In honor of National Allergy Awareness week, I've decided to share my story with Celiac with you. I stole this from my other blog... So I guess it's not stealing... ;)
For those of you who don't know, Celiac disease is an intolerance to gluten. NOT just an allergy, an INTOLERANCE. Gluten is a protein found in wheat, barley, and rye.
So.. in turn, a gluten intolerance means that my digestive system can't absorb the protein so it ends up damaging and scaring the lining of my intestines. It is an autoimmune disease which in turns makes my ability to fight off infection a lot harder.
Here is my story:
The end of my junior year in high school I started getting really sick. I was dancing about every morning from 6-9, and every night from 5-9. Meaning I needed to up my caloric intake so my body could keep up. It was then, I started to feel like everything I ate made me sick. I started taking naps every time I could and going to bed sooner and sooner. It seemed like I couldn't get enough sleep and I never had energy.
During the week before a dance concert we spent almost every waking hour on stage practicing which meant lots of time on my knees, rolling on the ground and throwing my body every which way. One night I got home and realized my shins were killing! I rolled up my pants and found HUGE red bumps. They looked like someone had taken a crow bar to my legs. You know when you get a good ache? I had 5-6 of those PER LEG. The slightest movement hurt. Even my pant legs rubbing against them hurt. That week, I felt like crying every time I did a dance.
I went to the doctor later that month to see what was wrong. The doctor came up with what seemed like a hundred different diagnoses (diagnosies..?) khrons, thyroid problems, cancer, anemia, and so on and so forth. Countless blood tests proved nothing, except that after your 20th poke in the same vein, you tend to not feel it so much.
My doctor decided to schedule me for a colonoscopy (aka, a camera shoved up your who-ha). The results of the test showed that I had what was called Collagenous Colitis. Here's the doctor's words when he read my me results "Are you sure you're 18? Because your intestines belong in an 80 year old's body."
Um... how do you respond to that. I laughed and said, ya.... He went on to explain that Collagenous Colitis is typical of the elderly because your intestines are so scared, they don't absorb the nutrients your body needs. With that diagnosis we were one step closer to finding out what the root of the problem was, but we were still in the dark.
Constant stomach aches and 18+ hours of sleep a day was definitely taking it's toll on me. I was in my freshman year of college as a dance major and found myself feeling even more tired CONSTANTLY. I would nap in between classes, after class, and my bed time was now 7 pm due to the lack of energy.
I started losing weight rapidly, along with my hair. In the shower, I would run my hand through my hair and pull out hand fulls. I don't know how many times I clogged the shower drain in a week, but my hair was constantly falling out. Within about a month or so, I realized that the once blue carpet I had on my floor was now a brown color. I vacuumed it to find that hair was COVERING my floor. I had to cut the hair out of the vacuum 4 times before I was done because my hair kept clogging it.
Being a girl and losing your hair in handfuls is not an easy thing. You're hair is your identity. I again went to my dermatologist (who I'm pretty close to now because of all the skin problems caused by celiac) who diagnosed me with Alopecia Areota. I had lost all the hair around my ears, and it was now starting to fall out on the top of my head.
So.. in turn, a gluten intolerance means that my digestive system can't absorb the protein so it ends up damaging and scaring the lining of my intestines. It is an autoimmune disease which in turns makes my ability to fight off infection a lot harder.
Here is my story:
The end of my junior year in high school I started getting really sick. I was dancing about every morning from 6-9, and every night from 5-9. Meaning I needed to up my caloric intake so my body could keep up. It was then, I started to feel like everything I ate made me sick. I started taking naps every time I could and going to bed sooner and sooner. It seemed like I couldn't get enough sleep and I never had energy.
During the week before a dance concert we spent almost every waking hour on stage practicing which meant lots of time on my knees, rolling on the ground and throwing my body every which way. One night I got home and realized my shins were killing! I rolled up my pants and found HUGE red bumps. They looked like someone had taken a crow bar to my legs. You know when you get a good ache? I had 5-6 of those PER LEG. The slightest movement hurt. Even my pant legs rubbing against them hurt. That week, I felt like crying every time I did a dance.
I went to the doctor later that month to see what was wrong. The doctor came up with what seemed like a hundred different diagnoses (diagnosies..?) khrons, thyroid problems, cancer, anemia, and so on and so forth. Countless blood tests proved nothing, except that after your 20th poke in the same vein, you tend to not feel it so much.
My doctor decided to schedule me for a colonoscopy (aka, a camera shoved up your who-ha). The results of the test showed that I had what was called Collagenous Colitis. Here's the doctor's words when he read my me results "Are you sure you're 18? Because your intestines belong in an 80 year old's body."
Um... how do you respond to that. I laughed and said, ya.... He went on to explain that Collagenous Colitis is typical of the elderly because your intestines are so scared, they don't absorb the nutrients your body needs. With that diagnosis we were one step closer to finding out what the root of the problem was, but we were still in the dark.
Constant stomach aches and 18+ hours of sleep a day was definitely taking it's toll on me. I was in my freshman year of college as a dance major and found myself feeling even more tired CONSTANTLY. I would nap in between classes, after class, and my bed time was now 7 pm due to the lack of energy.
I started losing weight rapidly, along with my hair. In the shower, I would run my hand through my hair and pull out hand fulls. I don't know how many times I clogged the shower drain in a week, but my hair was constantly falling out. Within about a month or so, I realized that the once blue carpet I had on my floor was now a brown color. I vacuumed it to find that hair was COVERING my floor. I had to cut the hair out of the vacuum 4 times before I was done because my hair kept clogging it.
Being a girl and losing your hair in handfuls is not an easy thing. You're hair is your identity. I again went to my dermatologist (who I'm pretty close to now because of all the skin problems caused by celiac) who diagnosed me with Alopecia Areota. I had lost all the hair around my ears, and it was now starting to fall out on the top of my head.
In the last picture, you can see red spots. Those are where I had a steroid/cortisone cocktail injected into my scalp. Every time I would have my 'cocktail', I would get 2cc's of it which may not seem like a lot, but it led to 50-60 stabs with a needle into my scalp which is super tender, causing a headache that would take me out the rest of the day.
Patches of hair started to slowly grow back, but my hair got to the point where I had a 'Y' of hair. If you looked at the top of my head from an aerial view, you would see what looked like a Y. I decided to cut it which turned out to almost be a buzz cut. As I arrived home from the salon, I broke down to my mom telling her I looked like a boy. It may seem silly that hair can have such an effect on someone, but you don't realize it till it's gone.
Finally, after no direction from my doctors, only treatment of SYMPTOMS, not the root problem, my mom researched and researched and researched. I had been testes for Celiac disease numerous times through blood tests, but all came back negative. I also had biopsies done during my colonoscopy but still, negative. (blood tests never work I've found out, and only the effected parts of your intestines will show a positive result. This was 3 years ago so hopefully testing has advanced!) As my mom and I talked and researched, Celiac disease kept coming up so I decided that I'll try to go on a gluten free diet for a couple weeks because it never hurts to try.
Within a week, I had energy like I never knew I could have. My color came back and I no longer looked anemic. Plus, I didn't have to sleep 18 hours a day! I could go a whole day without taking a nap, which was HUGE. My body didn't ache or hurt anymore.
We immediately went back to my doctor with the good news. He explained that if I had let my symptoms progress as quickly as they had been, cancer would have been the next one. SCARY.
The last 3 years haven't been easy and I'll admit, I've caved into temptation because you don't realize that gluten is in EVERYTHING until you can't eat it anymore. If I did cave though, I was instantly reminded why I don't eat gluten. I get bloated, tired, SUPER agitated and angry.
My hair still falls out in certain areas sometimes, but it grows back so I'm not complaining. :)
I would love to be able to help those who are struggling with this disease which can lead to infertility, alzheimers's, and even cancer.
Patches of hair started to slowly grow back, but my hair got to the point where I had a 'Y' of hair. If you looked at the top of my head from an aerial view, you would see what looked like a Y. I decided to cut it which turned out to almost be a buzz cut. As I arrived home from the salon, I broke down to my mom telling her I looked like a boy. It may seem silly that hair can have such an effect on someone, but you don't realize it till it's gone.
Finally, after no direction from my doctors, only treatment of SYMPTOMS, not the root problem, my mom researched and researched and researched. I had been testes for Celiac disease numerous times through blood tests, but all came back negative. I also had biopsies done during my colonoscopy but still, negative. (blood tests never work I've found out, and only the effected parts of your intestines will show a positive result. This was 3 years ago so hopefully testing has advanced!) As my mom and I talked and researched, Celiac disease kept coming up so I decided that I'll try to go on a gluten free diet for a couple weeks because it never hurts to try.
Within a week, I had energy like I never knew I could have. My color came back and I no longer looked anemic. Plus, I didn't have to sleep 18 hours a day! I could go a whole day without taking a nap, which was HUGE. My body didn't ache or hurt anymore.
We immediately went back to my doctor with the good news. He explained that if I had let my symptoms progress as quickly as they had been, cancer would have been the next one. SCARY.
The last 3 years haven't been easy and I'll admit, I've caved into temptation because you don't realize that gluten is in EVERYTHING until you can't eat it anymore. If I did cave though, I was instantly reminded why I don't eat gluten. I get bloated, tired, SUPER agitated and angry.
My hair still falls out in certain areas sometimes, but it grows back so I'm not complaining. :)
I would love to be able to help those who are struggling with this disease which can lead to infertility, alzheimers's, and even cancer.
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