Here’s What It Means to Have Celiac Disease

Here’s what it means to be diagnosed with the autoimmune condition known as Celiac Disease. Including the definition, symptoms, causes, tips, & more!

May is Celiac Awareness Month so I wanted to do a post regarding what it means to actually have celiac disease, especially since I haven’t really talked about being celiac much at all here on the blog! I’ve definitely been sensitive to gluten my entire life, even when I was a baby, but didn’t get an official celiac diagnosis until after my Freshman year of college. I got extensive blood work done, for a myriad of issues, but one thing that did come back was that I was indeed celiac!

Before my diagnosis, I decided on my own, January of my freshman year, that I’d give a gluten free diet a try, because I was gaining weight & overall felt awful. For the most part, I did pretty well with sticking to it, but I was eating a ton of processed gluten free food items which wasn’t the best either. My options were good, but limited because I was played basketball in college so we were often traveling & there were times where gluten free options weren’t always available.

So fast forward to where I am now.

I’ve been strictly gluten free for years, but now I have a completely different approach then I did a few years ago. I don’t feed into the huge industry of gluten free processed food items that just throw a gluten free label on the item just to get you to purchase it. I focus on real, whole ingredients, & thankfully I’m able to make almost all of my meals, which allows me to get creative & control what I use in regards to putting together a gluten free meal.

Being gluten free or having celiac disease doesn’t have to be a chore. But it will take some research & knowledge on your end! Going gluten free is a lifestyle especially because gluten will be found in more places than just your pantry! Gluten can be lurking in your shampoo, foundation, lotions, soaps, & more! This is definitely something to be aware of because some people may even experience a reaction when they use or apply a product topically with gluten as an ingredient.

Over the years, I’ve learned so much.

The number one thing I’ve learned is that you have to be an advocate for yourself.

Celiac disease is an autoimmune condition & it needs to be taken seriously. It’s easy to control what you consume when you cook for yourself, but there’s a lot of people that don’t know what gluten even is, so it’s your responsibility to ask questions & stand your ground.

I can’t even count the amount of times where I’ve been to a restaurant where the waitress or waiter didn’t know what dishes had gluten in them or not. I think that’s a HUGE problem, but I’ll save my complaining for another day haha! It’s important to educate yourself so you’re able to vocalize your needs whenever you’re not eating at home. You need to get comfortable verbalizing that you do have an allergy & it should be treated as such. And I can’t say it enough – don’t be afraid to ask questions when ordering out! There are hidden ingredients in SO many things like burgers, sauces, dips, dressings, & breading that can easily be overlooked as a trigger for someone with celiac.

Cross-contamination is also a very real thing for people with celiac. Thankfully for me, my gluten allergy isn’t life or death but for others, it can definitely become more severe. Everyone has different reactions. I know what I can & can’t have & won’t settle for less, because I know I could potentially get sick for days if something were to go wrong.

Below, I wanted to share a little more regarding what it means to actually have celiac disease, the symptoms & signs of the autoimmune condition, the causes, what to do after a diagnosis, & my best advice regarding a gluten free lifestyle!

What is Celiac Disease?

Celiac disease is a chronic autoimmune disease. It occurs whenever your body has an immune reaction within the small intestine when any form of gluten is consumed. Some people experience a more severe reaction than others, but definitely a reaction none the less. If you have celiac, & you still continue to eat gluten, you’re subjecting the villi, the particles that line the small intestine, to damage, which then creates a difficult environment for the body to absorb nutrients.

There really isn’t a definite reason why someone gets celiac disease. The autoimmune condition can develop or become active after going through a childbirth, surgery, pregnancy, viral infection, or severe emotional stress.

If left untreated, similar to other auto-immune conditions, celiac disease can lead to more severe conditions such as malnutrition, loss of bone density, infertility, lactose intolerance, cancer, & even neurological problems.

What is Gluten?

Gluten is a protein found in wheat, barley, & rye. Gluten acts as a glue, keeping the food together without flaking or crumbling & is responsible for a chewy or doughy texture. Gluten is found in bread, baked goods, breading, soups, pasta, cereals, sauces, dressings, oats, beer, food coloring, grains such as farro, & more.

How do you know if you’re experiencing symptoms of Celiac Disease?

It’s crazy because not all symptoms or signs of celiac disease involve digestion. But I would definitely say digestion issues such as IBS, bloating, gas, uncomfortability, abdominal pain, nausea, constipation, & vomiting would be the most common symptoms.

Additional symptoms removed from digestion, would be anemia, loss of bone density, fatigue, headaches, joint pain, inflammation, acid reflux, heartburn, hyposplenism, rashes, or itchy skin.

Getting diagnosed with celiac disease can be tricky & you can only really be sure once you get a blood test.

You receive a Celiac diagnosis. What’s next?

Take a day to go through your pantry, your refrigerator, & your products. Gluten, I’m sure, will be lurking in places that you would have never guessed! And unfortunately this might be a little hard, because a lot of items won’t flat out say “wheat” on the label, so this is where education & learning comes in because there are a lot of additional forms of gluten that you will need to be aware of.

Reading the list of ingredients on the back of labels will definitely become your new hobby. Take your time, do your research, & read everything! If it doesn’t flat out say “gluten free”, you may have to do some digging!

Also known as gluten – Very Well Health

• Triticum vulgare (wheat)
• Triticale (cross between wheat and rye)
• Hordeum vulgare (barley)
• Secale cereale (rye)
• Triticum spelta (spelt, a form of wheat)

Ingredients that always contain gluten – Very Well Health

• Wheat protein/hydrolyzed wheat protein
• Bulgur (a form of wheat)
• Wheat starch/hydrolyzed wheat starch
• Wheat flour/bread flour/bleached flour
• Malt (made from barley)
• Couscous (made from wheat)
• Farina (made from wheat)
• Pasta (made from wheat unless otherwise indicated)
• Seitan (made from wheat gluten and commonly used in vegetarian meals)
• Wheat or barley grass (there may be cross contamination)
• Wheat germ oil or extract (there may be cross contamination)

Ingredients that may contain gluten – Very Well Health 

• Vegetable protein/hydrolyzed vegetable protein (can come from wheat, corn or soy)
• Modified starch/modified food starch (can come from several sources, including wheat)
• Natural flavor/natural flavoring (can come from barley)
• Artificial flavor/artificial flavoring (can come from barley)
• Caramel color (now considered a safe ingredient, but if you’re in doubt, check with the manufacturer)
• Modified food starch
• Hydrolyzed plant protein/HPP
• Hydrolyzed vegetable protein/HVP
• Seasonings
• Flavorings
• Vegetable starch
• Dextrin and Maltodextrin (both sometimes made from wheat)

Here’s my advice for anyone who is new to having Celiac Disease.

For someone to get a diagnosis of celiac, it can quickly become overwhelming. Especially if you don’t have any education or experience eating a gluten free diet. It takes 21 days for new habits to form, so my advice is to take it slow. You could definitely cut everything out cold-turkey, but I’m sure for someone who is used to a certain way of eating, this can be immensely difficult & you might find yourself “cheating”. So start slow, start eliminating things here & there, until you’ve covered all of your bases.

The first thing I’d recommend to cut out is definitely white bread. People quickly assume that going gluten free will be the end of enjoying bread, but that isn’t true! There are tons of great recipes for gluten free bread, as well as, a few good store bought brands! Another assumption about eating gluten free is that NOTHING tastes good or tastes the same. This is definitely not true. You will 100% learn to adapt to the taste of gluten free things & may even prefer new options over old favorites. I’ve been gluten free for a little over 5 years, which is crazy because I didn’t even realize it’s been that long, & I don’t miss anything I used to eat.

But to summarize…there are SO many options out there! You can basically find anything gluten free these days which is really encouraging!

Some Gluten-Free Recipes On My Blog:

• Coconut Flour Pancakes
• Healthy Banana Bread
• Triple Berry Cobbler
• Peanut Butter Granola
• Apple Crisp

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I hope this post was helpful for anyone who has been newly diagnosed with celiac disease or even for someone who might think they have it! Going gluten free doesn’t have to feel restrictive. You can still enjoy food, restaurants, & life, you just need to be your own advocate! Knowledge is power & we all have the ability to help our bodies no matter what we are dealing with!

Are you or anyone you know Celiac?