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My Experience With The Disease, And How It Changed Me.

emilio

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emilio Newbie
emilio
Posted

Well first of all, i found this board probably around the time i was diagnosed. I lurked around for a few months, up until i did something i completely regret. And now about two years later im back on here. I took a huge turn on my life, and ive been gluten free for about id say a month and a half? It was hard for me. Even harder than it was when i was eating gluten. I was diagnosed with the disease when i was 14, it was a very low point in my life. I dont really want to get into how it all started, but i was depressed. very. I had just graduated from middle school going onto high school that summer. It mad was mid 2009. Ive had a break up, few family things going on, and one of my favorite idols pass away. By august, i had dropped to about 80-90 pounds. I felt weak most of the time, dizzy mostly. I remember i didnt really have my realization that something was wrong with me when i took off my shirt so i could shower to leave to the hospital that day. I could see my rib cage, i could see the top of my spine, and my stomach felt pressed in. I just remember tearing up. Fast forward a few months i had started to eat normally. instead of small snacks, i grew onto larger foods.

But all of this turned the wrong way, i completely ignored the disease for a good two years. There was times when i told my self i was going to stop. I had stayed away from a certain foods. I tried not to over do it but i still ate things like pizza, burgers, (ect.) cause i couldn't help it. I saw it everywhere and something told me to eat it. I did feel bad, there was times when the thought "You're killing your self." came onto me. "You're putting your life at risk." echoed. Something odd about my self is that i did not have sever allergic reactions like most of the people on here. The only reactions i had was rashes on my abdominal area and my arms. Every here and then i could feel that i was being glutened. I could feel the food not wanting to go down, its a feeling i cant explain but it felt like it WAS there in a uncomfortable way. I guess this is what kind of made me keep going. This went on until eventually it came back and striked at me. I had started to get acne on my chest, im curious to know if this happened to anyone else. I do know that there is different reactions. But it started slowly and it was something i didnt think was going to take over me. It spread over time on my chest. It killed me to even look at my self and know that i cant be seen with these. I felt like there was now more being taken away from me. From there on more realization came onto me on why i should stop.

It IS difficult. But i tell my self that this is what makes me learn life. No one is going to live life without struggles. I've had my times when the disease gets the best of me. I've had my times when i grab something only to read the words WHEAT on the labels and feel my eyes water up. But i feel this is only the beginning. And i have all of you guys of this community to be with. I think you guys are amazing, i see some people have been gluten free for nearly a century and im just like, wow. I look up to them. I really dont want to write so much, but i hope theres people out there who have been in the same situation. All of you are practically now my family, because of this website i will now try to expand the way i eat and think. I hope to find everything i need to not let my self down on life. Because i know everyone on here can help me. Theres a lot more i have to say, but i feel like i should stop here. Before i end this i just want to say sorry to all of you guys, i feel like i betrayed/disrespected everyone who has this problem. I can say that i will put a stop at this, i honestly dont want the worst in my life. Im looking forward to this board. Thank you for reading.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Welcome Home!

And I mean that!

This has been a place where I learned about a disease that has been eating my body up for 48 years.

You haven't disrespected anyone here. Nor yourself.Sometimes we have to figure things out the hard way. It's not too late. Never too late. Goodness knows I would like to change a lot of the last years I was constantly Gluten-Sick, but didn't even know what gluten was! You will be just fine. The biggest thing is for you to make the decision, and a strong decision to love yourself and to be good to your body. You just did that. So congratulations and Welcome Home!

No one is perfect at this. A lot of us have ongoing physical problems from years of gluten ingestion when we did not know what was killing us slowly. You do need to be careful and to stay the course on being gluten free. I just don't want you to get discouraged with yourself for the time you were not gluten free. I often say to myself..."If only I had known gluten was the problem." or "My son could have had a better childhood if only I had figured it out." BUT you cannot go back! AND I cannot go back. It is what it is. Once you start feeling better by living gluten free you will see that the cravings for gluten will subside. Gluten has a way of effecting your brain and making you want more of it. It is the ENEMY...don't even listen to that voice. It is like an opiate and it makes you want more of it...without regard to the consequesnces. Be prepared for a period of detoxing...and be sure you have some support for the hard times. Come here and read and ask questions. Many people are available to help. Most of all, just be grateful for your realization and go forward thinking to do the next right thing. It will be a stuggle but it is one you can do. You can do this and your body will thank you by aging backwards. That is the fun part...you watch your body heal. As for the acne...yes it can definitely be related. You could have Dermatitis Herpetiformis..the Skin Form of Celiac. Or...you could have acne caused by gluten intolerance. Read the forum here on DH...and you can also Google Acne and Gluten...you see a lot of stories where people had acne that completely cleared up on going gluten free. Gluten causes Neurological, Dermatological, and Gastrointestinal symptoms...so yes, you can look forward to many things being better as you enter your gluten free life!

You did a brave thing by telling your story. That is amazing.You will get a lot of responses from people, but I bet you don't get one single response where anyone felt disrespected because it took you some time to realize that this disease is serious for you. We all had to come to that realization ourselves too. One last thought...is my quote. "It becomes no man to nurse despair, but in the teeth of clenched antagonisms, to follow up the worthiest until he dies." I often thought of that all my years of being sick and unable to function. And you must think of something that keeps you going too. Anyway, I'm happy for the choice and decision you made and just wanted to welcome you home. Ya got a family here. :)

allceliacs Newbie
allceliacs
Posted

Emilio - you are NOT alone! And yes, Celiacs - we are our OWN family - we are the only ones who truly understand each other - thus we need to be here to help each other through the tough times. Non Celiacs - no matter how hard they try - cannot truly understand. I myself am like eatmeat4good - 40 years undiagnosed and a vast array of other health health issues due to celiac disease. And your story - sounds alot like my 20 yr old celiac disease daughter. Found out at 18 she was. Try taking the pizza and burger out of an 18 yr old girls hand. I dare you. It's like giving a cat a bath. Do NOT look down on yourself, don't ever beat yourself up. Every day you wake up, it is a new day, a new beginning. My daughter will still cheat once and awhile, as she doesn't get sick. Myself - as soon as I went gluten-free - I cannot even think of eating foods with Gluten or I'm the drastic other way - I will get violently ill. Aggravated all the time. I am now lactose intolerant and cannot handle several other gluten-free foods. Trust me, I've cried, screamed, you name it. But, I have learned - it is NOT my fault, I cannot change my fate. But what I can do, is control my future. There are many of us out there - just many don't know they are "one of us" yet. They'll learn, hopefully sooner than later. And, you're still young. Luckily there are now many things on the market to fill the voids. Thank God for Betty Crocker and Bisquick! You can still get your junk food fill. :) The longer you stick to the diet, the easier it gets. 8 months in - I have this down to a science. And although missing some things - when I think about the damage those foods do to me, I no longer care for them.

Hold strong, don't beat yourself up. And know, you just in fact gained a whole new family. :)

StephanieL Enthusiast
StephanieL
Posted

So if I am reading correctly, you are 16 now? I want to say you are amazing and I give you so much credit for everything you have been through. I hope when my son (who is only 4 and the one who has Celiac here) is your age, he will be as strong, knowledgable and well spoken on the disease as you.

The struggles you have been though sound like they have made you an amazingly strong person. It is hard and I hope that it gets easier for you as time goes on!

Rebecca92 Apprentice
Rebecca92
Posted

You are definitely not alone I was diagnosed about a year ago at 18yrs old after going to the doctor for having stomach problems every morning (and throughout the day some days) I haven't had a morning that my stomach didn't hurt since I was about 12-13. I had been to previous doctors who told me i had acid reflux and gave me a prescription that of course didn't help. I tried to tell my mom that the pills didn't help but she thought I just wanted to stay home from school. Then finally I went to a new doctor about my problem and she did a blood test, which I had a seizure in the middle of them drawing blood due to low blood sugar, and they told me that I had tested positive for celiac disease. I got off of the phone and just started crying. How can I give up my favorite foods? I basically lived off of gluten foods. So I decided I would just try to 'cut down' on my gluten intake. Of course the pains never went away and I tried my hardest to ignore the fact I knew I was hurting myself. Then one day I stumbled upon this site and read some of the coping with posts. Again I started crying like a baby, so many people had the same symptoms I had everything from joint pain, to stomach cramps, migranes, extreme fatigue. and they stopped eating gluten and felt better. Thats when I decided I don't want to be tired all the time anymore, I just want to feel better. Reading some of the posts on this site is what inspired me to go gluten free. I've only been gluten free for about a week and a half. I still feel tortured by the smell of the pizza place right next door to my work, everybody still forgets and asks me if i want anything from fast food places. Everytime someone asks me I want to cry. Although I miss gluten badly I know that this is what I have to do to get better.

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