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!

4 comments:

  1. Wish you the best of luck at the Mayo clinic. We have our fingers crossed!

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  2. Hey Em,
    Keep fighting and don't give up! You are doing some awesome research and work for the people who need bigger voices. Don't stop shining like the bright light you are! ⭐️
    Miss you,
    -Rachael

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  3. We are all missing you back at GPS! I hope everything will go upwards from here, we hope to see you soon!

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  4. We miss you so much Emma!!!! Your research is awesome and I cant wait to read more! I wish you the best of luck at the clinic! Stay strong!
    -Katie

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