As many of you have probably noticed, due to the invite on Facebook, the Eleazarraraz family is super stoked for September 29th in Kansas City. At Arrowhead Stadium on this day there is the first annual Making Tracks for Celiacs Run/Walk to be held in the KC area. These run/walks have been held for years all over the United States, but this is the first once close to home. So of course we are jumping at the opportunity to participate and to do our part to raise money and give back to raising awareness and research for Celiac Disease.
Here is a little info on Celiac Disease. Celiac is an autoimmune disease that effects 1 in 133 people. Individuals with Celiac cannot have gluten (wheat, barley, or rye). Many people go years or their entire lives without being diagnosed or they are misdiagnosed. Many people that have Celiac are diagnosed with irritable bowel syndrome, or other digestive disorders. A lot of people confuse Celiac Disease with an allergy, which it is not. When someone with this disease ingests gluten it instantly starts attacking the villi in the intestines. Villi are very small, finger like, projections on the small intestines that allow vitamins and nutrients to be absorbed into the body from the food we eat. Gluten breaks down these villi until they are non existent which then inhibits the absorption of all these vital nutrients. Going undiagnosed or not taking care of yourself if you are diagnosed can be very dangerous. Not only do you feel bad, but it can also lead to numerous other health issues from thyroid disease to cancer. So steering clear from gluten is very important!
Heres our story...Our daughter, Sofia, was diagnosed with Celiac Disease in the fall of 2008. She was born a perfectly healthy baby and continued to thrived until she starting eating table food. From 9 months of age to 15 months Sofia had stopped gaining weight and had actually started losing weight. We had started to become concerned when her spine started to stick out and her belly became distended. She had also developed dark circles around her eyes and became very lethargic. We decided to see our pediatrician to see what could be the issue. The doctors appointment left me more confused and angry then anything. I went with the idea that we were going to get answers to our questions not be left with more questions and frustrations.
The doctor's idea was to keep a calorie journal, which isn't a terrible idea, but I had the feeling that the doctor thought I was starving my child to death. I assured the doctor that Sofia ate just as much as my other daughter, if not more. She also threw other things at us like she could have cystic fibrosis or cancer. These words terrified me and all I can remember is crying on the ride home, so worried to what my little girls future would hold. All I knew for sure was that something was terribly wrong, considering my little girl didn't even register on the growth chart anymore because she had lost so much weight. In a few days we got a call that the tests and blood work all came back clean, which was a huge relief. No cystic fibrosis and no cancer, so what was it. Everyone was at a loss.
One night I get a phone call at home from a friend of mine from high school. She was a nurse in my home town and had talked to my mom about what was going on with little Sofia. She had called me that night because the symptoms my mom had described sounded to her like she could have Celiace Disease. My thoughts were Celiac what? I had never heard of this before, ever, but that phone call from my friend lit a spark of hope in me. I still believe to this day if it wasn't for her we may have never found out what was wrong with Sofia, because our doctors were at a loss and had no direction to go in. So the very next day I made a call to our pediatrician with this idea. Instantly I was discouraged once again, because the doctor did not feel this was the issue and wasn't even really willing to test for it. But I think since they were out of ideas they figure why not. More blood was taken and the tests were ran and sure enough, Celiac it was. Now let the questions begin. So much to learn, and so many fears but with God by our side and great, supportive family we eventually got the hang of it. You would not believe how many things have wheat in them! We became really good at reading labels, really fast. We were also sent to a specialist who still takes care of Sofia to this day and keeps us on track. We have blood work every one to two years to make sure she is staying healthy.
As soon as we had a proper diagnosis and got Sofia on the gluten free diet she became a completely different baby. Her energy increased ten fold, her hair started growing, she started gaining weight, she started to walk and talk, it was amazing. She has been going full speed every since. Sometimes we have slip ups and she eats gluten by accident, but it doesn't take long to figure out that she has had it and it comes right back up. It's enough for her to know that she would never eat it willingly and I'm hoping as she gets older that she continues to take care of herself.
We love this little girl and we thank God everyday for putting her in our lives. She doesn't let Celiac Disease get her down and it has become a part of who she is. As a family we have learned to adjust to her lifestyle and it's a continuous challenge to educate everyone around her of what are the do's and the don'ts when it comes to Celiac. Sofia started Kindergarten today and school lunch is next to impossible for Sofia. Everything served in a school lunch has wheat in it and cross contamination is something that's hard to prevent. That's why this run/walk in September is so important to us. Hopefully through raising money to support research and awareness there will be a cure for Celiac one day. Or if nothing else we can spread awareness for the disease to people can get a proper diagnosis and to make life a little easier for those with Celiac Disease.
If anyone is interested in joining Team Sofia and would like to walk with us in September go to www.celiacwalk.org and sign up to be part of our team. If you are unable to walk and would still like to pledge toward our cause you can also do that through our teams website which can also be found at celiacwalk.org. You can also pay by check, just contact me for details. Thanks so much for reading our story and for your support.
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