What I Wish I'd Known About Celiac Disease Before I Learned I Had It

Written by Celia Kaye

My nutritionist was out-of-shape and I immediately didn't trust her. She handed me a list of all my favorite foods under the heading "Forbidden."

As an Italian (and therefore, a pastavore), I wasn't sure how I'd stand a chance against Celiac Disease. I sadly envisioned my future without tiramisu or meatballs.

But I had paid $500 for the bloodwork, and $300 to see the nutritionist after the bloodwork came back positive, so I at least had to pay attention.

And when she showed me the sample list of gluten-free foods and their prices, I discovered that I had an expensive disease—the Prada of auto-immune disorders. I realized I'd have to become very rich to support these new lifestyle demands.

To make matters worse, three weeks before my diagnosis, I'd quit my full-time job (partly due to exhaustion) and had lost my medical benefits. Now I wondered if it was all related—had I been too fatigued to keep working because of my disease?

Between scowls, my questions began:

  • Just because my bloodwork came back positive, does that really mean I have Celiac Disease? Or am I just gluten-intolerant? Or do I have a wheat allergy?
  • Is fatigue a symptom of Celiac Disease, or was I feeling fatigued because I wasn't absorbing the right nutrients?
  • How will I face restaurants or street food? 
  • Is gluten-free food really the best solution?
  • Can I blame Celiac for my bipolar moods and compulsive hair-pulling? 

It seemed like my very unhealthy disease was about to spur me into a very healthy lifestyle. Since that initial day, I've learned a lot about Celia Disease, and have become familiar with common misconceptions about the disease. I've learned how eating wheat for a Celiac can be not only physically damaging, but mentally damaging, too. I hope this is helpful to you in your journey to wellness!

Here are 5 things I wish I'd known about Celiac Disease before I learned I had it: 

1. There's a difference between Celiac Disease and gluten intolerance. 

Skeptical Susie that I am, I had a hard time believing my diagnosis. Just because my bloodwork came back positive, did that really mean I had Celiac Disease? After all, I'd never experienced any discomfort after eating wheat treats.

Was I just gluten-intolerant? Or maybe I had a wheat allergy? Besides, how could I be genetically Italian and be predisposed to Celiac Disease?!

Turns out that Celiac Disease, unlike a food allergy or a gluten intolerance, is an inherited condition. When a genetically susceptible person eats a certain type of wheat protein (gliadin), the body's immune system starts attacking normal tissue. The condition does not improve once the gliadin is out of the person's system, and won't improve until it's removed from the person's diet.

The symptoms of an intolerance are similar, but they do not cause permanent damage to the GI tract. Symptoms will pass once the gluten is out of the person's system. People who are allergic to wheat may also experience reactions within the GI tract, but the branch of the immune system that is activated during an allergic reaction is different from the branch responsible for the autoimmune reactions of Celiac Disease.

For more information about gluten intolerance, wheat allergy, and Celiac disease, see American Celiac Disease Alliance.

2. If you're chronically exhausted or depressed, you might have Celiac Disease. 

If you've ever eaten Thanksgiving dinner and slipped into a food coma, then you'll understand how I felt on a daily basis. As a runner, my typical dinner was grilled-carbs-stuffed-with-carbs. Little did I know that every meal was a delectable little tranquilizer.

There is conflicting research out there regarding whether a wheat-eating Celiac will become fatigued due to the disease. From personal experience I can say this: Whether it was because I wasn't absorbing nutrients properly to give me energy, or because eating gluten makes someone with Celiac tired—I was chronically exhausted!

I'd sleep through weekends and wake up exhausted. But it wasn't only a physical problem. Going through the motions of depression started to make me feel depressed. Ever stand up straighter and feel better about yourself? Well the opposite is true, too. I lay prone to depression, too tired to get up, only dragging myself to work and back home so I could sleep again.

According to Celiac.com, women with celiac disease face a higher risk for depression than the general population, even once they have adopted a gluten-free diet.

Weeks after I took the grudging (and exhausting) leap into a gluten-free lifestyle, I started to notice a difference in my bedtime. My body didn't constantly feel like I was telling it to run a marathon at 3am on no sleep. Finally, my 23-year-old self could stay awake long enough to see 11pm. Months into "kicking the wheat," I even stayed up until 1am.

3. Street fairs are not the enemy. 

Once I had energy to do things, I did. I'd go out and stumble upon street fairs, where I used to sample anything that I'd never tried before. My first street fair as a Celiac was bound to be traumatic—limited to juiced beets and macaroons (naturally gluten-free!).

When I saw the crepe stand, I panicked: How could I resist? Its lithe tentacles of temptation lured me in. As I got closer and more rabid, my salivary glands eagerly preparing for a crepe-attack on my intestines, there it stood, pale chalk on the smudged board: "Gluten-free crepes available."

Imagine my joy!

Ecstatically munching on my gluten-free treat, I wandered through the rest of the stands. Gluten-free cornbread. Corn tortillas. Cookies for Celiacs. It was all there—hidden behind the real-people food, but there nonetheless (...And then it wasn't...because I bought it all.)

Yes, the gluten-free options sell out quickly, but once I wasn't feeling so tired, I could wake up early and head over to those street fairs before everything was gone!

4. A gluten-free diet gets rid of food cravings. 

Gluten-free options are glorious. But do they taste good? I am no fan of gluten-free bread, but I actually prefer gluten-free muffins and pasta. The bread tends to be dense and gluey, like day-old fudge brownies. My solution: Skip the bread entirely.

I eat cold cuts and veggie burgers (minus the bun), and fill up with veggies instead. Ultimately, I feel healthier not overloading on carbs at every meal, and instead eating more meat, fish, fruits, nuts, and vegetables.

After a few days of eating this way, I noticed that I didn't have food cravings, and wasn't feeling hungry during the day...That's probably because I'm constantly eating...I eat about six small meals throughout the day, and snack on fruits or vegetables nonstop.

Every so often I'll have plantain chips (ingredients: plantains and salt) if I want something crunchy for a change. Overall, my body feels happier, and if it tells me once a week it wants a wheatless muffin, or a Pasta Sunday, I'm happy to oblige!

5. Other areas of your life will improve by going gluten-free. 

In all, it took me about four months to establish a good food rhythm, and I felt more energetic and motivated. I discovered a series of fantastic restaurants, grocery stores, and products that are gluten-free.

While researching the relationship between Bipolar Disorder and Celiac Disease, I came across information about the relationship between Celiac Disease and Trichotillomania, or compulsive hair pulling.

What else can a gluten-free lifestyle improve?

I also discovered gluten free eye-shadow. (Who knew that existed?)

Sometimes women who have Celiac Disease get scaly spots around their eyes when they wear eyeshadow. My dermatologist told me that it was from stress...ZuZu eye shadow is gluten-free and vegan.

I've been using it for weeks now with no problems! I guess gluten-free and vegan is my cure for stress...

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