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5 Reasons Celiac Disease Is About More Than My Stomach

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When you look up “what is celiac disease” online or receive a celiac diagnosis, it may seem like a simple disease at first. In fact, when I’m explaining my condition to new friends, I often just say, “Celiac disease is an autoimmune condition in which ingesting gluten damages the intestines.”

However, in the seven years since my celiac diagnosis, I’ve realized something: the answer to “What is celiac disease?” can be pretty complicated…because celiac disease is about waaaaay more than just my intestines. Not sure what I mean? In honor of Celiac Awareness Month (and raising celiac awareness all year round!), here are five reasons celiac disease is about much more than my stomach.

1. The symptoms of celiac disease can manifest themselves in over 300 different ways.

It makes sense to think that a disease centered on intestinal damage would trigger symptoms related to digestion. And, in some cases, that assumption isn’t wrong: for instance, my main symptoms of undiagnosed celiac disease were acid reflux, nausea and rapid weight loss.

However, stomach problems aren’t the whole picture. In fact, symptoms of celiac disease can include:

  • Anemia
  • Anxiety
  • Infertility
  • Headaches or migraines
  • Fatigue
  • Discolored teeth
  • Thin bones or being prone to broken bones
  • Skin Rashes

and much, much more!

As a result, some people are diagnosed with celiac disease because they are underweight, bloated and have many stomach problems — but not everyone with celiac disease is thin or experiencing stomach issues.

Casey in a hospital bed.

2. The state of my stomach can drastically impact the state of my mind.

You’ve probably heard the old saying, “You can win a man’s heart through his stomach.” However, research has only recently discovered how much emotions are tied to the gut. This is called the brain-gut connection, and scientists have found that poor gut health can actually negatively impact people’s moods. For example, people with IBS and gut problems experience more anxiety and depression than expected on average, and an unhealthy gut has also been linked to conditions like chronic fatigue, ADHD, OCD and Tourette syndrome.

I’ve experienced first-hand how much my stomach problems and medically restricted diet can impact my mindset. When I’m going to a new restaurant with gluten-free options or trying a new gluten-free product that I’m still not sure will sit well on my stomach, I feel my heart rate increase and my hands start to get sweaty as anxious thoughts swirl through my mind. I think the isolation that can result from not being able to eat “normally” at college pizza parties or out with friends has also contributed to feelings of loneliness, and on days when I wake up randomly super bloated, I definitely have a harder time wearing a smile.

I don’t say all this for pity or to suggest that having celiac disease means that I’m constantly anxious, sad or lonely. As I’ve shared in many posts, you can absolutely thrive with celiac disease and I have not let my gluten-free diet hold me back from dating, going on outdoor adventures and eating at plenty of delicious restaurants. However, I do think it is important to make people aware of how much an “upset tummy” can really impact a person’s day!

3. Social isolation is one side effect of celiac disease doctors don’t warn you about.

Speaking of social isolation, a recent study found that food restrictions can contribute to people feeling more lonely or isolated, and I get that. As the study points out, people commonly bond over food and sharing a meal, and when you can’t do that, feeling like you belong can be a little bit more challenging.

At least in my experience, this is one side effect of the gluten-free diet (and life with celiac disease) that no doctor or nutritionist ever warned me about. After my celiac diagnosis, I was given advice on what foods to avoid and the best gluten-free brands to buy, but I had no guidance on how to maintain social ties while turning down most of the food ever offered to me.

Six years into having celiac disease, I have a well-stocked toolkit to help me survive any gluten-filled social event. I am open with friends about my dietary needs and am confident in turning down food with a short, “Thank you so much, but I have celiac disease so I can’t eat that.” And if someone does ask, “What is celiac disease?” in return, I feel confident enough to explain.

In the case of a social invitation where I know gluten-filled food will be involved, I typically:

  1. Eat before the event.
  2. Bring my own food.
  3. Call the restaurant (if applicable) to ask about gluten free options, and eat there if I can safely or follow step 1 or 2.

As it’s clear to see, celiac disease is about much more than my stomach — it also requires plenty of thinking ahead and the use of a well-experienced brain.

4. When I’m “glutened,” more than just my stomach can suffer.

Just like celiac disease has plenty of different symptoms, people with celiac disease also experience different side effects of being “glutened” (or exposed to gluten) after going gluten-free.

Personally, when I’m glutened, I typically don’t feel the effects for a few days. Then, all of a sudden, I’ll get extremely tired but also become unable to fall asleep, have massive brain fog and lose my appetite or have an upset stomach. It often takes me about a week to feel normal, and even longer to feel “good” (in terms of my stomach no longer being upset and having extra energy).

Beyond more expected side effects like vomiting or diarrhea, though, people with celiac disease can also experience gluten-triggered depression and fatigue, rashes, joint pain, migraines, blurry vision — I suppose you could say that no part of the body is safe.

5. Celiac disease has become a part of who I am, not just what my stomach is like.

But the biggest reason why celiac disease is about more than my stomach is simple: celiac disease is a part of all of me. As I’ve shared before, I don’t make my chronic illnesses my entire identity. However, I think it is impossible to ignore how much celiac disease has shaped who I am today.

Because of celiac disease, I am…

…a foodie and a big fan of experimenting with and trying new (gluten-free) foods.

…an even bigger lover of planning ahead and sticking to a routine.

…not afraid to stand up for myself or others with invisible and/or chronic illnesses.

And those traits are why, in some moments, I am happy that celiac disease affects more than just my stomach.

This post first appeared at Casey the College Celiac.

Getty image by Stephen Barnes.

Originally published: May 25, 2020
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