Sunday, November 23, 2014
This week, I emailed the NFCA people to see what I could do to help, they sent me back saying they would send me brochures to put in health/grocery stores, doctors offices and even at school. As the disease is becoming more prevalent in our everyday lives, more and more people are becoming aware, however we have too much faith in doctors diagnosing it. Based on my experiences, if there is not a medication for the disease or health problem, then it does not exist. Doctors follow a text book of sorts, if it is not in the textbook, then its not real and it must be the patient is too stressed. Ever since the beginning of October, I have been sick, in and out of school, home more than I'm at school. Most doctors I saw said they were stress triggered migraines. The problem was I'm not stressed out and it was much more than a headache. The doctors were not listening to all my symptoms. I have been getting migraines for about six months, but they were always just a major headache and foggy thinking. Since October, I have had stomach problems, headaches, constant extreme dizziness and almost an out of body state off and on. My mom knows from when I was diagnosed with Celiac that you have to fight the doctors to get you tested for things. When I first had signs of Celiac disease, the doctors said there was no way I had Celiac, that I did not have enough symptoms for it. My mom, already knowing about the disease from my brother, told my doctor to "humor her" and get me tested. The doctor finally agreed and I was tested and it came back positive, if my mom had not fought, I might still not be diagnosed correctly to this day. It is hard because doctors should be the most trusted people, you put your lives in their hands, and don't get me wrong, I'm so thankful for them, but sometimes they really don't know and their go to "diagnosis" is stress. I think the problem is that doctors know what they know and they do not work together to solve these "medical mysteries". They say to go talk to someone, they will help, and you believe them. When in reality there are many diseases like Celiac, where the symptoms are vague and you don't have all the symptoms. Many people with Celiac are incorrectly diagnosed with irritable bowel for years. People with irritable bowel are told there symptoms are the result of stress. Celiac Disease is a real disease with no medications to help. A lifelong gluten free diet is the only thing that will help.
Sunday, November 16, 2014
This week I used my time to do a little more research on Celiac Disease. I found out that approximately 83 percent of Americans who have Celiac are undiagnosed or misdiagnosed. This one fact blows my mind; the average person who has Celiac waits 6-10 years to be correctly diagnosed. When, if you go to the right doctor, could only take a month. Most doctors know what Celiac is, they just do not correctly diagnosis it. The Celiac blood test is the first step, however you would have had to eat a lot of gluten a week prior to preforming the test for it to be accurate. After getting more background information, I started thinking of ways I could help bring awareness to our community. While I was researching, I came across the NFCA which is the National Foundation for Celiac Awareness. I plan to email them this week to see what I could do in our community to help raise awareness for the disease. I feel this is a good place to start to get ideas on what to do to help everyone who is struggling with undiagnosed Celiac.
Sunday, November 9, 2014
When I first heard about the 20 time project, I had no idea what I wanted to do, but as I started thinking about things I feel passionate about, one idea popped in my head. It was Celiac Disease, an autoimmune disease where gluten starts to break down or destroy your small intestine and your villi, causing all sorts of digestion issues and increased risks of intestinal cancers. The only cure is a life long gluten free diet. Once I had my idea, I did not know exactly what my end goal should be, and to be honest, I still have a few kinks to work out. Although there may be some flaws to fix, I just want to bring awareness to the disease. Celiac disease goes undiagnosed in about two and a half million Americans. These two and a half Americans are having digestion problems, mental fog, chronic fatigue, depression, attention difficulites, and anxiety, but many doctors do not know that this is from Celiac. These people are now at risks for many awful diseases for the rest of their lives, like GI cancers, gallbladder malfunctions, pancreatic insufficiency, and it can even cause neurological problems like seizures or dementia. The reason I chose Celiac Disease as my 20 time project is because my four younger siblings, mother, grandfather and I all have it. When my younger brother, who is now 12, was about two years old, he started having digestion problems. He lost a lot of weight and his stomach got bloated. He started to fall behind in development and did not have the energy to move around, and for a two year old boy who could not run around or eat, this was frightening. My parents took him to numerous GI doctors and specialists and no one knew exactly what was wrong. Finally, a doctor suggested we get a scope of his small intestine and other vital systems in the digestive tract. When the results came back, the doctor knew it was Celiac because the villi in his small intestine were completely flattened, which meant he was unable to absorb any nutrients from his food. It was hard for a little boy to have to learn to be so careful about food, no birthday treats, no restaurants, and a small variety of snacks consisting of pretzels and potato chips. In another five years, my sisters, my mother, grandfather, and I had all gotten it as well, but for many people they do not know that Celiac is the cause of their symptoms. My goal is to bring awareness to everyone; to help to get many people who are undiagnosed, diagnosed.