Sunday, May 19, 2013

Phone Calls

I got the "you have celiac disease" phone call  5 years ago, about 2 months after being diagnosed with hypothyroidism.  Two autoimmune diseases in one year didn't even phase me or yield a tear at the time.  I've probably only cried a handful of times about my celiac, and never about my sluggish thyroid.  This might seem a bit odd considering that my favorite cuisine is Italian - pasta, pizza, bread, cannoli, tiramisu, etc.  Maybe something my best friend said helped.  As I was sitting outside my doctor's office in my car, after I described my symptoms, she said, "maybe you have MS."  Thankfully, I did not.  It could have been worse.  Maybe it was because I pretty much diagnosed myself and knew what was coming.  The phone call just confirmed what I already suspected.  Maybe I wasn't too upset because we were just about to leave North Carolina to move to Orlando, and I was leaving the best pizza restaurant in the United States behind.  I would not have to watch my husband and kids eat pizza that tasted just like the pizza we had enjoyed during our trip to Rome years before.  Plus, I was moving closer to Disney, my favorite vacation spot, where the restaurants are allergy friendly.

After living in Mooresville, NC for a year, I began to experience numbness in my feet while standing in church for prolonged periods of time.  I didn't really notice it when I was teaching, because I was always walking around my classroom, so I didn't think much about it.  I also started to notice numbness and pain in my hands all the way up to my elbows, but blamed it on the fact that I was spending too much time typing history notes every day.  I finally went to see a local doctor about the pain in my arms.  During the examination, he noticed that my thyroid seemed to be enlarged.  Two days later, my doctor called and told me that my thyroid was a "slug" and I would have to start taking Synthroid.  One pill every morning.  It seemed pretty easy to me.  No big deal.  My dad is a pediatric endocrinologist, and he wasn't concerned.  Hypothyroidism is not uncommon in his family.  Did I have symptoms?  Maybe I was a little more tired than normal, but my twins were 3 and I had a new job, so I wasn't concerned.  I had been struggling to lose a pound or two, but I chalked it up to lack of exercise, and age as I neared 40. 

Towards the end of the school year, I began to do some research online, and discovered that numbness in your extremities (hands and feet) can be a symptom of nerve damage, caused by prolonged B12 deficiency.  I finally went back to my doctor's office as my symptoms became more unbearable.  The physicians assistant I saw had the same thought that I did, and had me tested for B12 deficiency.  A nurse called me several days later to tell me that my B12 levels were very low, and that I  would have to come in and learn how to give myself B12 shots.  Again, no big deal.  I had been dealing with allergy shots for years.  As I researched the causes of B12 deficiency, I read that it can be caused by celiac, a hereditary disease that my aunt had.  I had to ask to be tested for celiac.  Sadly, no one in my doctor's office even thought to wonder why I would be so B12 deficient.  I am so thankful for the Internet!  

I got my next phone call a couple of days later.  This time, I was told that I had celiac, and I should probably look into a gluten free diet.  Probably!!!  How about definitely!  I ordered Celiac Disease for Dummies from amazon, and I started a gluten free diet a couple of days later, after eating one final Sebastiano's pizza.  

The numbness and tingling in my hands and feet have lessened over the years, but I have probably suffered permanent nerve damage that will never completely heal, and I still have to give myself B12 shots to keep my B12 levels at a place that is healthy.

I shed a few tears as I proofread this post, but I am not  sure why.  I'm so thankful my diagnosis wasn't anything worse.  I have a supportive family.  I eat amazing food every day.  I rarely feel that I'm missing out on anything.  Plus, feeling sorry for myself will get me nowhere.  I do hope, though, that I'm done with phone calls from the doctor for a very long time.  


  1. This was a very insightful post, Alexis. I had no idea how those symptoms could lead you to discovering Celiac. I am looking forward to your posts and hope I will get with it and try out some of your recipes. Your meals do look delicious! Enjoy this new phase of your life!

  2. Great post, nice job! I've never been happier to be wrong!!!

  3. I can relate to how you feel. I have moments when I feel like "poor me" dealing with my son's multiple food allergies. I start to feel like medicine is all just a joke and nothing would really happen if I gave him a peanut or milk or an egg or a cashew or..... But then I remember how lucky I am that as long as we avoid those foods, he is totally healthy. I am thankful he doesn't have a serious disease or leukemia or cancer. We are so lucky and blessed that as "bad" as we feel our situations are, they could always be much much worse. Congratulations and good luck on all the new changes in your life!

  4. Great post, Lex! And way to look at it from a positive angle as opposed to going the other way. You're a strong, vibrant woman that I am proud to call a friend. Thanks for sharing with all of us.

  5. Just reading your post and so glad you were able to find out what was going on with your body. I wish we could have met! I just moved from Orlando to north Alabama. Am missing my safe places to eat. You did move to a great place! I loved eating out there and of course miss Chamberlin's. I have some good places listed on my blog if you haven't tried .. Some in Winter Park.

  6. Thanks for your post Alexis. I too am from NC and years ago was diagnosed with hyperthyroidism and B12 deficiency. I also had my gallbladder removed since it died quickly after that. I had some sort of inflammation in my stomach that would not go away. I healed more after thyroid meds but I always had some stomach issues. My graves went into remission. I just moved to Orlando and now I am suffering with stomach ailments again and found out my graves is back . I have not been tested for celiac but went ahead recently and started gluten free. I have read about the connection with these 3 ailments. I am hoping for some relief from the constant inflammation of my insides. Thank you for the help in finding where and what to eat!

    1. You're so welcome! I pray you find some relief on a gluten free diet.