Top Ten Questions I Get About Sofia and Celiac

In the few short days since my post on my daughter Sofia and her life with Celiac Disease, I have been approached by so many people with feedback. To me the word feedback sounds kind of scary and negative but in this case the feedback has been awesome! The comments I have been receiving are mostly that people had no idea what Celiac entailed. Many just figured it was a food allergy like any other food allergy, and didn't realize it was so in depth. Not to down play food allergies at all, because they are and can be very serious if not handled correctly and in some ways I'm very thankful that Sofia doesn't have a food allergy. But that's a completely different post. The purpose of this post is to further inform all of those out there that still might have questions about Celiac.

Frequently I am asked questions about Celiac and what Sofia can and can't have. I also get the more in depth questions about the medical side of it. So here are the top ten questions I get about Celiac Disease and there answers.

1) Is Celiac a wheat allergy?

     A) No, Celiac Disease is an autoimmune disease that effects the digestive system.

2) Will Sofia ever outgrow Celiac?

     A)  No, Celiac is something Sofia will have for her entire life. She will never outgrow it no matter how old she gets.

3)  Is there medicine that Sofia can take to manage Celiac?

     A)  No, unfortunately at this current time there is no medicine to treat this disease. There are been research and I have heard encouraging news that there is something in the works but it could still be many years before something is developed.

4) What happens if Sofia eats wheat?

     A)  If Sofia eats wheat you will start to see the effects within 45mins to an hour. She will get very lethargic and then she will get physically ill. It takes a few hours for her to bounce back for it and feel herself again.

5)  What are the symptoms of Celiac?

     A)  Symptoms vary from each person. Sofia's symptoms included weight loss, fatigue, distended belly, grayish/fatty stools, dark rings around the eyes, and just and overall failure to thrive.

6)  How sensitive is Celiac Disease?

    A) More sensitive than you would think. Not only is eating wheat, barley or rye a threat for Sofia but there is also a threat of cross contamination. For example a knife that you use to butter your bread with you cannot use to butter Sofia's bread. If you stick the knife back in the butter after buttering your bread then you have to use a different butter for Sofia.

7) What do you do with Sofia when you go out to eat?

    A) It has taken alot of research and experience to be able to eat out with Sofia. We are limited to where we can go and what we can eat. There are alot of restaurants that have special menus to cater to people with special diets and you can also look up most ingredients online.

8)  Doesn't Sofia feel left out that she can't eat the same things as everyone else?

    A) Fortunately we found out that Sofia had Celiac at a very young age. She really doesn't know the difference. Thankfully the growing trend of health food stores has really given us a wider selection of foods for Sofia. There is basically a replacement for anything that she would want to eat. Plus Sofia knows that she has a special belly and she also knows what will happen if she eats something she is not suppose to.

9)  Does your whole family have to eat gluten free?

     A) No, considering Sofia can eat meat, veggies and potatoes it's relatively easy to plan family meals. The parts that get tricky is when we have spaghetti, pizza, that sort of thing. We usually make Sofia the same meal we are eating just modify it to be gluten free. Gluten free products are pretty expensive so it's not really in our budget for us all to eat gluten free.

10)  With all the planning, label reading, precautions that have to be made, isn't it hard for you?

       A)  Of course it took sometime to get used to, but hard NO! Considering the alternative to not living the gluten free lifestyle it isn't hard for me at all. Sofia is the one that has to live with Celiac. She is the one that has to learn what she can and can't eat, which she is so good at. She is the one that has to suffer the consequences when someone makes a mistake and gives her wheat. So it is not hard for me at all. I don't mind at all explaining to everyone what it's all about and make sure everyone is educated to prevent any confusion. She is my special girl with the special belly:)

These are the top ten questions that I hear most often. I welcome the questions and I'm happy that people are curious and want to know more about Celiac. So if I didn't cover a question here that you would like to know the answer to, please don't hesitate to ask.

This Moms Mission, Making Tracks for Celiacs!

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.