Hello! We would love to take a moment to introduce ourselves and explain why we founded Texas Celiac Kids. Our daughter was diagnosed with celiac disease at age three just two weeks shy of her fourth birthday. Like many of you, we were devastated, but happy to know what was causing her to be so sick. We were just trying to figure out this complicated world of gluten and be educated on it so we could help her teachers, family and friends know how to manage it. Our household became 100% gluten free so it could be her one safe place.
It all started back in 2010 when I, (her mommy) was diagnosed with celiac disease by an endoscopy. Back then I had NO idea what this disease really was and how to truly stay "gluten free". I will brag on my husband for a second...we were only dating at the time, but he went to the doctor's appointment with me, sat there listening to this gastroenterologist tell me how my life was about to change forever and he just shrugged and said, guess we are throwing out the food and starting over. That was when I knew he was a keeper. I will save my story for later. Fast forward to our first child, who was our entire world and the most perfect baby we ever laid eyes on (we are all biased about our kids) and she started having odd symptoms pop up at age two. She would complain of her neck hurting, severe bone pain, sores were in her mouth for about a year, her stomach would be in severe pain every single time we left a birthday party and then came the sudden and drastic change in weight. She went from her normal 3 year old weight to just .4% of her BMI in 3 weeks. She was so skinny her eyes were hollowed out and her clothes were no longer fitting her little body. That is when I called her Pediatrician and said, let's test her for celiac. She said, "only Irish descendants have that but I will throw it in with an allergy panel". See folks, that was a common understanding among the medical community years ago. The world of celiac has rapidly changed in the past 8 years alone. There are more products on the market to choose from, more awareness and more doctor's are starting to test for it, but it is still not enough.
As parent's we become our kid's biggest advocates when it comes to this disease. We advocate at school, at friend's parties, at family events, during the holiday's and the list goes on. It's a full time job keeping up with all of it and very frustrating when you have to defend or debate people that do not believe celiac is real or that cross-contamination is as serious as it is, but it does become part of your daily life and it does get easier. I went through a serious depression the first year after her diagnosis. I couldn't believe my perfect baby girl was so sick and I blamed myself since it's genetic and came from me. It was very difficult to see her in so much pain. I became a super strict celiac mom and we stopped eating out to avoid cross-contamination at all costs. Within just THREE months she was back from a 100+ on her antibody test to merely a 16...which is quite amazing considering our GI told us it would take about one year. She regained color in her skin, she was gaining weight and over the next few months her residual bone pain and sores went away.
Right now, she is less than a six on the antibody test. Our life goes on with both of us working to pay for all the dance classes, soccer practices and school expenses like many other families. We have finally adjusted and it has become our new normal. I heard my daughter say to me the other day, "mommy, a girl at school told me I was special". I asked her why she said that. She said, "I was the only one that had to be gluten free in the class". This is not the only time I have heard my daughter say something like this. There are moments, as strong as she is and as much as we EMPOWER her to be her own advocate, even at the age of just five, she still has her ephipanies where she simply says, "I wish I wasn't gluten free so I could be like the rest of my friends", with tears running down her face. My heart breaks every single time.
That my friends is why we started Texas Celiac Kids. We want to see a strong community of celiac friends throughout Texas be there for each other without judgement. We know that look from many parents when we have to say, "thank you, but our child cannot eat that...basically she cannot eat anything we do not provide for her". Then there is the dreaded email from school saying, "we wanted to know if your daughter can use (insert any gluten filled item) because we use it as a reward system for our kids in class?".
We envision Texas Celiac Kids in a way where families can go on trips or attend social events with each other four times a year and build a bond that we hope will build lasting friendships between parents and kids. We want this to be an avenue for fun adventures, educational and purposeful conversations and a community of people that you know will uplift you.
We hope you will decide to join us and please share and like our Facebook @Texasceliackids