Frustrations of a Celiac

Posted On Monday, 04 November 2013
Frustrations of a Celiac
Why is it that more places are offering gluten-free foods, but are recommending that people with celiac disease shouldn't eat there?

Doesn't that defeat the purpose?

It's been two years since my diagnoses of celiac disease. At first, I would overdramatize how much my life was ruined and that food would no longer mean the same. I recently became excited to hear of all the great options that were open to me. Little did I know, what restaurants really meant was their gluten free option is only for those who are going through yet another diet fad, not those who truly need it.

I've always had digestive problems, but thought it was just stress, or IBS. It seemed normal to me (and I as I type this I realize how this sounds) to throw up, have diarrhea, and get horrible abdominal pains, and constantly feel bloated immediately after eating.

I had just transferred to DePaul University in the fall of 2011, and was just getting used to living back on a college campus again. This was when I began noticing more and more issues with my gut. However, I ignored these symptoms and just thought I was stressed from school, as I tend to be during the quick ten-week quarter system DePaul has.

A few nights a week I would be up all night, death gripping the sides of my toilet while everything poured out of my mouth. My roommates would joke with me and say, "You're sick all the time. Maybe you have the gluten thing." Laughing, thinking that was not even possible, I ignored them and continued doing absolutely nothing about addressing the problem.

As time progressed, it started to become a hassle to eat. After every meal I would feel exhausted from throwing up, from the horrible pains I felt and all I wanted to do was lay down. Date nights I had with my boyfriend turned embarrassing, for I would need to quickly excuse myself to spend what seemed an eternity in the ladies room.

I remember we were eating Subway for a quick lunch, and as soon as we walked outside the door, I couldn't help but throw up in the entranceway, and needed to rush home, to spend another night in the bathroom. My boyfriend would express his concern, urging me to see my doctor, but I would say it wasn't a big deal and that I knew my body better than anyone, right?

It was the middle of a spring afternoon and the pain in my gut had gotten so bad that I couldn't get out of bed. I couldn't keep anything down, not even Gatorade, which I have grown to only drink to help restore some electrolytes in my body. My feces were black, and my skin-color a ghostly white. The only time that my body was able to move was when I needed to throw up, which at this point was the bile in my stomach.

Crying, I called my dad and told him that I needed to go to the hospital.

My weight loss became apparent to me as soon as I saw the look on my parents face. Layered in baggy sweats, I was at a gangly 110 pounds. Lacking in energy due to malnutrition, I was now desperate to figure out what was happening. My body stopped producing periods, and all I wanted to do was sleep.

My blood results came back and tested positive for celiac disease and I needed to see a Gastrologist immediately.

I was in shock. I have WHAT? How can this be?

After spending what seemed like a job interview with the gastrologist about my gut and noticeable issues, he wanted to test my blood again to see if the numbers were still high. If they were, the only way to determine celiac is through a biopsy.

My blood work came back with high levels in my EMA-IgA and I needed to go have an Upper GI, where the surgeons take pieces of small intestine and stomach and biopsy them to determine celiac. With no surprise, I tested positive after the biopsy. My life was going to change, and I had no idea how to react.

No more deep dish pizzas, no more beer (which is still the biggest loss I have never come back from since my diagnosis), no more of my mom's delicious Thanksgiving dinners, my grandma's homemade biscuits and gravy, friend chicken, or pies. My favorite Portillo's chocolate birthday cake was out of the question. My boyfriend comes from a Sicilian background, where the family dinners include multiple, homemade finger licking good pasta dishes. I'm not going to be able to eat anything ever again! Why is this happening to me?!

One night, I found myself staring at my family with envy as they devoured my ultimate favorite homemade Pork dish with Spätzle noodles, while I was eating a plain salad and shouted without hesitation, MUST BE NICE!!

After feeling down for a couple of weeks, I realized I needed to educate myself on other food options.

Slowly my weight returned, I began to learn how to cook gluten-free, and spent all my money (if you've spent any money on gluten-free items you know they aren't cheap!) at Whole Foods, and Trader Joes on the gluten free essentials I needed in order to feel normal again.

The bread isn't great, but at least it's bread I would tell myself after making a PB&J. Of course it was going to taste different, I have been eating the same bread my whole life. At first, I wanted to try everything that was gluten free and wouldn't care what the calories were or how expensive the item was.

While reading, which is now my favorite book, Born to Run, I found a quote true to what was happening at my current state of Debbie downer syndrome. In the book it says, "The only way to truly conquer something, as any great philosopher and geneticist will tell you, is to love it."

I realize there is no cure to celiac, and I don't know if I will ever fully love it, but I don't need to pout anymore. I need to be positive and make the best of it and conquer this mentally. I also wanted to educate myself on my disease, so I would never have to go through that hell ever again.

Celiac disease is an autoimmune digestive disease that damages the small intestine and interferes with absorption of nutrients. Basically my body was attacking itself every time I ingested gluten (the protein found in wheat, barley and rye). What I also discovered was that gluten wasn't just in baked foods, but certain sauces (soy, cocktail), vitamin supplements, shampoo, cosmetics, salad dressings, lotions, literally everything and anything. I bet people avoiding gluten for dietary reasons didn't know that, or stop using those items for their new trend diet.

That's another thing, I began noticing people choosing to go gluten free for their own benefit. Only 1 in 100 people have celiac...so why would anyone in their right mind give up something they didn't have to?

I was running in my favorite race in Chicago, the Shamrock Shuffle this past year, but noticed that after I crossed the finish line, the only thing in the recovery bag I could eat was the banana. I overheard some older women talking and one woman said, "Oh, I can't have this stuff, I am on that gluten-free thing". Overly excited that I could relate to someone, I butted into the conversation and immediately regretted it. I began explaining how I couldn't either because I have celiac disease. The woman who said she was gluten-free paused, looked at me with a confused face, and said, "What's that?"

"What do you mean what is that? Isn't that the reason you can't have the granola bars?" I began saying.

The woman again looked at me puzzled and said, "I just eat it because it's healthier".

I lost my mind.

So, if a celebrity comes out and says she is gluten-free and says it's much healthier everyone believes it? No one researches anything for themselves anymore? I don't know if I should laugh or be somewhat offended.

Since my diagnosis I am amazed at all the options that are available to my celiac family and me. It has been beneficial since this new trend has made its appearance. Now Jewel Osco and Dominick's have their own specialty aisles dedicated to those who need gluten free food. It also though has become a nuisance.

Recently, articles have been posted about the differences between celiac disease, gluten sensitivity and all the in-betweens. I get if you have headaches, or cutting gluten out of your diet because of IBS or other indigestive issues. I will never understand why people think it's healthier for them.

Here's an example: Country Life Bakery 100% gluten-free bread, serving size of two slices totals in at 190 calories, 312 mg of sodium, 6g of fat and only 3g of fiber, 5g of protein. Glow gluten-free gingersnap cookies, serving size of two cookies totals in 220 calories, 12g fat (5g saturated).

Still think it's healthier?

In an article done by KLS, Sara Fausett, a dietician and nutritionist at the Biggest Loser Resort at Fitness Ridge in Ivins says, "The gluten-free market makes a lot of money," "Wheat has so many benefits, fibers, calcium, iron which are so important to your overall health in the body that if you don't have celiac, you're really restricting a lot of variety in your diet, a lot of good food options, and you're restricting the nutrients going in."

Repeated studies have shown over and over again that if you don't have celiac disease, there really is no benefit that you're gaining eliminating gluten. Wheat helps maintain a healthy weight, reduces risk of heart disease, diabetes and stroke.

What other people don't know is that by eliminating an ingredient, gluten, food manufactures have to use more fat and sugar to help bind the food and keep it from crumbling. (As you can see from my examples above).

Living in Chicago I have seen the growing rate of restaurants becoming gluten aware. It used to tickle me, and I would give silent sarcastic thanks to all these people who made this trend happen! However, as I have found (the hard way) even though restaurants claim they are gluten-free, they really aren't.

I'm not expecting that I won't have some sort of run in with cross contamination, or demanding that restaurants educate themselves on the differences of celiac and gluten free dieting, but it would be nice to eat out at a place that says they're gluten-free, without getting sick.

The issue that most people don't understand is I if I eat something that is contaminated, I don't just throw up once. I throw up until it's completely out of my system. It takes weeks for my small intestine to repair itself again. My appetite becomes weak, I am constantly fatigued, bloated and throw up continuously, even when I am eating gluten-free foods. It doesn't matter; my body is trying to repair the damage that has taken place.

My recent run in with a gluten-free place was Jason's Deli. I heard through my boyfriend's Nana that they now offer gluten-free bread, and knowing there is one down the street from my apartment I couldn't wait to try it out. Upon my arrival, I noticed a sign below their menu that read,

"We cannot recommend the persons with Celiac Disease. Our gluten-free offerings are designed for those with minor gluten sensitivities or those who prefer to avoid gluten for nutritional reasons"

Are you kidding me? (Steam blowing out of my ears)

It was once a fantasy of mine that I was going to create a restaurant that was just strictly gluten free and no one would be allowed in except my fellow celiacs'...I realized how childish that sounded and have just made a conscious decision to avoid going out all together instead.

It sucks, but playing Russian roulette every time I go out - am I going to get sick this time? Let's pull the trigger - It's not a risk that I am willing to take anymore, and it's a waste of my money.

For me, gluten is evil and will always remain an enemy. Celiac awareness has rapidly grown, which I can give a shoutout to the trendsetters for, but ultimately, just because a place says gluten-free, 98 percent of the time, they're not.

Lauren Allen

Lauren just completed her undergrad with a double major in communication media studies and journalism. She plans to continue her education at DePaul University, working towards a masters degree in journalism. Lauren is extremely passionate about learning new ways to maintain a healthy lifestyle with food, fitness and wellness.

Comments

You May Also Like . . .

newsletter-signup-small
Signup to our free newsletter!
Daily Health Tips, important audio, videos, articles, blogs and more - and Prizes, too!
 
To view current and past newsletters please click here.

More From Topic:
Healthy Living

FREE RadioMD Newsletter: