Celiac Disease is No Joke!

In March of last year, 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 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 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, 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:

• Celiac Disease Symptoms, Testing & Diet | BeyondCeliac.org
• Celiac Disease Foundation

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. 

What Nobody Told Me

I often hear parents of newborns say, “It’ll be easier in a few months when they’re on a better sleeping and feeding schedule.” That never happens.

They often say, “It’ll be easier when they’re toddlers and can do more.” Yes, they can do a lot more, leaving you chasing them everywhere and tired for several years.

Then they say, “Oh, I can’t wait until they start school so I can take a break.” And then your baby goes to get out of the car on that 3^rd day and starts to cry, not wanting to go and have to leave you, yet again, for what feels like an eternity. You’ll cry, too.

Then it’s, “It’ll be so much easier when they can drive themselves to school and ball practice.” And then you worry yourself sick every time they get behind the wheel or ride with a friend.

During those tough teenage years, they say, “I can’t wait for them to grow up and start living their own lives.” Then, they do.

That’s the part no one warned me about! Letting go, for me, has 100% been the hardest part of being a parent. 

So, parents of small children…

Enjoy those dirty diapers, colicky nights, and tired days chasing a toddler after a night of no sleep. Appreciate the days when all they want is you… while you use the bathroom, take a shower, or try to sleep in peace. Relish in the moments when they climb into your lap or reach up to hold your hand when you’re busy or have your hands full.

Soon—way too soon—they grow up. 

We all know this happens and look forward to the day when our hard work and love have paid off. Even so, I never thought about the moment I’d actually have to let go and let them.

It’s like when they first start to walk and you keep a tight grip on their hands, just in case they fall, you’ll be able to catch them. Then it goes to one hand. Then they just hold onto a finger for balance. Once they get the hang of it, we have them let go so they’ll realize they can walk on their own. They’ll fall every now and again, but we help them up and send them on their way. All we can do is hope they watch where they're going and get back up when they fall.

Or the first time they want to go swimming. It’s so much easier to simply tell them no and not let them get in the pool than try to save them when they start to sink, but that’s part of growing up. They’ll never learn how to swim if they never get in.

And they’ll never learn to walk on their own if we don’t let go so they can.

(That’s what I keep telling myself, at least.)

Yes, I probably subconsciously wrote this post mainly for myself. Whatever works.
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Here's to letting go!