“My wife was recently diagnosed with Celiac disease and its been quite the journey from noticing an issue to trying to discover what was going on to learning how to live with the disease,” by, August 8, 2015
Where do you begin with an origins story? I know there are certainly plenty of superhero movies that can give me a story arc to show I came from humble beginnings to become something great. I don’t think this is that kind of story, but that would be fun. While this blog will certainly be about my life and how I live with an individual who has Celiac, this story is also about my wife.
My wife was diagnosed with Celiac Disease about 6 months ago. The easiest way to explain this journey is describe where she was and how much her body changed. In November of 2013, she completed Ironman Arizona. I was so incredibly proud of her and the journey she completed to get to that point. It is such a physically and mentally challenging event to complete and she did it while still having a smile on her face at the end (she got out all the ugly cries in the 140.6 miles leading to the finish line).
However, in the few months leading up to that race, she was starting to notice that she felt different. She was more sluggish, didn’t seem to have the same energy to train as she used to. We thought this just could be workout fatigue in leading up to such a grueling endeavor, or that she wasn’t eating enough (despite already eating us out of house and home!)
After Ironman, her energy and attitude continued to decline. She was exhausted all the time, and would sleep on every commute to and from work. She would get stomach pains after she ate any meal. She eventually became afraid of eating. Her hands would turn blue. It became painful for her to move because her joints hurt so bad. One day her pants would be loose from all the weight she had lost, the next day, the same pair of pant wouldn’t fit because she wast so bloated. She started throwing up blood.
It was difficult to navigate as a man! Do I tell her she looked skinny? (I hear girls like to hear that…) Would that make her self conscious the next day when she had to jump up and down just to get her pants on? So many questions I had…so few answers…because she was sleeping all the time!!!
We started working through selective diets to try to figure out what was going on. We tried dairy free, the FODMAP diet (I’m still not sure what that is), gluten free, gluten & dairy free, the paleo diet. I think we went through every kind of diet we could find. When we finally got in to see a gastroenterologist, we weren’t given many answers.
The first GI said she probably had an infection and threw some antibiotics her way. They basically made her radioactive. (I wish I would’ve checked to see if she glowed in the dark.) The next called for another colonoscopy and endoscopy, and wanted her to be symptomatic for them. It’s not a very pleasant process to make yourself sick just to maybe get a diagnosis. The look on her face as she downed a pizza and ice cream was fantastic though! Despite everything going on, this doctor told her she was perfectly fine, and to just start taking a probiotic. (It took two more doctors and about 21 different blood test and another look at those slides from prior colonoscopies to get a diagnosis.)
She went back to eating gluten free, but that become much more challenging than we anticipated (much more of that in future posts). Did you know that soy sauce has gluten in it? I found this out the hard way, when I was woken up to my wife throwing up bile in the middle of the night in our bed while she slept. I don’t mean to be overly graphic, but do want to show how extreme it really is.
A gluten sensitivity/intolerance is much different than celiac disease. That is not to make light of individuals that do suffer from gluten sensitivities, but while similar, they affect the body differently. If I drink a beer and then go and kiss my wife on the lips, she could very well get sick. She has to wash her hands if she makes me a sandwich with regular bread. It was becoming too much to keep things separate, so I decided to join her in eating gluten free (but only at home, lets not get crazy, I still love me some gluten!)” About Josh Anderson.
Do you have a ‘journey to diagnosis’ that you care to share? Please feel free to comment below.