Joint Pain
Around sixth grade, my daughter started complaining that her knees hurt when she bent down and that her ankles sometimes caused her pain when she walked. After talking to her pediatrician about her discomfort, she said to keep an eye on it. If it worsened or continued, she said she'd run some tests to detect inflammation issues, but it would always come and go and never kept her from doing anything, so no testing was done. An underlying symptom of Celiac is inflammation.
Spondylolysis
Since seventh grade, she played both school and club volleyball. She was a hitter and also loved to dive when necessary to save the ball. During her sophomore year, she suffered from stress fractures through the pars interarticularis of the lumbar vertebrae, which is a mouthful to say. The simple term she was diagnosed with is spondylolysis. Whatever you want to call it, she hurt. At night, especially after practice or games, she'd cry because the pain was so bad. Even though she's not played in a year, she still has back pain.
After doing research, I realized that a complication with untreated celiac disease is the inability of children to develop optimal bone mass, which puts them at risk of having low bone mineral density (BMD), osteopenia, and osteoporosis-related fractures.
Anxiety
During her junior year, anxiety hit. My daughter, who'd always been happy and outgoing, started having anxiety attacks and had to take anxiety medicine just so she could walk into school. We assumed the change was because everyone had been forced to stay home so long due to Covid and that returning to normal life had triggered something in her. I talked to her guidance counselor, so she'd know what was going on, and we all did our best to help her manage it. Having social anxiety, myself, I completely understood what she was going through. I'd had it since I could remember, though, so it was odd that hers showed up so suddenly. It embarrassed her because she had no idea when it would hit or when she'd start crying, which would also randomly happen, and she couldn't control it. Sadly, that still happens. It's also something that, along with other psychological and neurological issues, can be associated with celiac.
Nausea, Vomiting, Pain, Diarrhea, & Weight Loss
The beginning of last year is when the bottom fell out. January, right when the second semester of her senior year was starting, my daughter started waking up every single morning at around 4:00 a.m. nauseous, sweating, and in the bathroom throwing up. She was incapacitated all morning and wasn't able to function until about lunchtime when the pain and nausea would ease up. This continued for almost three long and agonizing months. It got to the point she dreaded going to sleep at night because she knew what would happen as soon as she woke up. At one point, she even puked a little blood, which the E.R. doctor said was just irritation from her esophagus where she'd thrown up so much. Regardless of the cause, it was all very scary.
It was also relentless. Every. Single. Day. She cried. I cried. It sucked and my heart broke for her because I couldn't make it stop or make her feel better. Neither could her doctor. She gave her acid reflux and nausea medications, which didn't work, and referred us to a gastroenterologist, who increased her acid reflux medicine. When that, too, didn't work, she was scheduled for an endoscopy... on the same day as her eighteenth birthday.
After being sick for months, losing thirty pounds (when she was already thin), and having depression on top of her anxiety, the testing showed she had Celiac Disease.
We were thankful and relieved to know what was wrong, but also sad to realize she had a disease that would alter her life forever. Even so, it's manageable. No gluten. We could handle that. Not comfortably or with ease, but together. It was going to be okay.
No gluten means NO gluten!
People with Celiac Disease can't eat gluten or use products (lotions, toothpaste, etc.) that contain gluten at all. None. Not a bite, drop, or even a crumb. If they do, it can set off their immune system and cause damage to the small intestine, whether or not they experience symptoms. Over time, this can cause anemia, a higher risk for infertility and certain types of cancer, diabetes, multiple sclerosis, osteoporosis, heart disease, liver failure, and many neurological symptoms. Sadly, she's learning this the hard way.
Most fries are naturally gluten-free, however, some fast-food restaurants cook theirs in oil that is cross-contaminated with foods that contain gluten, meaning theirs cannot be considered gluten-free. Simply eating three fries from a restaurant caused her to have an attack that sent her to the E.R. in extreme pain, vomiting, and with brain fog, which scared her. After being put on fluids for a few hours and given pain meds, she felt better, but it was very eye-opening. She can never assume something is gluten-free or that it's not exposed to it if she's unsure. Just because most fries are okay to eat doesn't mean they all are. And if pizza is supposed to be gluten-free, yet it's made on the same line as regular pizza, guess what? It's not 100% gluten-free.
Where we are now...
It's been a year since she was diagnosed and we're still learning. She's not gained much weight back and is self-conscious about it, especially because most of her clothes don't fit, and a lot of people who haven't seen her in a while comment on how small she is, now. People who don't even know her tell her she needs to eat. Yes, she knows this. I guess people don't realize that telling someone they're too skinny and need to eat can be just as hurtful as telling someone they're fat.
It's just going to take time to get back to normal and adjust to a new diet, but she's learning. We all are. As long as she's careful it'll be okay. Thankfully, she has a great support system of both family and friends who help her and encourage her along the way, as well as a new Gastroenterologist. Having a great doctor on your side is just as important. If you're not happy with yours, don't settle.
For more information, visit the following websites:
Helpful downloads:
- The Gluten Free Scanner on the App Store (apple.com)
- The Gluten Free Scanner - Apps on Google Play
- Find Me Gluten Free - Apps on Google Play
Disclaimer:I'm not a doctor or celiac disease expert; I'm simply the mother of a celiac. This has been our experience and I wanted to share it to raise awareness and possibly help someone else who is sick and grasping for answers.
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