If you are like me when you were diagnosed with Celiac
disease it was a very scary, lonely place to be. I was diagnosed in April 2007
while living in Colorado Springs, CO. I hadn’t really ever heard of Celiac much
less did I know anyone else with the diagnosis. It was completely overwhelming
to walk out of my doctors office with what seemed like the end of a good life
with good food. At the time there weren’t even Facebook groups that I could
turn to for support. I felt like I was drowning in a sea of uncertainty.
I visited a nutritionist that my gastroenterologist recommended and left with less certainty and knowledge than before I went. As I mentioned in my second post she also suggested a pro-biotic and natural Chinese herb that was supposed to aid in my healing and only ended up poisoning me, as it was bound with wheat. I know no one forced me to take the pills, but I also trusted her and was beyond disappointed. So I proceeded to embark on my new lifestyle alone.
The gluten free food options available in 2007 weren’t the most appealing to the palate. Breads were extremely expensive and were dry and crumbly. It seemed like gluten was jumping out at me from the least expected places. I had to question everything I put in my mouth. Reading labels was also hard to learn because of the different names that darned protein is disguised as like malt and spelt. And with each realization, like malt, a whole new section of foods were too, off limits.
I also had to throw out everything I knew about cooking and baking and start over from the beginning. I tried various different flour mixes, both ones I bought and those that I made myself, but all I ended up doing was producing inedible foods while draining my pocketbook. It took months and even years to master the ends and outs of my new lifestyle, and I am still learning new things all the time.
I visited a nutritionist that my gastroenterologist recommended and left with less certainty and knowledge than before I went. As I mentioned in my second post she also suggested a pro-biotic and natural Chinese herb that was supposed to aid in my healing and only ended up poisoning me, as it was bound with wheat. I know no one forced me to take the pills, but I also trusted her and was beyond disappointed. So I proceeded to embark on my new lifestyle alone.
The gluten free food options available in 2007 weren’t the most appealing to the palate. Breads were extremely expensive and were dry and crumbly. It seemed like gluten was jumping out at me from the least expected places. I had to question everything I put in my mouth. Reading labels was also hard to learn because of the different names that darned protein is disguised as like malt and spelt. And with each realization, like malt, a whole new section of foods were too, off limits.
I also had to throw out everything I knew about cooking and baking and start over from the beginning. I tried various different flour mixes, both ones I bought and those that I made myself, but all I ended up doing was producing inedible foods while draining my pocketbook. It took months and even years to master the ends and outs of my new lifestyle, and I am still learning new things all the time.
All that being said, when I look back on the weeks and
months after my diagnosis it is easy to get lost in the pain, sickness,
frustration and anger I experienced and forget about all the good that has come
from my diagnosis. But in more ways than just my health, having and knowing I
have Celiac disease has completely changed my life. I think it is just as
important, if not more so, to think about the good aspects that has made my
diagnosis a blessing in disguise.
First and foremost, since my diagnosis, a lot of problems, both health and mental, can be explained. My entire life I have struggled with various physical issues from endometriosis, chronic strep, sinus infections and lactose intolerance to mental issues like anxiety disorders, depression and difficulty learning and paying attention. My doctors and I worked to treat these individual issues, with little success. Since my diagnosis I have seen a huge change in how my body responds to other ailments and most noticeably I have seen how easily I can learn and retain new information. For the longest time, especially during the latter part of my teens years I often wondered what was wrong with me, and that I felt stupid. Everyone it seemed, teachers, my parents and friends all couldn’t figure out why I couldn’t understand basic concepts and information I was taught in school. Although now you couldn’t pay me enough to go back to high school, I often wonder if I had had the diagnosis, how different my school life would have been.
First and foremost, since my diagnosis, a lot of problems, both health and mental, can be explained. My entire life I have struggled with various physical issues from endometriosis, chronic strep, sinus infections and lactose intolerance to mental issues like anxiety disorders, depression and difficulty learning and paying attention. My doctors and I worked to treat these individual issues, with little success. Since my diagnosis I have seen a huge change in how my body responds to other ailments and most noticeably I have seen how easily I can learn and retain new information. For the longest time, especially during the latter part of my teens years I often wondered what was wrong with me, and that I felt stupid. Everyone it seemed, teachers, my parents and friends all couldn’t figure out why I couldn’t understand basic concepts and information I was taught in school. Although now you couldn’t pay me enough to go back to high school, I often wonder if I had had the diagnosis, how different my school life would have been.
For every five people that I have struggled to explain my
diet and lifestyle to, is one person that has been supportive and
understanding. In particular while working for Carnival Cruise Lines in Colorado Springs (I bet
you never thought a cruise line would have an office in a land locked state!)
my coworkers would bend over backwards to ensure I could eat comfortably and
safely. At the time of my diagnosis I was working for an architectural firm and
during an employee outing my boss actually called out the chef and manager of
the restaurant and went over the diet with them so that I could take part in
the festivities. It's occasions such as these that help to remind me that there are genuine people out there that care!
Of all the good that has come from diagnosis, the one thing that sticks out for me the most, has been being able to share what I’ve learned with others that are newly diagnosed. Soon after moving to St. Louis, I was standing in the gluten free aisle at a local grocery store when I was approached by a lady who had been staring blankly at the shelves. The lady approached me and explained that she had been diagnosed within the last week, had only lived in the US for a few months and couldn’t read English well enough to know which foods she was allowed to eat. Even though I was already running late for work I stopped and did my best to explain things to her, and recommend some products I knew would taste ok. I never saw or heard from that lady again, but that was the first time I thought that maybe I had this disease for a reason, and that I could use it to help someone else!
Of all the good that has come from diagnosis, the one thing that sticks out for me the most, has been being able to share what I’ve learned with others that are newly diagnosed. Soon after moving to St. Louis, I was standing in the gluten free aisle at a local grocery store when I was approached by a lady who had been staring blankly at the shelves. The lady approached me and explained that she had been diagnosed within the last week, had only lived in the US for a few months and couldn’t read English well enough to know which foods she was allowed to eat. Even though I was already running late for work I stopped and did my best to explain things to her, and recommend some products I knew would taste ok. I never saw or heard from that lady again, but that was the first time I thought that maybe I had this disease for a reason, and that I could use it to help someone else!
It has been four years since I have come across that lady in
the grocery store and there have been countless opportunities since then for me
to reach out to others that also have Celiac disease. My ability to speak with
others and to write here and hopefully reach people has given me a new lease on
why I have been given so many medical and health problems. And even if I
haven’t reached anyone, or made a difference in their life, being able to share
and write has made an extraordinary impact on my life and health, and for that
I am most grateful.
