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:


Jennifer said...

Hey Melissa! I'm sorry to hear about the diagnosis. No worries though. I have Celiac Disease and eat very well. Please contact me and I will send you some great resources.
Jennifer Riddle

Shae said...

Momma's ALWAYS know best- thank goodness you kept on persisting. He is lucky to have you for a momma! Now call that doctor and tell him he was wrong...and that your friend is a med-mal lawyer ;) Joking, just joking.

Ebes said...

Yea Mel!! What a relief for you. I am so proud of you for sticking to your guns and finding out what was wrong. Super mom!! Can't wait to see the results of the entire family's test. love you!!

Jill Williams said...

You are such a wonderful mother! I'm sorry to hear this but thankful you know what it is and you can now work to manage it. We will have to talk soon. I have been working to put together a section of my website specifically for gluten free diets. I have one lady I have been in contact with and also getting facts about what kitchen tools can absorb gluten and shouldn't be used when cooking gluten free. I would love to have any info you happen to come across. This is a serious issue that I want my customers and fellow consultants to know about. I hope you are all well in TX, we are trying to dry out and put the city back together here. I will continue to pray for you guys. Please say a few for us here if you will :)

JJC said...

i'm so glad you finally have this answer! way to go for trusting yourself as the momma and persisting on carson's behalf. i am sad that he does have this allergy, though. i am hoping for him that celiac disease does not have the "touch allergy" components that a couple of em's friends have...meaning that they will have reactions if they are touched (even hands) by their given allergy foods. just the other day i was at the grocery and noticed that the woman behind me had gluten free cake mixes. if this is something that he could eat, i am thankful that these products are so readily available. and, i have been out to eat at fresco's in keller with a celiac friend who was able to order from their gluten free menu.

will continue thinking of you and praying for carson, too.

Sally said...

wow. you were right mama!!! so proud of you!!! and thankful for some answers for you all right now!!! love love love!!!!