National Celiac Awareness Day
Gluten-Free Onion Rings & Fish & Chips, in a dedicated fryer!
Today is National Celiac Awareness Day. I’m here to celebrate it and my amazing kid. We’ve been on quite a journey with her for almost two years living a gluten-free life. There are days when it’s incredibly challenging and I want to turn my brain off because I don’t want to plan one more thing. But, for the most part, we are successful in tackling Celiac Disease head-on.
I will say this, it is astounding how uneducated people are about this disease and its severity. There is a difference between gluten-free and Celiac. There is a difference between being safe for gluten intolerance and safe for Celiac. There are so many people who choose to be gluten-free, and that’s great. It’s not a choice for my daughter. In order to stay healthy, she has to remain on a gluten-free diet for the rest of her life.
The lack of standards for labeling is maddening and the amount of time I spend on the phone or chatting with companies on-line to see if something is safe for her is maddening. Some of the more shocking ones to me were gummy bears (Black Forest brand is safe!) & licorice is not safe at all! I have to check labels every time I buy something in a box or package because companies change formulas all the time. It can be safe one day and not the next. When we go out to eat we roll the dice and hope the kitchen listens to our instructions to keep her safe.
I’ve bought new pots, pans, cutting boards, collanders, and utensils that are dedicated to gluten-free items only. I have one oven that is solely for gluten-free cooking because it has a fan for the convection and if gluten goes in it can blow around. I take a kitchen with me when I travel to keep her safe.
Diagnosing Celiac is really, really difficult. It can take YEARS (the average is 6-10 years) to get a diagnosis. And, you have to be on a gluten diet in order to be diagnosed. We were very, very lucky to get her diagnosis at the ripe old age of eight. So let me tell you what happened.
My daughter was having serious skin issues and we could not figure it out. She has rashes all over her elbows, knees, and neck. We took dairy out of her diet for a while to see if that helped. Not really, but at least she knew that if she ate too much ice cream she got a stomach ache so that’s a win. We thought maybe eczema so she took oatmeal baths, I bought gentle lotions and ointments. Nothing worked. She also had bumps all over her body and our pediatrician thought the bumps could be molluscum which can take up to 18 months- 2 years to get rid of. We rolled with the molluscum diagnosis because what else could it be?
One day while eating M said she had canker sores in her mouth that really hurt. Upon inspection, they were on her gums right above her top teeth and had burst. They looked so painful. Thankfully we were headed to the dentist in the next couple days, so we just kept an eye on things.
People, find yourself a good dentist. They know all the things. After both kids had trotted off with their tokens to get their prize our dentist calmly explained to me that her skin, along with the ulcers in her mouth (what?!), and weak tooth enamel that M was probably severely gluten intolerant but likely had Celiac Disease. She asked who our primary care doc was so they could get in touch. Thankfully these two women knew each other and were in touch immediately.
The day before I hosted 47 people at my house for Thanksgiving I spent three hours at the GI doc with M. They were patient and kind and had so much information. Her skin condition was not eczema or regular dermatitis but rather Dermatitis Herpetiformis which is a result of Celiac Disease. M had to get her first blood draw and man that was fun. She had a bruise about 3” wide on her arm because she would not sit still and screamed the entire time.
We got the call a week later that Mira had Celiac Disease. Her numbers were so high they could not be measured. She had Celiac Disease; no question. We immediately removed gluten from her diet. Her skin cleared up in TWO DAYS. I’ve never seen anything like it before. Since then, she’s been accidentally glutened a couple of times. It’s awful. She is so sick when it happens but now she knows what it feels like to actually feel good.
Our biggest concern was obviously to keep her healthy, but also to get her to understand how important it was to stay off gluten. Just like her glasses, she needed to understand she could never, under any circumstances have gluten. The way we approached this was to talk with her, a lot, about all the things she could have instead of focus on what she couldn’t have. I think I have purchased every, single gluten-free flour blend to taste test with her. I made batches and batches of waffles, muffins, and cookies to find what she liked. She is rocking the gluten-free lifestyle; I’m in awe of her and her resilience. We still have times when she feels bummed out that she can’t have pizza or Gatorade after soccer. But, we’ve found safe and fun alternatives. She has an incredible network of people who love and support her. It takes more planning & time on my part but we make it work.