Wednesday, May 5, 2010

Always listen to your GUT!

No pun intended.
Finally, an answer! Is it a good answer? No, but at least things are finally starting to make sense.

Rewind back to January-- we took Carson to a GI (stomach specialist) and had an endoscopy (a camera that looks in your esophagus, stomach and intestines) to see if there were any issues. The doctor said that everything looked normal and HE DID NOT HAVE CELIAC disease.

I've emailed my family since and told them that I think the doctor is wrong. I just felt in my gut that he has the disease. He has the low IgG immune cells, he reacts terribly to wheat, and I heard the story about the little girl that was falsely diagnosed with Type I Diabetes (she really had Celiac). So, it was a long shot, but I felt that getting the genetic Celiac blood test would be worth my peace of mind.

I just got a call. He tested positive!
Thank you, God, for giving us the persistence not to just take the first diagnosis. Thank you to Dr. Gonino's team that suggested this testing. Finally, an answer!

What does it mean?
Celiac disease is an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats. The symptoms of Celiac disease can vary significantly from person to person. This is part of the reason the diagnosis is frequently delayed.

It unfortunately means that Carson is allergic to wheat and will never be able to eat it. You do not outgrow Celiac. Of course, that is devastating to hear.
It also is highly genetic. So, Nathan, Alex and I will all get the blood test done to see who in the family has Celiac. Dr. Gonino suggested that Nathan's diabetes could be because of a hidden gluten allergy. Alex's "hand tremors", etc. It's a long shot, but it's certainly worth a blood test to find out!

So, here we go again. More diets and a lot of big changes coming our way.
In this moment, I am feeling victorious for not giving up and getting an answer.
Crazy, huh?

Here is a link to learn more: