Our Family

Our Family
"These are the children God has graciously given to me. (us)" - Genesis 33:5

Friday, June 23, 2006

Coeliac Center

I know, some of you may think I misspelled Celiac, but in actuality that is the correct spelling. It was us silly Americans who can't stand too many vowels together who decided to drop the "o" and spell it Celiac. Either way, it still the same disease. And come to find out it's been around since the first century!!!

We went to an inaugural meeting down at Newton-Wellesley Hospital on Tuesday night. We were invited because we are one of many parents with children who have recently been diagnosed with Celiac Disease from that practice. MassGeneral Hospital for Children wants to establish a Celiac Center that will meet 3-4 times a year with one or two bigger Greater Boston gatherings. They would like to establish a way for everyone to not only be involved in the latest information, testing, and foods available, but also give us a way to connect with other families who may be struggling in similar areas with their children.

The meeting had a great turnout, standing room only if you were late, and they also provided plenty of gluten-free foods to try and enjoy. It was a wonderful way for us to try some new foods, without having to spend the money and find out we don't like it. They even gave away samples of Pediasure, Boost, cookies, crackers, fruit snacks, etc. to anyone who wanted them.

The testing on this disease seems to be changing so quickly its tough to keep up with. For having it be one of the oldest diseases they certainly don't know a lot about it. In fact it wasn't until World War II when they really started identifying it as a problem. Prego brain here and I don't remember all of the who's and what's of the history books, (not my strong subject in school) but basically during the war, one of the countries over in Europe had been completely cut off from any wheat containing products. In that time, despite some of the hunger, many people started to feel better as they were living on meat, potatoes, and vegies. When the war ended and the supply started coming back in, many of those same people became sick again.

It is still difficult for the medical community to agree on the best way of testing individuals for this disease. We've found even in this short time that most of the medical community still don't even know what Celiac Disease is, never mind know how to test for it. Even the speaker at the meeting we attended agreed that most of us in that room knew more than half the doctors out there. Why? Well, when something affects your child's life the way this disease or any disease for that matter does, wouldn't you research and try to learn all you could about it for your child's sake??? Even the dieticians in the room, said that after the first meeting with parents, generally the parents come back to the next meeting knowing more about the diet than the dietician did. One of them even suggested that maybe they should try the diet for 6 months and see how difficult it is.

We look forward to many more of these meetings, and look forward to a time when all of the research and awareness pays off so that others may be diagnosed and treated before its too late.

For more information and/or a place to make a donation you can visit www.silly-yak.com . We ordered some bracelets and a t-shirt for Ethan because really he is our little Silly Yak!!

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