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!