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The Waiting Game

Hi, it's Alexis.  Last week I received bad news.  Although it’s preliminary, Dr. Fasano’s nurse emailed my mom and said that the preliminary biopsy reports showed that there was little to no healing in my small intestine.  Of course, we wanted to know more but Dr. Fasano is away until next week and hasn’t even seen the biopsy report.  I was left devastated and crying! 

So what does this mean?  I wish I knew!  My mom thinks that I will need to continue on this fresh food diet for another few months and then they will want to do another endoscopy on me.   My dad has a friend who’s a gastroenterologist and he said it can take up to a year for my body to heal.  Everyone has their opinions on what they think but the only opinion I care to hear his Dr. Fasano.  I wonder if he expected a normal biopsy or if this is what he expected?  I wonder if he is going to be as disappointed as I am?   Does this mean that I have refractory celiac disease?  I won’t know anything until next week.

This news about my biopsy report was a dagger straight to my heart.  I really thought that I was going to get good news and that they would slowly put me back on some of the gluten free foods I love.  I’m feeling as good as I can and I thought my body would tell the same story. I just want to get good news and be normal again. 

On a positive note, the dietitian let me add into my diet- air popped popcorn!  At least it is something new for me to eat. I seem to eat the same things everyday and its getting quite boring.  I think I might turn into an egg or a turkey burger!  We are also going to attempt to make our own peanut butter.  One of my favorite treats is apples and peanut butter and I miss it so much!  If I could just add a few more things into my diet, it would be so much better.

Alexis at the Mall

I wanted to let you all know that this will be my last blog.   Thank you all for following my blog and showing your support. I wish that we had a happy ending to my story but I have a feeling that my battle is not over.  Hopefully soon I will have my happily ever after. But until then, I will keep fighting and continue on with a positive attitude.

- Alexis

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