High School Volleyball: How a diagnosis changed Vanguard setter Sophie Reed's life

Vanguard volleyball standout Sophie Reed has accomplished a lot on the court as a four-year starter for one of the top high school programs in Marion County.

In each of those years the Knights have made deep runs in the playoffs. Heading into Saturday night's region semifinal match at Choctawhatchee, Reed is 34 assists away from the 2,000 career mark.

She's done even better off the court, taking Honors classes and IB courses. She's a National Merit Scholar semifinalist and will play volleyball at Amherst.

But Reed also has been battling an unknown enemy since she was 12 - an undiagnosed stomach condition - but never letting it stop her from making her dreams a reality.

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After Reed started experiencing sharp stomach pains, she was told there could be several problems. One doctor said it might be ulcers. Another said it could be acid reflux, functional stomach pain, or stress.

"I didn't feel stressed. I loved the challenge of school," Reed said. "I loved volleyball. I love all these things, and they just told me to cut them all out. It didn't really make sense to me because that wasn't what I was feeling."

Sophie battled the stomach pains for five years without an official answer. The Reed family tried everything to help their daughter - overhauling her diet to bread, water, and vegetables; reducing her stress. She'd go through different regiments that helped for a short time but wouldn't give her long-term relief.

"I tried mediation and all those types of things. It didn't work because I didn't feel stressed," she said. "I loved the hard test and the close matches. Those things made me excited. They didn't make me stressed."

Stress, however, affected her family. Sophie's parents were questioning how in tune they were with their daughter.

"She's telling us she doesn't seem stressed, but what are we missing here? I think we were all kind of unsure about what it was," said Sophie's mom, Amanda Reed. "It was a weird ride."

The early days of stomach pain

It was hard for Sophie to describe what she was feeling when the flare-ups started. A debilitating stomach pain put her in the emergency room. The doctor gave her a concoction used for patients with ulcers.

Sophie described the early onset of an attack as "the rise," referring to an acid reflux incident that persisted.

"The problem is she started limiting her life. She started cutting food," Amanda said. "To the point, she was scared to eat anything with flavor, anything that was spicy. Fried food. Then a nutritionist said, 'don't eat anything with baking soda,' so we cut all that out."

The change resulted in her eating more bagels, crackers and plain pasta. All are gluten-rich foods. Sophie's new diet was making things worse.

She even had to give up her favorite candy, Twizzlers. The red licorice's second ingredient is wheat flour.

"It's been tough. I tried the non-wheat alternatives, but they're just no good," Sophie said. "But I have found a love for peanut butter cups, so we're OK. But Twizzlers, they will be missed."

The flare-ups usually came 2 to 6 hours after gluten exposure. The next day, she would be tired, experience joint pain, have a headache and stomach pains. She described the pain as ulcer-like. On the third day, she experienced fatigue. By the fourth day, she was fine.

"I get dizzy, too. That's when volleyball gets a little tough in those ranges right there," she said. "You're trying to find the ball while spinning around the room. It doesn't work well."

She's dealt with acid reflux every match over the last five years. Amanda could see it on Sophie's face when she played.

"When she went up to jump serve, you could just tell she felt terrible out there. I could tell when she was going downhill fast," her mom said.

Sophie remembers there being a savior in those moments. It was bread. Then, the cycle would start again.

"Every single game I've played in, I've felt terrible. In every single one of them. That's why I always chew gum," Sophie said.

Extra Polarized gum is her go-to. The mint flavor helped to settle her stomach a bit.

She had to chug Mylanta on the sideline of a game this season. It's not her favorite volleyball memory.

"It was hard to watch. I asked her, 'Do you want to keep doing this?' " Amanda said. "You could never tell. She would always play her hardest."

Sophie was mad when her mom asked. So much of her life was tied to the sport, and she loved the game.

"It sucks that I feel this way playing it, but it's just so much fun. All my friends are from the sport," she said. "It's a part of me now. I credit volleyball so much of what I am today. So seeing that stop being a part of my life was just kind of crazy."

The start of a volleyball career

Sophie was 14 around the time volleyball started to click. She credits former Ocala Power United coach Tito Martinez for bringing out her drive.

"I was so quiet. I was the kid that I would never speak up until my14s season," she said.

She hit a 9-inch growth spurt during the eighth grade. It changed the game for the skinny kid who started the year at 5 foot.

"Once you get taller, the game gets more fun. You can do more things," Sophie said.

She knew she was good when defending state champion Vanguard asked her to start her first year at the high school.

At Vanguard, she'd set for hitters who would go on to play college volleyball, win player of the year awards, play at a high level.

She accepted the challenge of becoming the starting setter. Sophie credits Kyndall Kalb and Alexa Schmidt as positive influences in her first varsity season.

"It's been so fun to watch her play. I watched her go from pretty timid, shy, and reserved to someone's who's out on the court rallying the troops." Amanda said.

The Reeds finally get some answers

Sophie wouldn't let her illness stop her from playing. Despite a limited diet and pain through the last five years, she never missed a game. She often opted to play through her ailment even when you could see it was affecting her on the court.

However, Sophie would miss her first game during her senior year.

She was in the emergency room the night before the match. She didn't feel well enough to play until an hour and a half before play started. Amanda took Sophie to Gainesville High School to join the team. On the way, they stopped at Starbucks for a bagel.

She started warming up on the court and felt terrible.

"I felt like I couldn't move. Felt so tired, so worn out," Sophie said. "My stomach hurt terribly."

Two days later, she was admitted to the hospital and underwent an endoscopy. She missed the next six matches during the Nike Tournament of Champions.

During the two-day hospital stay, the five-year mystery was finally solved. The diagnosis was celiac disease, an autoimmune disease that causes a reaction to gluten and certain protein found within wheat, barley, and rye.

Sophie had to stay in the hospital another day for testing and monitoring.

"I was like, 'oh, this sucks.' This is terrible. They think I have celiac disease. I still have this stupid probe down my throat," she said.

The diagnosis changed Sophie's and the family's life immediately. They could finally game plan for the pain that had plagued her from the early teens.

The day she was released from the hospital, the family went grocery shopping for gluten-free foods. Sophie grabbed chocolate. She could finally eat it again.

The family also adjusted.

"Our whole family has gone gluten-free. It's too stressful. I want to know that if she grabs something, it's safe," Amanda explained.

It's a big change for the Reeds, who now call themselves the Gluten Factory.

Sophie is now off gluten and doing a lot better.

Amanda was thankful for the diagnosis.

"She went through so much and she kept playing through it. A gluten-free diet is no skin off her back. I'm OK; the cards have already been dealt," Amanda said. "But back when she was 12 and I would have told her to cut gluten, I think the response would have been different. I wish we would have known sooner."

Sophie questioned what her future would look like before the diagnosis. It even reached a point where she rethought her plans to go to Amherst.

"I didn't have the energy to do anything. I felt down and didn't really want to play or do anything that would make me feel bad," ahe said. "So I started thinking can I manage this away from home? Can I play volleyball at a high level without being able to fuel myself properly?"

The diagnosis lifted those weights off her shoulder. What she thought would hamper the next steps of her life and playing career finally had a solution.

Two days after not eating gluten, Sophie, her family, and her team noticed a difference. She had an energy they hadn't seen in a while.

"I felt like I was in a better place,' Sophie said. "I would get joint pain all the time and think I hurt myself because I was always feeling this pain. Well I cut out gluten and haven't had joint pain since then."

Amanda recognized how down Sophie had been and how much better she was within days.

"It was astounding. She just seemed so happy and excited about life again, and that's always how she's been. I don't think we truly appreciated how bad things had gotten." .

Friends, coaches, and teammates take notice

Sophie's played for Ocala Power United since she was 10. That's where club director Jeff Reavis first met the talented setter.

"When she was 13 or 14, she was probably 100 pounds soaking wet. But she was a worker," Reavis said.

Sophie worked on her game on and off the court. Between working out with fellow setter Amelia Fitzpatrick and watching film at home, she got better. She'd ask questions and put what she watched on her own into practice.

"She probably is technically the best setter to come out of Ocala," Reavis said.

Reavis doesn't say this lightly. He's coached for 30 years, 20 at the college level and the last 10 at the club and high school levels.

Reavis didn't notice signs of Sophie's ailment until her freshman year. Before that, he knew something was bothering her, but her toughness outweighed the effects.

"Back then, it was what she couldn't eat. She was literally eating turkey on bread," he said.

It only got worse as time passed. She wasn't getting the fuel needed to take care of her growing athleticism and skillset.

"Every time she was getting sick," said Vanguard head coach Luis Perez. "She played or practiced until she couldn't anymore. She never gave up the easy way."

Perez had known Sophie since she entered the Ocala United program. He's has coached her during her high school years. He knew she was in pain..

Reavis was relieved to hear the diagnosis.

"It was wearing on her not knowing. No one could tell her what's wrong. As a kid, that's tough," Reavis said.

Some traditions have changed with Sophie's high school volleyball team. Before games, they'd all go to Panera Bread. They've switched to Publix.

Sophie and her family are still hesitant about eating out. Cross-contamination happens too often when serving food to the masses. It's hard for some restaurants to guarantee a gluten-free meal.

During her trip to Amherst, she tried several restaurants. The first was gluten free. The second had a strict gluten protocol. The third restaurant didn't. Sophie had to fly back to Florida amid a flare-up.

Armed with knowledge about Celiac Disease

Sophie was learning about celiac disease in IB biology. She sees the irony. She gave presentations to the class, knowing more about it than her teacher .

Amanda took her own crash course.

"We're so fortunate with all these options. I couldn't imagine doing this 20 years ago," Amanda said. "But now the gluten-free options are pretty incredible. It's been manageable."

With knowledge under her belt, Sophie may have another gear. Her diet has given her more energy and she can feel it on the court.

"I won't feel winded after three sets. So I'll be able to play five sets to the best of my ability," she said. "I feel like I'm jumping higher but I don't know if I am."

She's finally strong enough to use all the skills she's learned over her career.

She's also a leader among her club and high school teams. It's a drastic difference from when she started the sport.

"She understands the game. The way she sees it she could be a coach," Reavis said. "She coaches our young ones. She sees the game the way you'd like a player to see it and understands what the other team is trying to do to you, then makes adjustments."

Reavis knows how important Sophie has been over the years. When she leaves for Amherst, there will be a tough void to fill.

"She has been going through something. Most people, unless they know her pretty well, don't know that," he said. "I'm just proud of her. I've been blessed enough to have her around me. Making me a better person and a better coach."

Sophie and representatives at Amherst have already talked about her diagnosis. The team has a player with gluten intolerance on the roster. The coaches have reached out to her to ensure that future team dinners will fit her diet. Sophie and her future teammate have talked about food options around campus.

An Amherst nutritionist walked Sophie through their gluten-free options on campus. They have a gluten-free fridge, a salad bar with no wheat products, and gluten-free restaurants 15 minutes from campus.

There are even talks of Sophie receiving a single room to avoid possible contamination from a roommate.

Before Sophie graduates from high school, she'll get an allergy amulet or Nima sensor. It'll allow her to test food for gluten in real-time.

"I'm really excited for my club season and being able to play that and the state series healthy. Obliviously, going to Amherst, that's going to be so much fun," Sophie said. "Being able to try the foods I couldn't eat for a long time. Maybe gluten-free options of them. Actually, bringing flavor into my life is going to be fun."

Now she knows how to keep those ailments at bay. With her diagnosis and new eating habits, she can avoid them before they start.

And continue to play great volleyball but without pain.

This article originally appeared on Ocala Star-Banner: Vanguard volleyball Sophie Reed excels despite Celiac Disease diagnosis