Tuesday, December 30, 2008

And now for something completely different

Theresa just pointed out this article to me in Parents magazine, and I thought it important enough to share with all of you. It is about kids with Celiac disease.

The reason that Theresa pointed it out to me is that three out of our three children have Celiac disease. Although more information is available about it now, according to the article, for every child diagnosed with it, seven are not. And perhaps more importantly, it is a very common disease. One child in every 130 has it. Which is why I chose to highlight it in this blog post today.

We have 226 teams in the race, which means that we have 452 racers. Each racer has relatives - siblings, cousins, nieces and nephews. Many probably have grandkids. It is very likely that all of our racers and their families represent over 1300 children. Which means statistically that 10 of them have Celiac disease.

If you've never heard of it, Celiac is an autoimmune disease triggered by gluten, a protein found primarily in wheat. When gluten is ingested (even in extremely small amounts) the immune system attacks the small intestine. When this happens, nutrition cannot be absorbed. In Grayson's case (one of our twin sons) this caused malnutrition, lethargy, and intestinal disorders. We had to change pediatricians to get it diagnosed as our original pediatrician thought that being underweight was healthier than being overweight. But once diagnosed and placed on a gluten-free diet, he started thriving almost immediately.

I wanted to post this information, because Celiac is much more common than previously thought, and as was mentioned earlier, it is often misdiagnosed, or not diagnosed at all. Most confusing of all is that there are a wide variety of symptoms that might manifest themselves, lending additional difficulty to sorting it out. But if you have noticed unexplained symptoms in your children (or adults in your family, for that matter), you might consider this information. Also, the links above will take you to a couple of very informative web sites about this disease.

Well, enough of our Public Service Message for today! If you haven't read the comments responding to the December 27th post, you might want to do that. And if you haven't left a comment, please do! There have been some very helpful tips posted there, and it gave me an idea of a thread to start in the ADSR4 forum. And while there, I just saw that little dragon has started a poll! It'll just take a second to pop over and vote - and you can leave a comment if you wish. (Feeling a little anxious yet!?) :)

8 comments:

Rachel said...

I don't personally know anyone who has this disease, but I wanted to share a blog with you and your family. This woman has a child with the disease and has posted one crockpot recipe each day for the last year that are all gluten free.

http://crockpot365.blogspot.com/

It may be of some help to you and your family in meal planning as I have heard that it can be difficult avoiding gluten.

Rachel

Penny said...

My 26-year old nephew has just recently been diagnosed with this disease. It came on rather suddenly and took quite a bit of time to determine what was wrong. By then he had lost over 20 pounds. He is now eating gluten-free and is doing great! Thanks for the good information!

Antje said...

I also know a family where both boys have been diagnosed. The older one was nearly 3 when they found out - he lost weight dramatically and had to go to the hospital - where they found out. His brother was still a little baby back then and as the whole family had changed their nutrition plan to accomodate the older boy, he never ate anything with gluten. But he was also diagnosed with that disease when he was one year old.
It really causes some problems in kindergarten, even with drinking (e.g. apple juice often contains gluten) - in his case, the kindergarten now buys different juices and chocolate milk to make it easier on him.
It's good to be aware of this disease as it really can be unnoticed for quite a long time before it becomes critical.

Nancy said...

I have a friend who was diagnosed at the age of 40 after 8 years of doctor hopping. Aside from the intestinal issues, she had anemia (common) and she chewed ice incessantly (maybe uncommon, but known to be a symptom).

Although I am not celiac, I am allergic to wheat. It is a mild allergy, so I can have some,but it often causes mouth ulcers.

And when you have one autoimmune disorder, you often have more than one as the genetics traits are similar. My friend and I both have thyroid disease - hers is Hashimoto's and mine is Graves.

2boys4me said...

I'm a first time ADSR racer (1/2 of team 34) and just stopped BY to say my son has celiac and has been on the diet a little over three years. Here's to more publicity and better labelling in 2009!

Shelby said...

one of my girlfriends just had her 3 year old diagnosed. she was having such a hard time with her little girl (she was just SO moody, clingy, and never happy). then she got diagnosed and put on a gluten-free diet-that's when she transformed into a totally different little girl, social, happy, and no more belly-aches! i think the saddest thing for my friend is that she is an amazing baker and it's hard to make most of her recipes without flour or gluten!

Rose said...

My nephew was diagnosed with this condition last year. On top of it, he also has had diabetes for 5 years (he's only 9) so life is very hard for him. I will pass the article on to his mom.

Anonymous said...

My daughter was tested for it when she was 6 months old. We were having food and weight issues. Came to find out she didn't have it but it was very scray to think about all the issues with food allergies and disesaes. Thanks for posting this for everyone!