Wednesday, May 13, 2015

When I heard we had to do a reflection on our blog, I knew that I would say I failed, but after thinking it over I realized I'm actually proud of my work. Although I didn't accomplish what I wanted to do at the beginning of the year, I realized things changed. I'm proud of the work I've done. If you told me that back in September that this is what I would have gotten done I would have been so disappointed in myself, but after everything I've been through I'm proud of my blog. I was able to inform people of celiac disease, and even though I never got to go to school to pass the flyers or organize a team for the celiac walk, I did my blog every week. At this point in my life that is the biggest accomplishment all year.

As you all know I have been home bound since December with some unidentifiable illness affecting my nervous system. How fitting that I chose celiac disease, before knowing that I would be going through exactly what people trying to get diagnosed with celiac would be going through. I think I was able to truly understand what people who have celiac have to go through. Countless doctors all telling them that's it's all in their head. I now know how that feels, it's awful, in case you were wondering. Luckily, I have three doctors on my team now that know there is a physical problem. While we still do not know what exactly is happening to me, we do know that I have to live day to day and make the very most of each good moment. 

Writing this blog post took five days for me, due to my brain issues and fatigue, but I did it. That in itself is a huge accomplishment for me. Over the course of this year I have learned the difference between failure and success. For me success is being able to make my own breakfast or get out of bed in the morning. It's being able to sit at the table and enjoy a family dinner. My blog is an example of a success I have achieved this year. Before this year however I would have called anything that didn't turn out the way I had planned as a failure. I have learned that success is in the moment. Success is defined by how you do things in each moment. Did you do your best in that moment, given what you know and what you are capable of achieving moment to moment? If you can answer, yes, you have succeeded. After going through this, I realized that the fact I was able to write my blog post and research more about celiac, that in itself, is a success in my book. Now of course I was late on a few blog posts, and I'm not proud of that. I should have started writing a few days earlier is all that would go through my mind when it was Sunday and I hadn't finished it yet. I would change that. I know that the road ahead of me is a hard one, but I also know that I will learn to succeed in my own way. I am a fighter. People dealing with chronic invisible diseases are fighters. They just happen to be fighting something no one can see. It can be a hard, lonely journey, but it can also make you stronger. I just find it so ironic that I set out to bring awareness to an invisible illness that I have and ended fighting another one in the process.

"Failure will never overtake me if my determination to succeed is strong enough" -Og Mandido

Tuesday, April 21, 2015

This week my doctor told me a story he read about a neurologist that had a mother and a son come in for migraines. The patient happened to mention that he had awful canker sores and the mother said that she did too. The neurologist said he read about celiac disease and canker sores, so he tested them for the celiac antibody, and sure enough they had celiac disease. A couple months after going gluten free the migraines and the canker sores went away. Celiac has so many weird and obscure symptoms, so if you think you have celiac make sure you tell your doctor every little symptom you have. If that family had not mentioned the canker sores, the son would have been put on a migraine medication and the celiac may have never been found until it was possibly too late.  I know for me personally in my experiences with dealing with doctors, I don't want to complain about things I think are little. For example, I have had this weird sweet taste in my mouth that will not go away. I did not want to complain about what seemed to be a little thing. Now after doing some research I have learned that that can be a sign of a neurological disorder. Like the migraine patient, I have much more worrisome symptoms to remember to tell the doctor, but this weird one might hold a key to helping our neurologist solve this mystery. We need to not be afraid to tell the doctors everything because the one thing we hold back, could be the thing that will help a doctor figure out the problem. I know how hard it is to want to let the doctor know what is going on, but also not sound like hypochondriac. If you might have celiac, do your own research and tell your doctor everything!

Tuesday, March 31, 2015

This week I did some research on the differences between gluten free and gluten containing foods. Many people are going gluten free as the latest fad diet. The March 2015 Self magazine featured an article on the gluten free craze. For the people that are sensitive to gluten, have celiac, or are on a gluten free diet for autoimmune conditions gluten free is necessary. For the rest of the population gluten free is not the best option for weight loss or for your health. It typically has more sugar, carbs, and fats. In addition, it is not fortified with nutrients that we need. Many breads, pastas, cereals, and even junk food are fortified with B vitamins, iron, magnesium, and calcium. These are necessary nutrients to our diets. These vitamins and minerals are found to be deficient in people on a gluten free diet. Many studies have shown that people with Celiac and others on gluten free diets need to take supplements. The problem with undiagnosed Celiac is the damage has already occurred to the small intestine and makes absorption of these vital nutrients impossible until healing has occurred. People that think they have celiac should an tested before going on a gluten free diet.

Monday, March 9, 2015

Since this is my first blog post for the month of March, which is autoimmune awareness month, I decided to mention all autoimmune diseases and how they are all so easily misdiagnosed and still unknown to many doctors. Celiac is one of the easier ones, not that it isn't awful, but the damage heals on just a gluten free diet, no steroids or IVIG necessary. However many autoimmune diseases are far worse, some can leave you in a wheelchair, unable to do things you used to be able to, or doubled over in pain in your joints. The only thing that you can do in some of those is delay the progress of the disease or hope it goes into remission and doesn't come back. I have a friend who has to go to the hospital for a week for IVIG once every month to slow down the disease. Whereas with celiac a gluten free diet will put the disease into remission and keep it there, just as long as you stay gluten free. However, celiac is one of the most misdiagnosed ones out there. Once you have your diagnosis, celiac is easy to deal with, it's getting there that's the hard part. Most people who have celiac wait 10 years until getting their diagnosis, and the symptoms can be vague and vary from person to person. In some ways, it's harder than other autoimmune diseases, just based on how hard it is to get your diagnosis. Eighty three percent of people who have celiac disease, don't know it. They are walking around thinking they have an anxiety disorder or irritable bowel. This disease is so easily treatable, if more people were aware of the disease, less people would have to suffer for 10 years they don't have to. 

Monday, February 23, 2015

So much has happened this week. As you all know I went to Mayo Clinic in Rochester, Minnesota. It was such a great experience! All the doctors wanted to take the time to listen and solve the mystery. They loved questions and learning new things. Every single one of them reassured me that there was something truly wrong, and it was not in my head. As you all know I was hoping to go get a definitive diagnosis, and while I didn't quite get that I did get an answer. They determined that I have my own disease, that has not been discovered. The research is still very new, the doctor did tell me this is autoimmune related. The doctor also told me that she wanted me to be a part of research studies to help them figure out what it is I have. The cardiologist that we saw called it "The Emma". We still have several tests that we need results for, so we are still waiting for more info. They assured me that they will monitor me closely and if they see any red flags  they will treat me with the necessary treatment, for example steroids and IVIG. After we get all the results in my doctor will call us and give us the medication part of the treatment plan. It was nice to hear the doctors say it was beyond just autonomic dysfunction, because it was worrying me that some of my symptoms didn't fit in, they however reassured me that although there is something else at play, it's not dangerous. It may be tricky to treat, but no harm will come from it. While I was there listening to the doctors, I just kept thinking about how celiac was first described in the 2nd century, but it wasn't until 1952 that a Dutch pediatrician named Willem Karel Dicke linked the disease with gluten. It took centuries to figure out just that simple way to stop it in its tracks. The treatment from then on is stop eating gluten, no side effects, no risks. People everywhere feel as sick as I do, but they have an easy fix, stop eating gluten. They will start feeling better, and the disease goes into remission. I just think about all those people who can be healing the damage, and feeling all better in no time, if it were me I'd want to know. And as far as I go, who knows maybe the medical community will discover my unknown disease, and the treatment will end up being as simple as not eating this particular food.

Wednesday, February 11, 2015

I have been looking into research being done on Celiac Disease. While researching, I found that the University of Chicago has a Celiac research center dedicated to celiac awareness. They are currently researching non responsive Celiac disease, which is interesting personally because my gastroenterologist wants to perform an endoscopy on me for this very reason. It has been so strange because I started this blog before all my health problems existed. Now, I keeping having doctors bring up the Celiac as a possible cause of my autonomic dysfunction. My pediatrician back in October actually said, " too bad you already have Celiac because this sounds so much like celiac." I had always just been told that as long as I ate a completely gluten free diet, I would never have to worry about having Celiac Disease. I was told of all the autoimmune diseases out there, Celiac is a pretty good one to have, if you had to pick one.  I was told to just be vigilant with my diet, and I would never have to worry about Celiac.  There are no medications or surgeries needed with Celiac. I'm on the gluten free diet, so I can't be having a celiac response. However, we have found doctors who are now finding that there is such a thing as non responsive celiac and they think it could be a potential cause of autonomic dysfunction. Non responsive celiac is where the gluten free diet stops working as a treatment, and the celiac symptoms comes back. This causes the same symptoms as just normal celiac does, only the recovery is harder. There are many treatments that they try, for example IVIG. I find it so interesting that I picked this blog to help people get the diagnosis they so desperately want and need when dealing with an unknown illness, and now I have spent the last 5 months dealing with that very desire. I am off to Mayo clinic next week, the place where people go for hope, in hopes of finding the reason behind my autonomic failure and more importantly, a treatment plan to give me my life back. Fingers crossed that I get answers!

Sunday, January 25, 2015

I found this article that mentioned a book called "Misdiagnosed" written by and about Jody Berger's search for her medical problem, which ended up being gluten sensitivity.  It took her 2 years and at least 12 different doctors to figure out her diagnosis.  Originally, she went to the doctor because of tingling in her hands and feet, an ignored symptom of gluten intolerance and Celiac Disease.  The doctors told her she had many different autoimmune diseases, but she knew it wasn't adding up.  After 2 years she eventually got her diagnosis.  It seemed like forever to her, but most people wait and search for 10 years or more! In ten years, a lot of damage to the body can be done! Most people are told that they have other diseases and go through multiple treatments that could potentially cause more harm, considering they may not even have these diseases.  Many doctors nowadays want to treat the symptoms rather than finding the root problem and going from there.  In many cases, like Celiac, the only thing that will help will be a lifelong gluten free diet.  If doctors give people with Celiac medications for each of their symptoms, all it is doing is masking a problem that could be potentially life threatening.  But many doctors don't give you the time of day until permanent damage is done or it becomes so bad it is life threatening.  Why not figure out the problem before it gets too bad.

Wednesday, January 14, 2015

 This week I did more research on Dr. Fasano at Mass General. Dr. Fasano started at the Center for Celiac Research at University of Maryland.  While researching a vaccine for Cholera, he discovered a toxin, zonulin.  He found that the zonulin plays a role in the  pathogenesis of a number of autoimmune diseases, including celiac disease, type 1 diabetes, and certain cancers and diseases of the nervous system. He is now the director at Mass General's Celiac Research Center. Finding a cause of this disease is a priority for the Center of Celiac Research. Fasano says as many as 1 in 133 people have this disease. Grosse Pointe South has 1,673 students, so approximately 12 students have Celiac, just in our school. I then found out that there is a nationwide walk/run to raise money and awareness for Celiac and Celiac research. For this walk you can form your own teams and gather people to support the Celiac research. I plan to try to form a team for the event. Although I can't do the walk/run due to my current health conditions, I hope to get enough people to for a team. This walk takes place in various cities around the U.S. The Tri County Celiac Support Group is putting on a walk at the Ford House here in Grosse Pointe, on Sunday May 17, 2015 at 8:00am. The link for all the walks held around the country and ways to donate money for the Celiac research is below. Next week, I plan to make a webpage on the walk site for my team.
www.celiacwalk.org