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LilyCeliac

Catching Up. Some Advice And My Thoughts.

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Hey Everyone!

I was diagnosed this summer and now that I have had a few months to adjust to the new lifestyle I am realizing alot about this disease and also alot about myself.

I am still feeling sick but I have noticed some improvements to my health.

I still have a long way to go and there are so many things that I could be doing better.

For starters I really need to eat more vegetables, fruits, and drink more water. I need to cut down on the junk food and I think this will help alot. For a while I was still eating alot of junky foods that are gluten free to make up for all the foods that I can no longer eat. But, after I am finished eating the junk food I normally don't feel well and regret it. Sure I wont cut yummy junk foods out 100% but for a while I'm gonna try really hard to cut back ALOT!.

Also, I always feel alot better whenever I am working out. Alot of times I feel too weak and tired to work out but even if i can fit in a half hour a day it makes a huge difference, my joint pain disappears and I feel more awake. I finally feel like I have enough energy to start going to a gym again so I'm excited to get started on that.

I'm so sick of this disease interfering with my life and I'm finally ready to do everything possible to get better. I'm sick of always wanting to stay home out of fear of getting sick or having to run to the bathroom. I don't want this disease to hold me back.

I have finally found a bread that I enjoy after trying a few different kinds that were DISGUSTING!. I was missing Pizza alot and I finally found a pizza crust that actually tastes normal!. I recently baked my first Gluten Free cake which was delicious! Noone even knew it was gluten free! It's can definitly be a fun learning process.

I find that people are always interested about the disease and have alot of questions about it and I am always happy to discuss it with them and educate them on the disease. I think the more people we educate the BETTER! This disease does not get enough recognition. This is one of those diseases where more awareness would help ALOT! If people who work in restaurants, the food industry, and in customer service knew more about this disease we wouldn't have to worry about accidentally eating something that really isn't gluten free. We wouldn't have to be so paranoid all the time. I get so frustrated at how little people know about this disease! I didn't even know it existed before I was diagnosed. Even Doctors can't provide us with the information and piece of mind we need.

I just wanted to write this and get out some of my thoughts and express how much I feel for all of you with this disease going through the same things that I am going through.... Alot of times when I feel let down by my Doctor and frustrated with people who don't understand I think about all of you on this forum and I don't feel so alone anymore. I know that I'm not alone. When I was first diagnosed at times I was a complete mess about it all and relied alot on reading everyones posts. This is where I gained most of the valuable knowledge I have learned about Celiac Disease, from people who have it and who have been through it too. So if theres anyone out there that has just been diagnosed or is having a moment of weakness (which we all do sometimes), I hope you know that your not alone, and things will get better.

Anything that holds you back in life is always so hard to deal with and thats what this disease can do. It can hold you back from doing things you want to do and going places that you want to go. Which is why we need to be smart and we need to open our eyes. We need to be doing everything we possibly can to make ourselves better because it is possible. With a positive attitude anything is possible. It may not happen right away but you are on the right path if you face the reality of this all.

I myself really need to get serious about this disease. The last couple months have been the learning process and now I am ready for the Acting Process.

Wish me luck! haha

Love you all!

xoxoxo

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Thank you Lily. I think your letter is very inspiring, especially for newbies. I hope they read it. It says it all. :D


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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