Celiac Disease is No Joke!

In March of 2022, my daughter was diagnosed with Celiac Disease. On one hand, we're thankful that's all it is and that as long as she doesn't eat OR get exposed to gluten at all for the rest of her entire life, she'll be okay. On the other hand, Celiac Disease is no joke!

It's not a simple food allergy. It's an autoimmune disease that can affect her entire system, not just her stomach, and it has. Looking back at the problems she started having in middle school, a lot of things make sense now. Is it all connected to Celiac? We'll never know. However, after doing a lot of research, I'd say it played a role in a lot of it. That's why I wanted to share our experience because, from what I've learned so far, this autoimmune disease affects everyone differently.

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, we were told 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. Now we know that 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 years, 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 sometimes. It's also something that, along with other psychological and neurological issues, can be associated with celiac.

Nausea, Vomiting, Pain, Diarrhea, & Weight Loss

The bottom fell out at the beginning of 2022. 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. She had to go on homebound and almost missed walking across the stage with her senior class. It got to the point that 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 (makeup, toothpaste, etc.) that contain gluten at all. None. Not a bite, drop, or even a crumb. If they do, it can trigger 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 learned this the hard way.

For Example...

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 that says their fries are GF 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...

A year after she was diagnosed, she still hadn't gained much weight back and was self-conscious about it, especially because most of her clothes didn't fit, and a lot of people who hadn't seen her in a while commented on how small she was. People who didn't even know her told her she needed to eat, which only made her insecurity worse. 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.

At one point during this journey, after cheating here and there, not monitoring cross-contamination possibilities, she was hospitalized for almost a week and was on the verge of kidney failure. While there, she was diagnosed with Superior mesenteric artery (SMA) syndrome. That shows how serious celiac disease can be and why avoiding ALL traces of gluten is essential.

Now, it's been years, and she's still learning. 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.

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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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