Family Story: Taylor Miller, Gluten Away
Speaking Up for the Health of Our Families
3 years ago, when I was 13 years old, all I really cared about was hanging out with friends, playing sports and just doing the things any normal teenager would do. At that age I didn’t want to worry about how I felt each day. From 6th-8th grade, though, I knew I couldn’t deny there was something wrong with me anymore. I had many gastrointestinal problems, migraines, extreme fatigue and constant pains whenever I ate any type of food. For a while I went on without really mentioning these things to my parents because I’m not really one to complain. These feelings just started to become a normal, everyday thing for me. But it wasn’t until I started mentioning the small things each day to my mom that she told me this wasn’t normal. I think a lot of kids (especially teenagers) may be feeling a lot of these typical symptoms each day but may not be speaking up about it. I truly am thankful that I started telling my mom about my symptoms. If I hadn’t, I may have gone even longer without getting diagnosed with celiac disease. That’s why I think it’s so important for parents to ask their kids every once in a while if there is anything out of the ordinary with how he/she feels each day. I know I didn’t see how bad I was until my mom helped me realize it.
There is so much being done now to raise awareness for celiac disease among families, from social media, to new gluten-free products, or even just by word of mouth. Sometimes, I feel like the most important type of awareness is from a family member. My diagnosis didn’t just come along from luck; I went through over 3 years of misdiagnosis by doctors only to figure out I had celiac disease on my own. My mom was diagnosed with celiac disease in 2010, only a few months before I did. She dealt with many serious symptoms for over 25 years and we quickly realized I was having the same issues. I researched and learned that if a parent does have celiac disease, then the child’s risk for developing the autoimmune disease increases to a 1 in 22 chance. That’s why it’s very important to get your kids or any other close blood relatives tested for celiac disease because it really could save their life.
I know all families are different and handle situations in their own way, but one thing almost every newly diagnosed person deals with is trying to cope with explaining it to their family. Some families can be very understanding and some families may not get it at all. I was fortunate to have a family that understood what I was dealing with, but it took some time (my grandma still doesn’t understand cross-contamination). When you get diagnosed, it doesn’t just come with a change of food, it comes with a change of your entire lifestyle. It’s unrealistic to expect your family to understand every single thing you’re dealing with, but slowly teaching them about the gluten-free diet is something you can do. I always just explain the basic foods I can’t have and why, but not in too much detail. Dropping a bomb of information about villi and the genetic make-up of gluten will probably not get you too far. Just explaining plain and simple the foods you can and can’t have is how I always start out. Some people get it, some don’t, but it’s a start.
While explaining celiac disease to your family can be tough, convincing them to get tested can be ever harder. Many people automatically assume the gluten-free diet is a death sentence, but really, I think it’s a blessing in disguise. Once you know the cause of your symptoms, you can start eating food that makes you feel good. Unfortunately, a lot of people just don’t see it that way. If you absolutely know that a family member is dealing with a lot of celiac symptoms, be honest and tell them you felt the same way. Let them know how a celiac diagnosis changed your life. Some people may be stubborn about getting tested, but it’s important for us to at least try. My aunt has many celiac disease symptoms and instead of saying, “I think you have celiac disease, you need to get tested,” I pose it as more of a suggestion by saying, “Maybe getting tested for celiac disease wouldn’t be a bad thing to try.”
Each person’s family, life and experience with celiac disease are different, but that doesn’t mean we can’t find a way to be at peace with it. I’ll admit, celiac disease does make life much harder compared to most people, but there are things you can do to make the most of it. The most important part about getting diagnosed is that no matter how your family handles it, you can know you finally found a way for you to feel better and healthy.
– Taylor Miller