Raising Celiac

Two years ago today I earned yet another badge on my mommy sash to go next to my allergy/asthma mom badge. I have had this badge since my son was born six years ago and was getting used to it. I was used to being the crazy mom who followed a kid around a party making sure nothing had nuts in it and always armed with an Epi-pen and inhaler on a moments notice. It became my new normal. I believed I hand a handle on life…that was until two years ago when we finally figure out what caused all my daughters stomachaches. Yep, she has Celiac. Ironically the results came to us on the first day of celiac awareness month (which is May). As the doctor told me the results, I felt relieved and terrified all at the same time. I was officially a fish out of water on this one. With my son, there was a background of knowledge since I grew up with asthma and allergies myself. Now I was just a crazy mom with a diagnosis and the Internet to educate myself, scary combo to say the least. Now don’t get me wrong, her doctor didn’t just tell us the news and send us on our way. We got a referral to a nutritionists who was about as much help as a 3-year-old telling me how to cook. I thought they would help me navigate through this, but that was the first point at which I knew I was alone in this battle and would have to educate myself.

Just so we are clear the diagnosis didn’t just come as easy as written above in a few sentences, it was filled with doctors (3 pediatricians to be exact). Everyone making me sound like I was “trying” to find something wrong with my kid. At one point, one of them even suggested, right in front of my daughter, to start drinking fast food shakes to put on weight – she was five! I had another tell me all blood work came back normal so it must just be in her head – um sure, a five-year-old knows how to play head games. I ignored all and trudged on to find someone who would listen. That saving grace doctor came one night during an urgent care visit of all places! My point is, don’t give up if you are still trying to get a diagnosis, it matters to keep fighting. Believe is your “gut”!

So we got the diagnosis and to the Internet I went. There are TONS of resources I found out, but most were for people who dedicated their lives to living in the kitchen and cooking with about 10 different flours just for fun! I swear I never knew so many existed, who has time for this! Do I look like Martha Freakin Stuart! To be honest, this was my lowest point. I left many tears on the kitchen counter along with a lot of failed recipes in the garbage. It was then I decided I had to figure out what worked best for my family and me. So I pulled up my big girl panties and took it one step at a time. It was not easy and took a long time to figure out the basics. I would beat myself up all the time and think I must be an idiot that I couldn’t just figure out how to make it all work. All those other blogger moms figured it out, why couldn’t I? I am here to tell you that if you are in a tight spot it gets better, not back to normal, but better!

So here I am two years later and way more educated on Celiac and at times still feel like I am at the beginning. You see, the things “they” don’t tell you about are the day-to-day struggles. No one tells you how to handle pizza day at school or slumber parties at friend’s houses and just about any sports activity where you live out of your car and eat on the run. Those are the things that are hardest about this disease. Those are the things that will keep you up at night. Those are the demons you have to keep knocking out of your head that are making you want to throw in the towel. That is until you look into your kids eyes and know that no one, and I mean no one, will look out for them as you can. It is because she depends on me to put a positive spin on all of it and make it feel ‘normal’ to her. That is why I spend countless nights making cupcakes and cookies to bring to every gathering she will be attending. Why I keep trying to attempt to make her favorite foods time and time again with repeated fails. It is because of her that I will wake up in the middle of the night and write a random sticky note reminding me to make a pizza the following day to deliver to school so she can eat pizza just like every other kid. I won’t lie, it is hard but we all know we will do whatever it takes to make our kids happy and feel normal. So to all the parents going through this or just starting on this journey, my advice to you is, forgive yourself! You WILL make mistakes, you WILL forget things and you WILL feel like you are alone on an island most of the time and that is ok. It isn’t your fault, it will take time to find the new normal but know it is out there. It is achievable, I promise.

Comment below and let me know your success or failures with Celiac, we are all in this together!

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Andrea is a full time working mom with two adorable kids who combined have: asthma, severe food allergies, Celiac and ADHD. All of this makes for one crazy household and a whole lot of fun. I use blogging to get out my thoughts before they consume me. I am also a CrossFitter who loves, camping, cycling and just about doing anything with friends.