2014 has been a year of new experiences and learning for me. I began the year with a trip to the Emergency Room on January 12th via ambulance with a severe anaphylactic attack of unknown origin. I suppose I should give you a bit more background of what was happening to me leading up to this point.
My name is Margo. I live in the Midwest part of the US. Roughly 25 years ago I was diagnosed as having an autoimmune disease called hypothyroidism. This disease affected many areas of my health and life. Thankfully, there is medication that can regulate my TSH levels and keep my thyroid in check. However, many of my symptoms of hypothyroidism continued through the years even though all of my levels were where they should be.
As time went on, new symptoms appeared. Many were things that I didn't even recognize as symptoms. I will talk about these in a later blog post. Nearly four years ago I developed some newer symptoms that took my mind off of the other symptoms I had. I broke out in hives that covered my entire body. These were not just your run-of-the-mill hives, small, itchy bumps. Nope. These were huge welts! The welts were nickel to quarter sized and often appeared in clusters that were roughly 3 or more inches in diameter. I had these welts in my hairline, the palms of my hands, arms, legs, torso and other, unmentionable places. In fact, the only place I didn't end up with these hives were the soles of my feet. I pretty much had them 24/7 for nearly 3 years! And they ITCHED!!!!!!!!!!!!!!!! Oh, did they itch!!! I would slather on the calamine lotion, pop Benadryl like Tic Tacs and nothing brought relief. My poor skin was so raw from scratching. And, as horrible as this new symptom was, it wasn't anywhere near the worst! At least once a week I was having minor anaphylactic reactions. I say minor because my throat wasn't closing up on these. I would feel a tingling sensation on my eyelids or my lips and shortly thereafter, wherever the tingling was began to swell. Periodically, these minor reactions would turn into major ones and my entire face would swell up and I would lose my voice. It never occurred to me that I was losing my voice because the reaction was causing my throat to close off. None of these reactions ever affected my breathing, however, each time I had one of these more severe reactions they would be progressively worse than all of the previous times.
I saw several different doctors as well as an allergist, but no amount of testing could give us an answer. Even my doctor was getting frustrated at not being able to find out what was wrong with me. This went on for nearly 3 years before my trip to the ER this past January. That anaphylactic reaction was the most severe that I'd ever had. It hit hard and fast! I took three Benadryl at the first tingle I felt in my left eyelid. Within 5 minutes my entire face was swollen and I was having difficulty swallowing. My husband loaded me into the car and took me to Urgent Care. They'd been able to help me before, so we thought they could this time, too. I was able to breathe, so I didn't think I needed the ER. WRONG!!!!! When we got to Urgent Care, they gave me a shot of epinephrine. This should have slowed the reaction down. It didn't. I continued to get worse. They wouldn't release me to my husband's care, but instead called an ambulance, stating that it was unlikely that I would survive the trip to the ER if I didn't go by ambulance. SCARY!!!!!!! The paramedics with the ambulance were awesome! In fact, everyone who helped me that day - I literally owe them my life! In the ambulance on the way to the ER - we were about halfway there when all of a sudden it felt like an enormous weight had been dropped on my chest. I couldn't catch my breath! Panic is the worst thing that you can do in a situation like this, but panic is the first thing you feel! Corey, the paramedic in the back with me, gave me another shot of epinephrine in my iv line. This relieved the pressure on my chest and opened my airway again! At the hospital, I was given a third shot of epinephrine in my iv as well as Benadryl, Prednisone and an anti-nausea medication and something to slow my heart rate, which was going nuts because of all of the other meds in me.
In the meantime, my regular doctor had been contacted by Urgent Care and he began reviewing my entire medical history, not just the previous three years of symptoms. That's when he came to the conclusion that the only thing he hadn't checked me for yet was Celiac Disease. I'd heard of this in my own family, though I didn't realize it was something that is hereditary. I am not the first member of my family to learn that I have this disease. My first thought after diagnosis was sheer relief that we FINALLY had an answer to my problem. Oh boy, did we! I had no idea how many of the health issues that I've had through the years could be attributed to Celiac Disease. I will talk about the symptoms of Celiac Disease in a future post. After getting my diagnosis, my doctor advised me to research Celiac Disease and immediately begin a gluten free diet. I had absolutely NO idea what any of that really meant. I was so thankful to come across a book called, "The Gluten Free Bible" by Jax Peters Lowell. There was a ton of great information in that book that helped to guide me. Then I started researching everything I could find about Celiac and Gluten Free online. Some wonderful blogs and Facebook pages came to my attention and to them I owe a world of gratitude. Without them I would have had a much more difficult time navigating my first year of living gluten free after diagnosis. Some of the pages I got the best information from were Pretty Little Celiac, Celiac Diva, Jennifer's Way Bakery and blog, Gluten Dude and of course, Celiac Foundation and Mayo Clinic. I discovered a wonderful box club called G-Free Foodie that I got a membership with and each month I receive a box full of a variety of gluten free foods and products along with information, recipes, etc. They have been a godsend this year!!!! Along with Jennifer's Way blog and her Facebook page I bought Jennifer Esposito's book, "Jennifer's Way: My Journey With Celiac Disease - What Doctors Don't Tell You and How You Can Learn to Live Again". Even more than the first book I bought immediately after diagnosis, this book has given me so much more information than any other source I've found. It also gave me something else - HOPE. You can learn to live with Celiac Disease. I consider that I am still learning, but considering that in those first few months I was afraid of pretty much all food, not knowing or understanding what was safe to eat, so I was eating very little, I have come so far in this first year. And, I am very happy to report that, at the end of this first year of living with Celiac Disease and being totally gluten free - I am healthier than I have been in more years than I can remember. I know that my body is still healing. After all, I estimate that I was living with undiagnosed Celiac Disease for probably at least 30 years before finally getting the right diagnosis. Celiac Disease is also an autoimmune disease, so that does leave me more vulnerable to illness - having two autoimmune diseases. But, this has been such a change for the positive for me health-wise, physically and mentally. I look forward to sharing more of my story as well as getting information about Celiac Disease and living gluten free in future posts.
