Relief...Fear

Well, my husband tells me that this will be a good way for us to jot our thoughts down as we progress through our day to day routines. We have some friends who do a blog for their daughter who has Williams Syndrome, and have found it's a great way to communicate what's happening with their family to everyone they've come in contact with; both family and friends.

As most of you know Ethan our 3 yr.old little boy, was diagnosed on Friday Feb. 3rd with Celiac Sprue Disease, also known as Celiac's Disease. It's becoming more commonly diagnosed because the docs are becoming more aware of how it can present itself in their patients. It's occurence as of now is 1 in every 133 persons in the US. Many people have it and aren't even aware as they can be asymptomatic for a long time. But the damage is still being done to their bodies.

We are VERY fortunate that Ethan was diagnosed now at only 3 yrs. old. The damage done to his intestines is reversible, and he won't have any long lasting symptoms once his diet is completely changed. However, left untreated many irreversible symptoms could have occured ruining his digestive system.

We thank God that a close friend of ours didn't give up on us when trying to suggest the possiblity of him having Celiac's. Without her persisitance I wouldn't have called the pediatrician to set up the tests. We haven't told Cheryl this yet, but we consider her friendship a blessing. She has been dealing with Celiac's for quite some time now, and thanks to all of the information she has given us for the past several months we were prepared to deal with the news of his diagnosis more so than most. In fact the GI doc was more surprised that we took the diagnosis all in stride!

We have set up an appointment to meet with a nutrionist on Feb. 14...Happy Valentine's Day!! At least the gluten-free dark choc. we've tried is VERY tasty...and I would know as I am a chocoholic. In the meantime, research on line, books we've already purchased and the info that Cheryl has already given us is proving to be educational as well as overwhelming. You know the more you learn the more anxious you can become, and as the mom of a 3-yr old, you always worry about how your child is when they are out of your sight. Well, now I get to add one more worry to that list...whether or not he'll get any gluten in his system.

Not only do we need to educate ourselves to help prevent any contamination with gluten in his food, but we also have to educate those who will be in contact with him; both relatives and friends, so they can understand how to feed him, as well as how important it is that he not come into contact with anyone else's snacks. Easier said than done as anyone with a toddler knows. They eat stuf off the floor whether it's food or not...yuck!!

So, we will try to keep this blog updated as often as the infant allows me computer time! :) In the meantime for any of you who would like to learn more please check out the website www.celiac.org for more info.

-Michelle