In 45 minutes I head up to see a G.I specialist here in Phoenix. Jack came to me several months ago and asked if he could go through the testing for Celiac Disease. He was very serious and I could tell he had spent a lot of time thinking about it. He told me he felt like he needed to know if this was something he was going to have to live with his whole life. He wanted to know if when he was " glutened" if it was damaging his body or not and what that would mean for the future. He wanted to know so that he could better combat the social struggles that come from being different from all the other kids at school. He wanted to know...for himself.
I went to my room and cried...and cried... You see to get tested for celiac after being on a gluten free diet for so long, Jack will need to eat the very thing that makes him sick for about two months. Essentially, he has to damage his body ( intestines specifically) so badly that when they do a biopsy at the end of the 6 weeks, it will show conclusively that he has celiac. I cried for two reasons. first, I know what eating wheat will do o him, how his body will hurt, how emotional he will be, how sick he will eventually get from an immune system that is shot. no mom can feel happy about hurting their child. Can I even feel o.k with knowing what I am allowing to happen to his body?? Second, WHAT IF I put him through all that pain and the biopsy comes back negative? What if he goes through all that only to discover its NCGS or non- celiac gluten sensitivity??
There is one other test I can ask for instead of putting him through the pain of eating wheat, its a genetic test. This was recommended to me by one of my favorite Dr.'s at the CDF conference two months ago and what gave me the courage to see this through for jack. While I feel like its our best and least painful option, Mike and I have already decided that if the G.I Dr. here feels like we need to do the biopsy, then we will. At some point in all this I have to trust a Dr. somewhere.
Originally when I called to get the appt. We could not even get in until the end of July, after school starts. I was devastated, because last time jack even had 2 bites of cherrios ( link for that HERE) he was a mess and missed 2 days of school. Yesterday I got the call saying they had an opening if we could come. This would allow Jack to go through this process with out interfering with his schooling. A HUGE blessing!!
I am so nervous and scared, if this does not go well where do we go?? what do I do? This morning I called this insurance agency and trying to remeber specific information of how this has all played out so that my emotions will not get the best of me. If you are curious as to how we went Gluten free in the first place I blogged about it about a year ago, here is the LINK for that.
Anyway, blogging helps calm me down. I have so many thoughts and emotions about it all and not time to write them out completely. But for those who know and love us, I wanted to give the basic information about it all and ask that you keep us in your prayers because I have no idea what the next few weeks will bring for us and most importantly for little sweet Jack.
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