Imagine getting progressively sicker and doctors not knowing why. What starts with stomachaches turns into the difficulty to speak and inability to walk.

This was the life of Kiera Becker, a senior at Oakland University. It was many long months before she finally got the diagnosis: celiac disease.

What is it?

“Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine,” according to Celiac.org.

Gluten is a protein found in wheat, barley and rye. When someone with the disease ingests it, their body’s immune system mistakenly identifies the protein as a danger. However, instead of attacking the protein, the body targets the villi. These are tiny, finger-like projections that line the small intestine, according to Celiac.org.

“When the villi get damaged, nutrients cannot be absorbed properly into the body.”

Celiac disease is believed to affect one in 100 people around the world.

The battle for an answer

“I’ve kind of always been sick, even when I was first born,” Becker said.

When she was a couple of months old, a trip to the emergency room informed her family she had a low white blood cell count. Doctors believed it could be meningitis and she was therefore given heavy doses of antibiotics.

As it turns out, her test results had actually been switched with another patient’s. While her white blood cell count was low, she only ended up having a urinary tract infection. As autoimmune issues often begin with a trigger, the family believes this heavy dose of medication may have gotten the ball rolling.

Throughout her life, Becker would get throbbing headaches and excruciating stomach pain.

However, her condition worsened rapidly her freshman year of high school. She was often weak, had a hard time focusing in class and could barely stay awake.

One symptom of celiac disease is called brain fog. This makes thoughts foggy, and so it took a long time for Becker to verbally reply.

Eventually, she even lost the ability to walk on her own.

“I was basically close to a vegetative state. I was still conscious but wasn’t very responsive,” she said.

During this time, Becker saw many specialists who tossed around different possibilities. For instance, one doctor thought she was depressed and prescribed anti-depressants. At the time, her family was mainly focusing on the neurological side, or the possibilities that dealt with the brain.

Looking back, Becker said her lowest point was during a visit with her primary care doctor, whom the family had seen for years.

“She basically said ‘You might just have to be like this,’” Becker said. “I can’t believe someone whose job it is to try to help sick people just gave up on us.”

While she was used to seeing doctors most of her life, it eventually began to take its toll.

“It got a little sad after a while. You keep seeing doctors who just tell you the results are negative.”

Light at the end of the tunnel

After months of struggling, Becker’s family decided they would take a break and go see a friendly face, their pediatric gastroenterologist Dr. Belknap.

“He came into the room, looked at me and said, ‘She has celiac disease,’” Becker said.

Although he had given her tests when she was younger, celiac disease was not well understood in the U.S. around the late 1990s, so the diagnosis was dismissed. However, as time went on, Belknap contacted European colleagues and continued to study celiac’s causes and markers, so he became very familiar with all of its symptoms.

He immediately ordered another endoscopy, during which a camera is used to look at a person’s digestive tract, according to WebMD.

“They put the scope down and found that all of my villa were completely wiped out,” Becker said. “Because of that, I wasn’t getting any nutrition.”

She was then put on a gluten-free diet, and the process of recovery began.

While the diagnosis was a little hard to hear, it also came with some relief.

“You just want a name to what’s going on. It’s not curable, but it was just so nice to know that it’s not going to be like this forever, I just have to stay off gluten,” Becker said.

Road to recovery

At first, things were pretty rough.

“I slowly started to realize how many things have gluten,” Becker said.

The first Thanksgiving was the worst.

“I sat down and it was like, so, I can have mashed potatoes.”

Starting out, her family sat down and learned how to read labels, as it’s important to decipher what the words mean. Becker gave the example of malt flour, which is actually made from barley. Therefore, she can’t eat things like Whoppers candies.

As for eating out at restaurants, she’s gotten the hang of researching the food beforehand, although the trip can sometimes prove difficult. She must always be aware of the potential for cross-contamination.

“The most painful thing is when they advertise having a gluten-free menu and you’re all excited, but when you go, all that’s on it is salad. It’s like no, I wanted food.”

Becker said it’s gotten easier, as more people are now eating gluten-free, despite no actual rise in celiac disease.

A study published this year found that between 2009 and 2014, the number of non-celiac people who avoid gluten has more than tripled, according to The Guardian. This may be because of the diet’s trendiness.

Some use it as a weight-loss diet, which Becker said is very inaccurate.

“A lot of bread substitutes have more sugar in them to compensate for the flavor, so they can be unhealthier,” Becker said.

While finding the fad a little annoying, Becker said it does have some benefits.

“On one half, they’re getting into it for their own reasons, but on the other half, I’m getting more food to eat.”

Becker was officially deemed healed two years later.

A serious disease

Becker is not alone with her struggle.

Celiac disease can have over 200 symptoms, and many people show little-to-no signs, so a diagnosis can be challenging, according to Celiac.org.

In fact, it’s believed that two and a half million Americans have the disease but don’t know it, which can cause long-term health problems, according to celiac.org.

Becker said she was fortunate to have caught the disease in a couple of months.

“Mine was the worst case [Belknap] had ever seen,” Becker said. “I was very lucky. I’ve known people who have gone through that for years without getting diagnosed.”

Becker made it clear that this disease can be dangerous.

“It’s not the end of the world, but it is still very serious. If you find out you have that diagnosis, you must stay gluten-free or you will get very sick and maybe even die.”

Becker said she knows people who should be gluten-free but cheat because their symptoms aren’t as extreme. However, they may not realize the damage that’s happening to their body. This may cause an increased risk of other problems.

Studies have been done that lead scientists to believe those with celiac disease have a higher probability of getting certain types of cancer, according to GlutenFreeLiving.com. However, it is rare and the risk declines when the body begins healing.

Therefore, Becker said it doesn’t hurt to be proactive.

“If you get the opportunity to get tested, do it. Sometimes the symptom might be as simple as being tired all the time.”

All in all, there were some takeaways from this journey.

Through this experience, Becker learned how compassionate and unified her community can be, from gluten-free food fairs to websites where people can swap recipes.

“In being in this gluten-free community, I met people I never would have otherwise. They’re almost like a family. Even in the harshest situations, you can find someone who’s going through the same thing and really support each other through it.”