Major Symptoms of Celiac Disease and What You Can Do To Treat It

I remember the day that I got the call from Serena’s pediatrician saying that she tested positive the Celiac blood test panel. It was the day before Thanksgiving two years ago and we were elbow-deep in meal prep for the big dinner; my hands covered in ground meat as I was rolling meatballs. I rinsed and wiped my hands with a dish towel as my sister picked up the phone and held it to my ear.

“Hi, this is the nurse from Serena’s doctor’s office. I’m calling because we got the blood test results for her Celiac panel. She’s positive.”

“Wait, what? She’s what?”

“She’s positive. She has Celiac.”

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Enter the moment when I knew her life (and our lives) would change completely.

Will she ever be able to enjoy her birthday cake?
How can she go out to eat?
What will happen when she goes to school?
Thank goodness she won’t drink alcohol in college. HA.
Will her future partner support her lifestyle?
How can we make our house gluten free?

I took me a little while of reflecting back to all the symptoms and scenarios that made me think, “Oh, now this makes sense.”

5 Major Symptoms of Celiac Disease

Here are five major symptoms of Celiac Disease that we have experienced. Please be advised that I am not a medical professional and these are just our personal experiences.

Celiacs have chronic diarrhea or constipation

Don’t be mistaken, there are lots of people who have Celiac and don’t have this as a symptom. It’s very uncommon but it does happen. For Serena, though, it was not the case. She complained constantly that her stomach was hurting. She would either be constipated and backed up or pooping constantly. I remember one time where she just started at a new school and within the first week, I had to keep her home because she had diarrhea. It lasted for 14 days. Yes, you read that correctly, 14 whole days. The second time it happened, it took her to get a second opinion because I knew this was not normal.

Vomiting

Thinking back, the first time Serena ever threw up in her life was about an hour after she ate her first doughnut. That should have been a “Aha moment” for us but really, we chalked it off to just being an isolated situation. Even now, when she gets “glutened” accidentally, one of the earlier signs is when she throws up.

Many Celiacs have a poor appetite

I think this one is really hard to identify with toddlers. A lot of toddlers I know are picky eaters, but Serena was not like that. She was a great eater. She would eat without a TV or toys and distractions. I didn’t need to turn it into a game for her to eat. But then, suddenly, when she started getting the diarrhea that lasted for weeks, her appetite would just diminish. It would be such a battle. Her stomach is hurting, and we’re telling her to eat more food, but she’s not hungry because it’s gluten and messing up with her stomach! It was an awful cycle and in hindsight, we felt terrible for forcing her to finish her food; but we didn’t know any better. Now, if she or the boys don’t want to eat, we just let it be. No point in forcing them and ruining their mood (and our mood) and making them feel worse.

Muscle pain

For almost a year, Serena complained that her neck was hurting. It got to the point that we needed to get an MRI done because nothing we did at home to alleviate her pain would help. Sometimes, she would even tell me her legs or arms hurt right before bed. At the time, I thought she was just stalling bedtime; but in hindsight, I now know that it’s because she probably had whole wheat rotli for dinner and that she was starting to feel the effects of it right before bed. As I’ll go through below, irritation and brain fog are some of the first clues that she’s been “glutened.” Similarly, she will always complain of muscle pain so we know she’s somehow ingested gluten.

Failure to thrive: Irritation, Grain Brain, and/or Brain Fog

Serena is a typically a well-mannered and happy girl. I can count on one hand the number of times she has actually ever had a tantrum. But once she started complaining that her stomach was hurting and the whole saga of the constant diarrhea started, she was constantly irritated. And I don’t mean just like snapping like adults do when we’re hangry; I mean like the absolutely littlest things would set her O F F.

And she started this slow stutter. It was as if she could get the words down and it would stall out her communicating abilities. For us, this is the absolute first sign that she’s been accidentally “glutened” – her uncontrollable irritation and brain fog, or what’s commonly referred to as Grain Brain, the idea that grains and gluten are doing serious damage to the functions of the brain.

Again, I’m just a mom trying to figure out the signs I missed before my daughter was diagnosed with Celiac disease. I am not a physician and while I have consulted many different physicians, I do not pretend to be an expert on this topic.

If you think you or someone you know has Celiac disease, please consult with a physician. After blood tests, a biopsy has to be done to confirm the disease. Then, if it comes out positive, you need to meet with a nutritionist that specializes in Celiac disease.

Treatment for Celiac Disease

The only way to treat Celiac disease is lifestyle change. There is no cure, there are no allergy shots and no medicine. There is no magic medicine or drug you can take to take the pain away if you’ve accidentally “glutened” yourself. Staying hydrated and getting bed rest after taking a good probiotic seems to be the most helpful.

While this is heavily studied topic in the medical field with several articles posted in Medical Journals each year, it’s still all speculative. There might even be tests to see if certain medication can control the pain, but that’s all still experimental and hopeful at best.

For now, the only thing you can do is avoid gluten in all things in your life. Change the food you eat. Avoid cross-contamination. Change your soaps, your shampoos, and body wash. Eliminate toys and treats that have gluten in them from your home. Do not kiss anyone that has touched gluten. Do not share the same utensils, drinks, etc. Just being mindful of all these things has made a huge impact in her day-to-day life and ours.

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