Monday, December 28, 2015

Results of the Somewhat Definitive Variety

After haggling with insurance companies, finding an insurance-approved lab, and praying for a definitive result, I received an iffy one:  it does not appear I carry the gene combination most dominate in those with Celiac disease.  The conversation went as follows:

Me:  I don’t know how to read these results you emailed me because I’m not a doctor.

My doctor: Even if you were, it wouldn’t help much.  They’re not meant to be easy to read.  It does not appear you have the combination of genes that would make you at high risk for Celiac.  However, with the symptoms you had before you gave up gluten, I would have asked for an endoscopy if you were still on gluten just to check. 

Me:  So this isn’t a no? 

My doctor:  It’s a probably not.  You seem to react very negatively to gluten and I wouldn’t eat it, especially with your thyroid issues.  But if I had to bet, these results mean your husband is probably the only genetic link for your daughter.

Good news, probably.  We went on to discuss the difficulty of diagnosing Celiac and how there should be an easier way, but it’s usually a game of putting puzzle pieces together from a variety of tests to find the closest fit.  For Wren it was an easy diagnosis due to her nearly starving, and for D all the pieces fit and his tests were positive.  It doesn’t look like, despite the range of other auto-immune problems I’ve experienced, that Celiac is likely to be a part of the equation for me. 

What changes?  Nothing.  I have been much better off without gluten and we don’t keep it in the house.  What should have changed for me emotionally was that I should have felt a sense of relief.  Oddly, I stood in my kitchen after putting down my phone and fought back tears.  I recognized it immediately: survivor’s guilt.  My daughter and husband still have this disease.  They still deal with the everyday effects on their lives; they suffer due to lack of knowledge on how to fully treat this disease; if new research is accurate, they are at higher risk of suffering other illnesses or earlier death than previously thought due to this beast that refuses to yield. 

I know their lives are in God’s hands; I know we’ve been blessed as they’ve made progress.  I also know me having Celiac would not have made them have less Celiac.  It wouldn’t have benefitted either of them for me to suffer as well.  But maybe in a sense it would have benefitted me as I’m struggling with the idea of getting off so easily when D has more GI procedures on the horizon and Wren still needs daily help to move stool from her body.  I don’t know.  I sometimes give both D and Wren a hard time for wearing their feelings on their sleeves and for being affected by all the little 
things.  Here’s an example:

Wren: Mom, I found this card I made you a while back.  It says you’re the best mom ever.

Me:  I remember that card.  It was so sweet!

Wren, starting to cry:  It’s just, I just……

Me:  What just happened?

D holds her in his arms and whispers in her ear.  When Wren calms down she goes off to play with Sam, and D looks up at me and I get ready to ask him what he thinks is wrong with Wren.  Does she need more selenium?  I see D’s eyes getting misty.

Me:  What?  You're upset now?

D:  You know how it is.  Things get to you. 

Me:  How does a kind card made for me make you two cry?

D:  It's sweet. She just loves you so much, then she thinks about that love, then it feels overwhelming, then she gets scared you might die.  All the normal stuff.

Me:  That is not a normal reaction.  The fact that you understand it means you are both wired wonky.

But I stood in my kitchen after talking to the doctor and told D apologetically that I did not share his illness. 

D:  That’s good.  We’re happy for that.

Me:  Then why do I somehow feel completely disconnected from you and Wren, like I can’t help you properly anymore. 

D didn’t say because I’m wired wonky.  He just shook his head and said, “You take care of us.” 

This is supposed to be a good news blog post, but apparently I am also wired wonky so it’s more of a mixed feeling deal.  I’m happy for not being afflicted with this disease.  I’m sad because two of my most loved people are and I can't change it.  I'm left to sit still with that reality and figure out what it is I'm supposed to learn.  

For the whole story on why I didn't take the traditional route for testing, click here.

No comments:

Post a Comment