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November 4, 2013

How To Accept The Celiac Struggles At Any Age



Over the last couple of years I've been living with my rare adrenal disorder, and over the last couple months I've been living with POTS as well. Since getting diagnosed my life has changed dramatically. I am still unable to do the many things I wish I could do normally, still unable to socialize the way I wish I could, and sill unable to eat many more things I wish I could as well. But out of all the things I'm unable to do, being a voice and advocating for my disorder and Celiac Disease is the one thing I can do. Accepting you have celiac disease is hard for anyone to do at any age! We all go through times of struggle and sometimes we just have to accept it for what it is.


I'll admit there have been many times where I've struggled to see the light at the end of the tunnel when dealing with my disorders. I would sometimes think there is no end to this road and I'll never get better. A lot of the times it may seem like through what I write that I'm a super positive guy and that I never get negative about even the worst situations. Although I am pretty positive about most things, to say that would be crazy! I am human, I do have those days where I think, "Why me?" I do wish sometimes that I was normal. But the fact is that it's ok to have those thoughts. It might even be true to say that it's healthy! One of the things I will say is that it's much worse to lie to yourself and tell yourself that you're happy with having Celiac or any other disorder then to realize that you're not normal and accept it for what it is. That's something I've learned early on..probably a lot earlier than most people.


How I coped at first:
Everyone deals with getting diagnosed with Celiac Disease in their own way. Some people think they can never eat food again and mourn gluten. Some people get angry about it and choose not to accept it. Then some people just learn to accept it for what it is and take it head on. For me I was definitely the 3rd choice. I honestly can't say that I was really upset or devastated after getting diagnosed like most teens would be. I actually took the gluten-free diet on as a challenge and as something for me to constantly push myself to get better at. I'll admit, going gluten-free at age 13 was not easy as a teenager but I did learn to cope with it in my own way. I personally decided to learn how to bake and cook gluten-free which is something I ended up loving. Researching and just becoming interested in Celiac Disease in general was also something I learned to love too! I really was just fascinated with everything about it and I knew the more I learned the better I could get. I've never really found eating gluten-free to be that big of an issue. Obviously eating out away from home is the hardest but other than that I have enjoyed eating gluten-free and how it makes me feel unlike some people. Not everyone can have that mindset though. I only had bread for around 10 years...some of you may have had bread your whole life which can make it a lot harder.

Dealing with low points:
For me the only time I really get negative or upset about being gluten-free is when I actually get glutened. I can't stand getting sick from cross contamination even though I am doing every little thing right! You can only go so far to keep yourself safe from gluten, but this is definitely the thing I hate most while being gluten-free. When I am at my low points though from eating gluten, there are some things that I always try and think about.

  • I tell myself that tomorrow is another day to always get better while being gluten-free. If you get better at it, you will feel better too!
  • I know each day is only as hard as you make it on yourself. If you react to being gluten-free in a negative way, you are only going to have a negative day.
  • I always think that there are far worse things I could be dealing with, but I can treat my disease with something as simple as my diet!
  • I think of all the foods I can still eat that are gluten-free and be happy that I at least don't have to give up those.
  • I realize that being gluten-free is not easy to deal with but that's why we have family, friends, or the gluten-free community to help make it easier.

Accepting living gluten-free:


Now I could easily give you a whole spiel about why you should just accept being gluten-free and make it sound MUCH easier than it is, but I know that's not going to do you any good. The fact is having to worry about cross contamination when you eat out does suck. Not having food when you're at an event or your over at someone's house isn't fair. Having to check every single label on everything you buy is not fun either. But the fact is with Celiac Disease we don't have a choice. It's either avoid gluten and be safe or suffer the consequences which we all know.

Being gluten-free is not easy and it's very reasonable to realize and accept that. The thing is if we spend our time mourning the food we can't have any more and get upset each day about it, how do you ever expect to be happy with the food you are eating in the first place? Honestly it does just take time to move on and realize there are a lot of foods out there we can eat. It just all comes in time and I'll admit it took about 2 years to finally get the hang of it. Everyone is different and like Celiac and the Beast says, my celiac isn't your celiac. We all deal with it differently and it's important that we find a way to deal with it in our own way.


My advice to help:
There is a lot of advice I could give as a teenager to make it easier on you. If you are really missing a certain food that is not gluten-free, try and find a gluten-free version of it to treat yourself too! It makes those hard times when you miss gluten a lot better. I would also really recommend looking for sites online to help cope. I always try my best to be a positive influence and I always try to inspire others as a teenager to make living gluten-free easier. My biggest goal is to help you and that's the whole reason I created my blog! If you have a question, need someone to talk to, or just need some advice, I'm always here to help. Also just having someone to talk to and relate to about these things can make a world of difference. I luckily have my mom and girlfriend who are both gluten-free and make life a lot easier. It's a little harder to find someone who may be gluten-free as well but if you can I know it will help. Even connecting with someone online through the gluten-free community can help you feel not alone. Don't try and take gluten-free living on your own, it's a lot harder that way and you will only make it harder on yourself.


Final thoughts:
Out of all the advice I can give I would probably say this. Try and think positively about the situation you are in! There are many more things you could be dealing with but the fact is you can treat illness with your diet. Eating gluten-free is hard...but because of it you can finally feel healthy and get back to feeling normal again. Sure you can get upset every once in a while about it because it truly is hard to deal with! But sometimes dealing with being gluten-free or with other illnesses is only as hard as you make it on yourself. If you choose to be upset all the time and get discouraged about your situation, you'll never be happy. But if you choose to accept your situation and make the most of what you have, then you can find a way to be happy no matter what the situation is. I'm not saying it's an easy thing to do. Trust me it's easier said than done. But it is something we can all try and something I do throughout my day to day life. I don't live a normal life, I can't go to school, I can't play sports, but I always choose to have a positive outlook on the days ahead because I know my illnesses won't control my future...I will. A positive mindset and the right support is all you need to get through living gluten-free. Get support from someone you can relate to, know that eating gluten-free is not the end of the world. But most of all never cheat. If you do those things then I promise it will get easier in time and the struggles will fade as well. Don't let Celiac Disease control your life. Control your own life and make the most of what you have each day because that's all that really matters in the end.

10 comments:

Tracy said...

Well Thank You for this post. Do you know how many people you have touched with your blog? You've made a difference, you have helped so many. I look forward to all your post. My daughter is 14 (GF) and reads your blog now. She can relate and enjoys reading it. We've got so many great ideas, recipes, advice. I'd never heard of tummy drops before and the help her soo much now! So, cheers to you! Job well done! Thank you.

Taylor Miller said...

That means so much to me to hear! It means a lot to know I've been helpful to both you and your daughter in more than just 1 way. I'm glad she can relate to what I write and I'm glad she got some help from the Tummy Drops as well. Thanks for commenting and sharing with me! :)

Jacqueline said...

Thanks so much for this post! I have been reading your blog for a few months now since I had to go gluten free and I have loads of other health issues going on which overwhelm me. Thanks for your help staying positive!

Laura Miller said...

This is such a great post Taylor. You should be so proud of yourself and you are so right ... attitude is everything. Sharing your view, story and experience is going to help so many people understand that they are not alone and that they can take control of their life even though it may seem so out of control with Celiac. You are an amazing inspiration and I am so proud of you.

Kindsey Haynes said...

You are such an inspiration. I am 15 years old from Arkansas, and I am allergic to gluten and many other foods. I have been completely gluten free for a year, and will be getting scoped soon to see if I have Celiac. It is so hard to live my everyday life, when it comes to going out with friends, and parties. Thanks for giving everyone a glimpse of what our lives are like. Stay positive. (:

Taylor Miller said...

Thanks, Kindsey! It is hard a lot of the times with other people not understanding in high school or really anywhere. Hopefully your scope finds more and sees if you have celiac or not! If you ever want to talk more you can email me or message me on my Facebook page sometime. Thanks for the comment! :)

Anonymous said...

Any advice for me. My daughter she 7 years old is gluten free we just found out. Kinda having problems switching over because she don't like it so I try a different brand. Please feel free to email me it's the best way to reach me. jennyandmile4eva@gmail.com my name is Jenny.

Leah said...

GREAT article! I've found that attitude really is everything -- in gluten-free life and life in general. When I find myself getting down about celiac (which you're right -- is totally okay, normal, and even healthy!) I just remind myself of how sick I was before my diagnosis, and that even on the toughest days, it sure beats the heck out of all of the other days pre-diagnosis!

Taylor Miller said...

Very true! It's ok to have down days but like you said, it's important to remember how bad you felt before you got diagnosed and know that you can feel better now. Thanks for commenting, Leah, and I'm glad you liked my article!

Marsey Taylor said...

Thank you Taylor! I fall in the 1st and 3rd catagories u talked about. I accepted what i had to do but i still mourn gluten. I adored beead and pasta and eating out w friends. I actually started to hate the disease and everyone who didnt have it. I hated the food industry for screwing us all up & restaurants for not taking care of us. I still hope things change at restaurants & come on medicine to help us. (Yes i know some people dont want meds but im ok w it.) But i am starting to be ok just not eating at a friends house or just getting a drink when everyone else is enjoying their food. (I used to love salads.....please no more salads!) Thanks for reminding me that its ok to be sad but dont unpack & live there. We still have to take care of ourselves. It could be worse.

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