Happy Celiac Birthday to Me: 5 Years STRONGER

Wow...I can't believe it has been five years already since I was diagnosed with Celiac Disease. As a way to celebrate making it five years gluten free, I decided I should share a special tribute to it and what I have learned about myself since my diagnosis. To say it has been life changing would be an understatement! I was talking with my Mom today and we discussed how less of a picky eater I actually am since I became gluten free. Odd, because usually Celiacs are classified by society as "picky." Like my favorite Youtube Video about Celiac Disease says, "I have no preferences" anymore.  I decided to declare the day I was diagnosed as my birthday because I never felt like I was truly living until after my diagnosis, which I am going to fully explain later. Honestly, some days it is hard to believe how far I have came since my doctor shared the news. Even though not everyday as a Celiac is rainbows and butterflies, it sure beats the days before my diagnosis. 

When I look back at my life before it was gluten free all I remember is the various forms of pain. Physical, mental, and emotional pain everyday and night. I honestly had no idea how much I was hurting until the symptoms finally went away. Like I told my mom shortly after changing my diet, I felt awake for the first time. For me it was not the physical symptoms that hurt the most, but more of the mental and emotional symptoms. Most of my life all I remember was feeling anxiety and sadness on a daily basis and not knowing why. One moment I felt happy, the next I wanted to throw a chair, and then shortly after I would want to just ball up and cry. With Celiac Disease both my anxiety and sadness was on a whole different level during my teenage years and it only got worse in college. I remember telling my mom I felt CRAZY and that I was CRAWLING OUT OF MY SKIN. I was a Psychology major and had no idea why my emotions were all over the place. Within weeks after changing my diet I felt like a dark cloud that had loomed over me my entire life cleared, and I felt awake because I finally could see the bright light which was LIFE. This reason and euphoric feeling is why I say I did not start living until my diagnosis. 

Has the transition been easy..... absolutely not! I miss the freedom and carefree life that I used to have. I miss partaking in celebrations, traveling without a worry about what I would do for food, and not being a hinderance to my family and friends. However, something like Celiac Disease shows you who your true friends are. Actually it is through my disease that I finally found the strength to decide the type of people I want in my life and how I want people to treat me. Most of my life I would classify myself as a "doormat." I would let people stomp and run over me on a daily basis. Use and abuse me and not say anything. With my disease I have had to learn to speak up for myself and to advocate for my needs. If I don't I could get sick and will be in miserable pain for days. By learning to speak up for myself, and knowing what I want and deserve, my diagnosis has actually given me more self-confidence than I ever had before. It sounds strange, and the change was certainly not overnight, but being diagnosed with a chronic illness gave me a certain admiration within and for myself. I could have easily not listened or taken the doctor's seriously. I could "cheat" on the diet and inflict pain on myself, but I don't. Taking care of myself and choosing to remain strong everyday within the diet is giving myself and body the love and respect it deserves. After all, it was neglected unknowingly for 20 years! 

Looking towards the future I worry about what is left to come and the unknown parts of life with this disease in it. Something that crosses my mind probably the most is will I ever find someone who loves this part of me? Who would sacrifice his food/drink choices to keep me safe? Who would advocate for me because I have days when I just don't want to anymore. I mean dating is complicating enough so might as well add something like Celiac Disease on top of it to make it near impossible right, haha. I think about if I ever do have children, would I feed them a gluten free diet to keep myself safe, or will I raise them on gluten filled products? I think what if they have this disease and are ostracized and made fun of because their body does not know how to process a protein that is so common in food? I think about how mad that would make me as a parent! Children and students are treated horribly in the education system due to food allergies. Both K-12 and Higher Education need to work on this! These are just a few things that cross my mind on a semi daily basis, and it certainly is not the only things.

On my one year mark of being diagnosed with Celiac Disease I got a tattoo in the middle of my upper back. It is the Celiac Awareness Ribbon, the word Stronger, and the date I was diagnosed (10-18-11). I actually did a poll with people who helped, supported, and prayed for me during the months when my health problems was unknown, and I was getting tested for things left and right. They all agreed that the word STRONGER was the best choice. For me I did not really know what this word meant to me and my diagnosis until after the fact. For me it means that I was stronger because I survived my life before it was gluten free. I survived the pain and darkness for twenty years! My disease made me stronger because it helped me learn to live and lean on faith. My diagnosis made me stronger, because it made me develop grit to overcome my illness during a semester of enormous change in college. My disease made me stronger because it showed me that "no" I wasn't a basket case all those years growing up but, I was truly sick. I can now identify what I am truly feeling and why, which doesn't sound like much of an accomplishment but for me it was a life changing. My disease made me stronger because it helped me learn to vocalize and stand up for myself. Finally, my disease made me stronger because I feel like it truly gave my life purpose and meaning. It has given me opportunities I would have never had otherwise, like appearing on News 13 and getting a published article nationally with NACA Campus Activities Programming. 

Life throws you curve balls you never expect. We can't always control them but you CAN control how you respond to them! I am proud of myself for responding to my disease with great stride and strength. Everyday I challenge myself to live and be stronger in all aspects of my life, because I can and this disease has shown me that. I hope that by sharing my story you too will take what life throws your way and do something good with it. You never know what you will learn from it, yourself, or who you will inspire along the way. 

Until next time,

- Jodie

The Dark Side of Celiac Disease

Wow.....Celiac Awareness Month is halfway over and I have not posted at all!

One reason is because life was very eventful the first week of May, but another is because I have been uninspired to write and to raise awareness for some reason.

The truth is that it gets hard to constantly fight this fight. Sometimes I just get really tired of thinking about the challenges we Celiac's face in society. How we have to defend our DISEASE and still do not get the respect we deserve. I get tired of constantly having to think and plan every meal/snack of my life. To constantly advocate for myself at events because people do not think of dietary restrictions. To constantly say no and feel the stares and the shade people send my way. To be in a room of people and feel all alone because I can't take part in the celebration. A lot of people will read that and say, "but you can take part in the celebration without eating the food." You are right I can take part in the celebration, but do you realize how left out I feel? How I feel isolated and like an outcast. How I feel angry, sad, and disappointed that nobody considered me and my dietary needs? A lot of people will think I am snobby or high maintenance for thinking and feeling this way. They will have remarks saying "the world cannot revolve around you", "it is not possible to please everyone", and my favorite is "they didn't know".

The truth is you never fully understand until you are on the other side of the table. You never really get it until you live this life.

I have always prided myself in looking at the positive sides of this disease. Not only did my diagnosis make me feel better but it changed my life COMPLETELY. Even outside of the health arena! It has helped me meet people and accomplish things I never would have otherwise. However, there is the dark and depressing side of having this disease, and I feel really any autoimmune disease.

This dark side of the disease leads you to being an emotional hot mess half the time. When you can not eat the food provided to you. When you debate about eating the gluten containing food just to feel normal again for five minutes. Then six minutes later regretting it for weeks! When you are always remembered as that one annoying customer or person. When people misjudge you as a person because you have a demanding dining request to help control a disease.  How incredibly alone you feel at social gatherings. The emotional roller coaster goes on...and on.....and on. The kicker is that sometimes the emotional roller coaster does not hit you as hard as others. One day you will be fine with the lack of inclusion, and the next day you will be blazing mad about it.

So what can you as a Non-Celiac person do? You can OPEN your mind and eyes to this issue. You can try and see it from our side. You may not fully understand it, but you can at least empathize with it. You can advocate for the inclusion for not just Celiacs but ALL who suffer from Food Allergies at events that involve food. You can make it a point to ask about restrictions instead of waiting to see if someone will tell you about their dietary restriction. BE PROACTIVE!!! Yes it is our responsibility to advocate for our needs, but those that do not suffer from Celiac or a food allergy should do their part in making us feel safe to voice our restrictions. For example, asking about restrictions instead of waiting for the individual to tell you about theirs. When people do not ask about restrictions up front, I automatically do not trust that they will advocate for me fully and I bring food just in case I do not feel safe, or worse they do not provide anything at all. I do not say that to be cynical but it is just how I feel.

 This post is not about getting pitty from people or to offend anybody. It is about showing you the not so positive side of life with Celiac Disease. The depression that can sometimes come when battling an autoimmune disease is real! I was depressed most of high school, partly because of my undiagnosed disease. Now that I have a diagnosis I am certainly not going to let it depress me now, even though some days it is really easy to let it. Instead I try to let my disease fuel my fire and passion for raising awareness. However, I felt it was important and necessary to say that I am human and sometimes I get really tired and fed up with constantly having to advocate for myself. Especially since lately this has been a challenge for me.
I hope to be back sooner rather than later friends. If you have any topics you want me to talk about make sure to submit your thoughts and ideas HERE.

Celiac Awareness Month 2016

When the month of May rolls around most people think of this...

I am a Backstreet Boys over NSync fan so that is why I did not use the typical Justin Timberlake meme haha. 

Even though I love my boy bands, and all the memes I see on Facebook, when May rolls I always think about this....

This year I am celebrating my fifth May as a Celiac. It is hard to believe that five years has already gone by! I was watching my Youtube videos from my first Celiac Awareness month, and it is crazy to see where I was within my diagnosis. Even though I was putting on a brave face during that time I still was trying to accept my life with this disease. Fast forward five years and I feel like I am finally in the "Acceptance" phase of food grief! I figured it would be a cool idea this month to reflect and talk about how I felt going through all of the stages. 

I have a few ideas about what other topics I will discuss this month, but I want to know what YOU want to learn about! So make sure you submit questions via this Google Form. 

Hopefully, life will not get in the way and I will be able to actually post regularly throughout this month. I am not enrolled in school, and not graduating, so I really have no excuse right?!?! 

Look forward to raising awareness with all of you people this month! 

- Jodie