Celiac Journey: Part 3 -- Biopsy results lead to more questions

Do I start with the doctor's quote of the day, "I'm so surprised", or do I cut to the facts ... hmm ... these posts aren't getting any easier to write.

So, about 3:30 today (a very busy and hectic day back at work) I started checking my clock about every 30 seconds, and checking to see that my phone was working every other 30 seconds. At 4, I followed the doctor's instructions and called her office, and after being transferred 3 times an assistant informed me, "all the tests were normal."

I think my response or lack of one clued the assistant in that a consultation with the doctor was in order. The assistant said she would check with the doctor about "what we should do now" and get back to me. It was already about 4:20.

Just before 5 Dr. Grothe called me. (Thank you ... it was wonderful to talk directly with her). In short this is where we're at:

• According to pathology the intestinal biopsies were normal (negative for celiac according to classical definitions)
  
• Dr. Grothe is very surprised by this and is not ruling out Celiac. (I had read about false negatives, biopsies that are hard to read, and other things that make it less clear cut but had hoped we wouldn't be dealing with those situations.) She mentioned something she referred to as subclinical celiac (along with a few other medical words I didn't have a chance to write down).
  
• The doctor will review the biopsy herself as well as consulting with another doctor (I didn't catch the name but she used the words 'International Celiac expert')
  
• Will run another celiac blood panel (not because she doesn't trust the initial one run by Allergy Associates, but just to be sure)
  
• Will run the genetic testing for Celiac as well (Mayo does do this test in their lab)
  
• Nessa's other test results did show that she's slightly anemic and that can be associated with Celiac. And her other test results did not show evidence of anything else wrong (these included various vitamin/mineral screens as well as a 'stool study')
  
• The doctor said at this point she would still very, very strongly recommend a Gluten Free diet based on what we know, but feels it's important to continue with some additional testing and analysis to both make sure we aren't missing something else that could be related to her symptoms, and also to confirm (or still possibly rule out) Celiac so that we know exactly what we are dealing with (there are other forms of gluten intolerance as well but Celiac has additional implications associated with it).
  

So ... we will be talking with Dr. Grothe in more detail on Monday. With any luck my exhaustion will lift just enough to post some of Nessa's birthday pics before then.

And I can't forget to add that even the doctor said how beautiful and adorable Nessa is, and how great she did at her appointments!