Koiliakos

Koiliakos...a word I had not heard of until 2 days ago, but a word that will now become a part of our life.  It means "suffering in the bowels" and you may know the people it refers to better as Celiacs.

If you read my last post, you already know that Spencer was going in for an endoscopy with biopsies earlier this week to check for Celiac Disease.

That morning, he was very nervous about the procedure.  After the nurse, the anesthesiologist and our GI, Dr. McOmber had come in and explained things to him, he was a bit more at ease and did a great job!  They were all fantastic with him.

The procedure took a total of 7 minutes to complete and soon after Dr. McOmber came out to talk with me.  He had some pictures that he had taken and explained that everything looked good until he got to the duodenum, or first part of the small intestines.  He showed me how the color changed a bit at this point and the nice folds that we had seen in the stomach were not there.  He told me that he could not say for sure until we got the biopsy results, but that the damage he could see was what they normally see in a person with Celiac Disease.  I then went back to the waiting room to wait for the nurse to let me know that Spencer was waking up and I could go back with him.

He looks like he's having a good dream doesn't he.  I believe he was.

 

At one point Spencer looked over at me like this and said, "Mom, I went to the moon!"  He later told me more of his adventures of jumping in the craters of the moon and feeling like he was flying.  He also went to Mars.  When I asked him what Mars was like, he said, "it was red."  He said that he went to these places alone.  He also did some time traveling.  He couldn't remember where he went, but he did travel in the Tardis.  Yes, he is a Dr. Who fan.  :)  Of course Spencer doesn't remember any of this.

 So, the wait to find out for sure if we are dealing with true Celiac Disease or not began.  Last night I got a call from Dr. McOmber that ended the waiting and wondering and confirmed that Spencer does indeed have Celiac Disease.  He told me that when Celiac disease is confirmed in a person, they rate the severity of it from 1-3 with 1 being mild and 3 being most severe.  Spencer is a 3B (I'm not sure yet what the B means).  Dr. McOmber said that Spencer is one very tough kid to still be functioning as well as he is with the amount of damage and inflammation that he has.  

We have known for years that something was going on with Spencer.  Because of some things we have tried and promptings from our Heavenly Father, I was 99.999999% sure it was something food related, but I had not been able to pinpoint what it was.  For that I am so thankful to those in the medical field who think outside the box and look at the whole person and not just go by what they expect to see. 

To find out that he has Celiac Disease is discouraging and overwhelming and yet at the same time I am so thrilled to finally know what we are dealing with.  For years he has been in pain, he has not been feeling well and finally we can learn and do whatever we need to in order to help our boy feel better.  For this I am very thankful!