Sunday, December 14, 2014
This week I researched about whether or not there were any fundraisers or ongoing research for Celiac disease. I found that MassGeneral hospital has a research center. Dr. Alessio Fasano is leading research to not only help celiac patients, but find a cure beside the gluten free diet. They are looking for an alternate method other than the lifelong diet. In addition, they are doing research on Celiac in newborn babies who have a mother, father, or sibling with Celiac. They are trying to find ways to try to prevent the onset of Celiac in these babies. While researching this I found out that there is a national walk held all over the United States to raise money for Celiac research. I also learned that Southeast Michigan has its own support group called TCCSG, tri county celiac support group. The TCCSG puts on a Making Tracks Celiac walk every May at the Ford House in Grosse Pointe. I plan to research the walk more next week.
Saturday, December 6, 2014
Well, I guess it just takes finding the right doctor to solve a "medical mystery". This week I went to a cardiologist and three tests later, I had my diagnosis. This doctor listened to all my symptoms and didn't just hear the ones that she had an answer for. She wanted to hear all of them. I felt so heard. This doctor agreed that this was way more complicated than just migraines. As she asked me about various health issues, the puzzle unfolded. She said I have a condition called Dysautonomia. Basically, everything that my body should be doing automatically is being impacted, like my heart rate, blood pressure, concentration, processing, digestion, sleep cycles, temperature control and my ability to stay upright with out fainting. I learned that if you find the right doctor, it only takes an hour to get an answer that took 8 doctors three months to never uncover. This doctor did not even seem surprised by my symptoms, but rather expected them. This is not stress related whatsoever. This is not something I have control over or am causing. It is a problem with my autonomic nervous system, which by nature is automatic. It took me three long months to get my answer. It felt like eternity to me. I can't imagine all the people with undiagnosed Celiac that go on average, 6-10 years to get a diagnosis. More than ever, I want to bring awareness to this hidden disease. I think the most upsetting thing about these "medical mysteries" is that people are often blamed for them. It is either something you are doing or not doing, or a way you are dealing with life or not dealing with it. When in reality, this is as real as someone having diabetes. You would never blame a type I diabetic for their illness. Once you get your Celiac diagnosis, you lose that feeling of blame and shame. You realize all your abdominal, physical and mental suffering has a reason behind it. Most of these Celiac symptoms will resolve themselves by following a life long gluten free diet.