4. You will have bad days. Adapt and overcome.

I am very straightforward about everything that I do. Like I said earlier, I am not going to sugar coat anything. Having an autoimmune disease, such as celiac disease, makes it hard to predict how you will feel on a day to day basis because your body is basically working against itself. There are days where you will wake up exhausted with just an all overall feeling of yuck – even if you did not consume or use any gluten filled products. This happens a lot in the first year and will occur less and less as time goes on. Based off of personal experience, this normally happens to me when I am dealing with stress or I overwork myself to the point where I get sick. My best advice for this is to try and listen to your body and learn your limits. You will also learn how to go about your normal day as best as possible while feeling like this, which means that you are pretty much a superhero.

5. People will not take your needs seriously.

It’s a sad world we live in that people make a joke out of the way other people live their lives. The whole reputation surrounding the gluten-free diet has been completely sabotaged and given a bad name by the media and people using it as a “get thin quick” scheme. A public service announcement: Most people eat gluten-free because they have to, not because they choose to. I have encountered a friend of a friend that looked me straight in the eyes and said, “Gluten isn’t even real.” I have had people tell me that one little bite won’t hurt me and that I am overreacting. I have had people straight up tell me to my face that it is “all in my head” and that they do not take my “gluten problem” seriously. Are you kidding me?!

It’s truly infuriating and it makes me sick. Most of these people I do not need in my life anyway and have not spoken to since. You will encounter these types of people (or maybe you already have), but do not let them get to you. It is not your job to deal with their ignorance.

6. Unless its certified gluten free, do not eat it.

This is one of the more important ones. It is a simple mistake many new celiacs make and I cannot really blame them because I made the same mistake too. It’s complicated enough to have to switch your entire life around. I get it. But you need to ensure that you are adapting to the gluten-free lifestyle correctly.

You will find yourself in the grocery store seeing many products with the words “gluten free” plastered all over their packaging. The truth is, is that most of these products actually do in fact contain gluten. The Food and Drug Administration (FDA) states that a gluten limit of less than 20 parts per million (ppm) is considered safe for declaring a product gluten-free. The FDA also states that most people with celiac disease can tolerate foods with very small amounts of gluten. This is somewhat problematic because some celiacs cannot even tolerate one ppm of gluten, while others can handle the 20 ppm.

This is something that is still up for debate as the FDA did not have any gluten-free standards in place until 2013. The difference between “gluten free” and Certified Gluten Free is that in order to get the certified seal on a product, the company that made the product is held to the standards stricter than the FDA by the Gluten-Free Certification Organization. The Celiac Support Association even has their own seal on products, testing manufacturers to the highest degree. These two are the ones that I have seen most often, however, other gluten-free certification agencies do exist.

7. Have snacks on hand at all times, you never know when you may need them.

You will not be able to run to the nearest fast food place to pick up food when you are hungry. Due to an extremely high-risk cross-contamination factor, going out to eat is one of the things that celiacs learn to avoid (for the most part). Because you are human, there will be days you go out and forget to eat before or grab something to bring with you. This is why I always make sure to have safe snacks in my purse, car and at work. It’s also good for when you are out longer than expected and find your tummy rumbling with hunger. You never know when you and your friends may make last minute plans and you may be out in an area with no celiac-safe restaurants. I have found myself in this type of predicament quite a few times in the beginning and let me just say that it wasn’t pretty.

8. Thank your loved ones for helping and supporting you.

Nothing makes me happier than my mom excitedly telling me that she found a new gluten and dairy-free recipe for us to try! Having her support and involvement with my disease is one of the many reasons I am constantly thanking her. Your loved ones are the people in your life who will be there with you through sickness and health. Chances are, you had one or more of them by your side throughout this long journey. While being sick and experiencing the things that we do, we may forget to express our gratitude towards these important people for all that they have done and continue to do for us. They offered you a shoulder to cry on, they accompanied you to doctor’s appointments, they helped you do research on your new condition, and they continually make sacrifices to ensure that you feel comfortable and safe. It takes a lot for them to do these things for you, so make sure you thank them often.

9. Dedicate a special cabinet to all of your gluten-free foods.

Unless you live alone or are in charge of the kitchen, chances are that you will be sharing kitchen space with gluten-filled food. Since cross-contamination happens so easily, it is best to keep all of your food in its own section. In addition to having your own cabinet/section, it is important to have your own pots, pans, bakeware, and food storage containers. Like I have mentioned before, gluten hides everywhere. So as a best practice, keep everything that you use separate and dedicated to gluten-free foods only. And please, do not ever use the same toaster as anybody else. Get your own toaster! I learned all of these things the hard and painful way and I would hate for anybody else to have to do the same.

10. It is going to be OK.

If you get anything out of this list, please let it be this. It is going to be OK. I know it may not feel like that now or even six months from now, but I am telling you that one day you will see that everything is alright. Living with a chronic illness is hard. It is overwhelming, tiring and stressful. But knowing that each day you learn something new about yourself and your illness makes you more knowledgeable, better prepared and will put your mind at ease because you know that you are working on healing yourself and getting your life back. It’s a long journey ahead, but I promise that once you finally acclimate yourself to your new lifestyle, you will realize just how strong you truly are!

Follow this journey on Chronically Gluten Free.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: baibaz