"Quiet! Be still!"

October 2016

Mark 4:35-41:

 That day when evening came, He said to His disciples, “Let us go over to the other side.” Leaving the crowd behind, they took Him along, just as He was, in the boat. There were also other boats with Him. A furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. The disciples woke Him and said to Him, “Teacher, don’t you care if we drown?”

He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.

He said to his disciples, “Why are you so afraid? Do you still have no faith?”

 They were terrified and asked each other, “Who is this? Even the wind and the waves obey Him!”

Junior Year
First off, I don't know how I'm a junior. After this semester, I only have three semesters of my college education left. Yes, that is absolutely terrifying and kind of exciting. I've been spending the first nine weeks of this semester thinking about and processing everything that has happened since I came to college. There's been a lot of pain, confusion, hurt, and sorrow. I was distressed over thinking about what my memories of college will be when I leave in May, 2018. Would I be able to think about the laughs, great opportunities, amazing friends, and fun experiences? Or would I only be able to focus on the negative things that were said, the friends who walked away, the dark days, the endless anxiety, all the panic attacks, and the pain from other people's sins? After the first week of classes, I came to a very heartbreaking and troubling conclusion: a terrible sin had been committed against me freshman year. Realizing thing led me down a dark path of depression, fear, panic, shame and doubt that rocked and shattered my world. How could a God who loved me enough to die for me cause something horrible to happen to me? As I cried out to God, He seemed very distant. I asked Him for guidance and for even a small sign that He was still with me, but all I heard was nothing. This made me seriously question my faith. I didn't take comfort in reading the Bible or listening to Christian music. I found myself feeling angry towards God and resenting Him like I never had before. This caused even more panic and confusion. Did I still believe in God? Was He still involved in my life?

Two of my sweet connection group friends

Thankfully, I have an army of friends who know and love Jesus more than anyone else. They were able to encourage me, pray for me, and remind me of God's truths and promises. I am involved in the Salt Company through my university. Salt is a very large (we're talking almost 2,000 students) Christian ministry. It meets on Thursday and then there are smaller groups (called connection groups) that meet in dorms/apartments on campus and off campus. Sophomore year, I was involved in two different connection groups that just weren't the right fit for me. I wasn't able to truly share my struggles with my mental and physical health without feeling judged and unsupported. So obviously, I was very hesitant to join a connection group this year. I told one of my dear friends about my worries, and she recommended a group that meets at the on campus apartments. I didn't really want to go, but I knew falling away from Christian community would make my life even more miserable. As it turns out, this connection group is literally sent from God. I've only known the 10 or so girls involved in the group for nine weeks, but I feel so supported and loved by them. I have shared about my struggle with doubting in God and those struggles were met with pure love, support, and encouragement. Having a loving and stable environment to go to every Monday evening has helped me so much! Another part of the Salt Company, is the famous Fall Retreat at a campground. This year's retreat was my first time going. Again, I didn't really want to go, but felt I should. I get very anxious and overwhelmed in large crowds so I was worried about that (since 900 students attend this retreat!), and I would be away from my emotional support animal Roger all day. The retreat brought in a speaker and there was four sessions over the weekend. During a very loud and rowdy game of volleyball, I got super overwhelmed and needed to find a quiet place. So I found a place under a big tree and started reading the passage from the morning's session on fear. The passage came from Mark 4:35-41. The story of Jesus calming the storm is very familiar to me; I only learned it 400 times in Sunday school. While reading through it, I began to see a lot of similarities between this iconic story and my own story.

Jesus' and His disciples were in the middle of a storm (called a squall in this passage) in the middle of the ocean. I can only imagine there was lots of lightening, thunder, rain, and huge waves. I think we can all agree that they were probably very scared. After all, this storm could potentially kill them. So where was Jesus? He was sleeping on a cushion. His disciples were confused; how could Jesus be sound asleep when everyone was about to drown?! So they take Jesus up, asking Him if He cares if they drown. Jesus then tells the storms to be "quiet! Be still!" and the storm obeys. Then Jesus asks His disciples why they are so afraid and asks if they still don't have faith? The disciples are in shock that even winds and waves obey Jesus. I am definitely in the middle of a storm. For me, the storm isn't thunder, lightening, rain, and wind. It's fear, hopelessness, doubt, anxiety, confusion, guilt, and anger. For eight weeks, I felt like God was sleeping. I didn't feel any connection to Him or comfort from Him, and that terrified me. Just like the disciples, I questioned my fate and God's plan for my life. Was He just going to let me "drown" in the storm?

"Quiet! Be still!"

Right after I discovered the connection

this passage and my own story

All Jesus has to do is tell the storm to stop. When He asks His disciples why they were so afraid, He also asks if they still don't have faith. The word "still" really stuck out to me. I've been through a lot: six years of managing seven chronic physical conditions and three mental conditions, I almost lost my grandpa three years ago, family conflict, friends leaving me, and the challenges that have come with going to college. But guess what? I'm still here. God has brought me through all of that and more. So why am I doubting Him? If God can get me through all of that, what was making me think He couldn't bring me through this?

"Even the winds and waves obey Him."

Water is the most powerful force on earth. Jesus is so powerful that He can calm waves in the midst of a storm! Spend a few minutes and try to wrap your mind around that. The point is, if He can calm the most powerful force on earth, surely He can calm the storm that is raging inside of me.

After reading this passage and reflecting on how it applies to me, I was filled with unexplainable hope and confidence in God. I felt like the thing that I had been missing for the first eight weeks of school was finally returned to me. Throughout the rest of the retreat and on my drive back to school that night, I couldn't stop smiling...even though half the time I was crying because I'm just an emotional soul who cries at pretty much anything. I can't express enough how impactful the Fall Retreat and my experiences within the Salt Company have been for me. God is absolutely working wonders through all of this, and I'm eternally thankful.

At the Salt Company Fall Retreat with my connection group

Final Post: Acceptance

Epilogue

I officially "called it" on Labor Day of 2013. I had a lot of manage, but the key was that I could manage all the medicines and diets. I no longer struggled daily with that horrid gastritis pain. Once I felt 100% better, my last year of high school began to fly by. The math class at the community college presented its challenges, but it was a great way to prepare me for college academics. In October of 2013, my mom and I were the (very proud!) co-coordinators of Making Tracks for Celiacs: Des Moines--the first ever celiac disease awareness walk in Des Moines. After months of planning, the walk was a huge success! My mom and I were interviewed in the Des Moines Register and KCCI Channel 8 broadcast live from the walk and interviewed me. Over $4,000 was raised and 150 people participated. It was a dream come true! The year of 2013 ended and 2014 began. This was going to be a big year for me: I would graduate high school and go to college. I was very thankful when I finished high school for several reasons. First, I made it a whole year of high school without something medically bad happening.
 Freshman year: mono, c.diff, and celiac disease.
 Sophomore year: surgery, Iowa City, hospitalized, IBS, and gastroparesis
Junior year: gastritis
Understandably, I was quite intimidated by what could possibly happen during my senior year! Thankfully, nothing happened. I was proud of myself for finishing high school on time and with good grades.

Where Am I Now?

These days, I am feeling great! I will occasionally have a day where I do everything I'm supposed to, but I just don't feel good. That comes with having four chronic digestive disorders. However, I would say that I feel well 95% of the time! My diet is still restricted but much less than what it used to be. I currently avoid gluten, dairy, meat, bananas, coconut, tomatoes, and onions. As for medicines, I still take amitriptyline and prescription prevacid. I have completely weaned myself off of cholestryamine because it was making my stomach hurt after I took it. Not living with all the nasty side effects has greatly improved my quality of life! I also take a vitamin, probiotic, Miralax, and peppermint oil capsules.
 I can run anywhere between three to four miles three times a week, and I still enjoy it just as much as I did when I started. To date, I have participated in seven 5k races.
 This summer, I am working (still at the daycare!) and running a lot. I recently returned from a trip to Texas to visit my cousin and her incredible family. My cousin has her own health issues and has been a constant source of friendship at support! I will turn 19 next Sunday, and shortly after that I will embark on my latest adventure: college. I will be attending Iowa State University for dietetics. I plan on becoming a pediatric clinical dietitian after I graduate. Just the thought of having the opportunity to help kids who are sick and in hospitals fills me with joy. Going to college is a big step for me, and I would be lying if I said that I wasn't nervous. In addition to managing everything that is college, I will be bringing along my restricted diet, medicines, and health problems. I believe that God will give me the strength to manage all of this, just like He has given me strength to manage chronic illness at a young age.

Final Glances

Before I publish this last post, there are a few more things I want to say. My health journey was unexpected, chronic, complicated, and rough. At the same time, there are so many blessings that have come from it.
My faith: this is something that has definitely increased since I got sick. I have a small notebook filled with encouraging verses from the Bible that I read every day when I was sick. It was amazing to experience the amount of peace and comfort I got from these verses. Multiple times one of these verses would "randomly" pop into my head in a time that I needed to hear something encouraging, comforting, or reassuring. I have now personally seen how God works "all things for the good of those who love Him" and that He does have a plan for us. God has placed incredible people in my life, and it's amazing to think about how His plan has played out through all sorts of people. All of the blessings/lessons I've learned listed below would never have occurred if I hadn't gotten sick. Yes, living with all that I have and experiencing everything that I've been through was not pleasant. Do I wish it would have never happened? No. If I could go back in time and magically prevent all of this from happening, I wouldn't! As I mentioned above, I want to be a dietitian. I would never in a million years have decided on that career choice if I hadn't been sick enough to require a dietitian's help. I would have probably ended up as a speech language pathologist or a personal trainer, but I am SO excited for my future as a dietitian! I love how I can finally see a little bit of God's great plan for me.
My family: I have formed very close relationships with my family, especially my mom and grandparents, during my health journey. My mom was (and still is) my constant source of support. If I don't feel good or something isn't going right, she is the first person I turn to. She can always cheer
me up and make me feel better. I'm so thankful for the memories, both good and bad, that we've gone made and the experiences that we've gone through together. I know that I wouldn't have made it out of my health crisis without her! My grandparents have also been so supportive. It started with them baking me gluten-free treats and making family gatherings "Sarah Safe". Since then, my grandpa and I text each other every night and we all enjoy being together. Both of my grandparents are inspirations to me; they've been through so much but yet they are the kindest people I know. I've also deeply bonded with my precious cat, Oliver. He's always been my baby, but when I got sick he became even closer to me. He always comforted me when I was upset by purring, rubbing his face against my hand, and rolling around on the floor to make me laugh. He even kneads his paws on my stomach when I don't feel good! I have also developed close relationships with two of my cousins, Lisa and Leda. We don't live close, but we are certainly close at heart! All three of my dad's siblings have also showed so much care and concern through my health journey. I never felt like I was going through this alone; I could always feel the support and prayers that were coming from my spread-across-the-country family!

My friends: When my health reached the point where I was always canceling plans with friends because I didn't feel good, only two of my friends stuck by my side. Elizabeth and T. Both of them always asked how I was feeling and were very sensitive to my health. They didn't seem to mind if I canceled existing plans because a doctor appointment or test came up. I've been friends with Elizabeth since I was in kindergarten, and T. and I have been friends since first or second grade. Both of them have secured a place in my wedding :P The family that I babysat for have also proved to me huge blessings. Those kiddos were the perfect distraction for me when I needed one. Erika, their amazing mother, always filled me with hope and encouragement when I was sick.
My doctors and medical team: I talk a lot in my blog about my doctors, nurses, and other medical professionals I've interacted with. I think if I would have been younger or older, the medical staff I had wouldn't have mattered as much. However, I was at such a vulnerable age: 15-18 years old. I spent more time in waiting rooms and with the doctor than I did at friends' houses. Therefore, my nurses and doctors became my friends. I now consider them family. Each doctor has made a difference in my life and for that I will be forever thankful. Of course, there's always that doctor. Even though Dr. Satan did absolutely nothing to improve my quality of life, he did teach me things. He taught me to appreciate the good doctors. He taught me to advocate for myself, even if the "doctor" didn't believe a word I said. He taught me how to stand tall and strong in the midst of a raging storm. This doesn't mean that I speak well of him because I had to learn all of these things thanks to him. When I look back at my time with him, it doesn't go well for me. I know he has affected other patients in a similar way. There are days when I want to report him to the Iowa Board of Medicine or blackmail him, but then I remind myself of two things my mom told me: "God will take care of people like him" and "The best revenge is you feeling better because of doctors in Des Moines."
 My mom and I regularly get together with Nurse T. for lunch or walks. She is such a good friend and an inspiration. My friendship with Nurse T. is the perfect example of one of the greatest blessings that has come from my health journey.

Facts and Figures:  My mom finds these figured depressing, but I find them interesting and somewhat amusing. From 2010-2013, I visited the hospital 105 times. I had five ultrasounds, seven x-rays, three endoscopies, two colonoscopies, one surgery, and nine nuclear medicine tests. I saw 15 doctors from 11 different specialties.
Thank YOU: When I started this blog, I didn't know if it would be successful. I figured the only people who would read it would be my family and friends. As of today, however, over 3,800 people in 12 different countries have read this blog! Thank you for showing interest in my blog. As I'm about to mention, writing this blog has been crucial for me to move forward from my health journey.
Things I've Learned: I have learned that nothing tastes as good as feeling good, sometimes all you need to do is read a Harry Potter book, it's okay to cry, peppermint does wonders on a troubled tummy, never tell a sick person how terrible they look, understanding the family tree of the British Monarchy is a great distraction, cats provide great comfort, some GI doctors look up so many buttholes that they become one, not every doctor will be as great as mine so I thank God for my doctors, coffee is a laxative, gluten can be hidden in anything and everything, people will say stupid stuff because they are ignorant, a walk around the lake can mentally transform a person, and everyone has a story, baggage, and pains that they will always carry with them.

When a traumatic event happens, there are five stages of mourning: shock, denial, anger, depression, and acceptance. As I look back on my health journey, I can clearly see the times when I went through these stages. I can also see when I went through these stages after I felt better. The psychological recovery after the physical recovery of chronic illness is just as important. It took me a while to learn how to function without feeling sick. After I discovered this, I had a hard time accepting and moving on from my recently won battle. When I started this blog, I just wanted to share my story and maybe help some people. I had no idea that writing my health story would be such a cleansing process. I had to dig down deep and re-live the past few years. This was not easy to do, but after I published each post, I had this wonderful feeling of peace. Yes, bad things have happened to me but it's okay. I survived, I am alive, and I am thriving. I am living the life that I dreamed about when I was sick; I can run, work, and do what I want to do. I'm even going to college soon! I will never be able to forget everything that has happened to me, but I've come to the point where I don't dwell on what has happened. I'm a total sentimentalist so my health journey will always be in my heart. I am not the same person that I was before I got sick, and I would like to think that my health journey has made me a better person. I'm so thankful that I started this blog as it has given me the final stage of the grieving process: acceptance.

After
August 2014

"I have fought the good fight; I have finished the race; I have kept the faith." -2nd Timothy 4:7



Before
August 2010



 

 

 

THE END!!!!!!!!!

 

P.S. If you would take a few minutes to give me some feedback, that would be fantastic! Please leave a comment below with how you discovered my blog, what made you read it, and your thoughts, comments, or questions. Thank you!! :)

Gluten: Public Enemy #1

May 2011

I tried to stay as busy as possible on May 1, the day before my endoscopy. I tried to immerse myself in projects, but I was always thinking about what was going to happen the next day. Not only was I scared of the procedure, but I was also scared of what the results would say. I realized that gluten was in everything! In addition to my scope, Oliver (my cat) would be getting his haircut the same day. Oliver's twice-a-year haircuts are a traumatic experience for both him and me. Oliver really hates riding in the car, especially to the vet where his long beautiful hair is pretty much shaved completely off. I hate haircut days because I don't like taking Oliver to the "bad place". In fact, I had to stop going in to the vet's office to drop him off because I would cause too much of a scene. I love my furry baby! Not only was I upset about having an endoscopy, I was also upset about not being able to comfort Oliver on the way to the "bad place".
 I had decided that I would take refuge in my ultimate escape: Harry Potter. I started reading the first book (for the third time) on the night before my scope. I was drawn away to the Dursleys, Harry's cupboard under the stairs, and owls bringing letters from Hogwarts.

The Scope:
 May 2 came sooner than I would have liked. I didn't have to be at the hospital until 10:00 a.m. so I spent some of the morning doing school. Rachel told me that people do better on tests if their hair looks nice so she curled my hair that morning. After Rachel left for work, my mom and I left to pick up my dad and go to the hospital. I tried to push the feeling of dread away by reading Harry Potter, but that feeling only increased the closer we got to the hospital. The scope was taking place at the same hospital where I used to volunteer. I prayed that I wouldn't come in contact with any of the people I worked with. Once we arrived, we went to the outpatient procedure area to get checked in. Here I learned the official title for endoscopy: esophagogastroduodenoscopy. WOW! After waiting in the waiting room for a while, a nurse called me back. She went over how the procedure would work: I would have two different types of medicine (midazolam and demerol) put in to an IV that would make me sleepy. I would then be positioned on my left side for the procedure. A mouthpiece would be inserted in my mouth and the flexible endoscope would go into my mouth, down my esophagus, into my stomach, and finally down into the duodenum, the first part of the small intestine. Small biopsies would be taken as well. These biopsies would be sent to a lab for testing. The nurse told us that celiac disease is found in the duodenum so more biopsies might be taken from there. The whole procedure would only take about ten minutes. When she asked if we had any questions, I voiced my main concern. A friend of mine had an endoscopy and woke up in the middle of it. I obviously did not want that to happen to me. The nurse assured me that waking up during the procedure was very rare, and that Dr. D.S. knew what he was doing. The nurse then gave us some paperwork to look over and sign. One sheet of paper included the risks of the procedure. I stopped reading them when I saw that one of the risks was the endoscope poking through my esophagus, stomach, or duodenum...but that was rare! I felt like I was signing my life and well being away as I signed some patient consent paper.
"Now...have you met Dr. D.S.?" The nurse asked with a foreboding tone.
"Yeah, I met him on Friday." I answered.
"Okay, good. He is a character; we never know what's going to come out of his mouth!" The nurse said with a laugh. I liked her.
The nurse told me that sometimes kids my age cry for no reason after waking up from the scopes, and that it was usually a side effect of the medicine. Then it was time to get ready for the scope. I had to change into one of those infamous hospital gowns. It was floral and as ugly as sin. I was relieved that I could leave my Victoria's Secret PINK sweatpants on and my famous green hospital shoes. The shoes are high-tops, green, and have purple and yellow locks printed on them. I usually wore them to the hospital for appointments and tests, and I received compliments every time I wore them.
The nurse situated me on a gurney and told me that I might have to wait for a little bit. I was in a large room that had sections blocked off by curtains. There was a nurses' station and a hallway leading off to the procedure area. I didn't have to wait very long before the nurse came back and told me that they were ready for me.
"The scariest part of the day will be me trying to push this thing around." The nurse said as she unlocked the gurney and started to wheel me toward the hallway. "Just remember to keep all hands and feet inside the ride at all times!"
My mom followed us into a very small room. The nurse locked the gurney and introduced me to the other nurses in the room. They were all so sweet and had a motherly feel to them. One of them informed me that they all had daughters at home so I would be taken care of. One of the nurses placed heart monitors on my chest and started an IV in my right hand. For some weird reason, I still have the mark from the IV on my hand to this day. Shortly after the IV was started the door opened and in walked Dr. D.S. He looked even smaller than he did on Friday in his hospital scrubs. He greeted me with a fist bump and asked if I was nervous. When I replied that I was, he said, "That's okay..I am too."
One of the nurses quickly interjected that he was kidding. Dr. D.S. ran through the procedure again and then started to put the medicine in my IV. While putting two very powerful medicines into my body, Dr. D.S. told me a story about how he went to buy his mom a Mother's Day present over the weekend, and he didn't realize that some assembly was required for this present that he bought his mom. I was sort of paying attention, but I was also preparing myself for the sleepy feeling. I don't remember how the story ended, but I remember a nurse telling me to roll on to my left side. I made it halfway there before I really started to feel sleepy. A nurse helped me move completely on my left side, and a large and hard pillow was placed behind me to keep me from rolling back over. That was the last thing I remembered, but my mom says that I said goodbye to her. My mom was worried about my heart racing too fast because I was nervous. Dr. D.S. told her that there was something in the medicine that would calm me down, and he was right. My mom could actually see my heart rate slowing down on the monitors as the medicine began to kick in. After I was completely asleep, my mom joined my dad in the waiting room.
 15 minutes later, Dr. D.S. went to the waiting room to get my parents. He showed them pictures of my insides ("I know you'll recognize her as soon as you see her!" Dr. D.S. cracked) and said that he took 12 biopsies instead of four. Meanwhile, I was waking up in the procedure room. Everything was blurry. I remember asking the nurse if it was over, and I cried a little bit. One of the nurses kindly used a Kleenex to wipe my tears away and started to wheel me back to the recovery room.
"Where's my mom? I want to see my mom?" I mumbled through tears. I remember turning a corner and seeing a big smile light up my mom's face.

My not-so-furry baby

As soon as I saw my mom I asked, "Has the vet called? Is Oliver okay?" I have no memory of saying this, but my mom says that I was very concerned about Oliver getting his hair cut that day. My mom reassured me that Oliver was fine, and I slept for about two hours straight. I woke up occasionally, and I was very confused. I kept asking about Oliver. I also asked where Daniel and Rachel were. I remember thinking that it was very important to list all the continents. I listed North America, South America, and Africa before falling asleep again. After two hours of recovering, a nurse woke me up to tell me it was time to get ready to go home. My mom was going to bring the car to a special entrance while a male nurse wheeled me out in a wheelchair. As we headed past the nurses' station, a nurse gave me a kind smile and waved goodbye. My male nurse and I rode in an elevator and made out way to the entrance where my mom had the car parked. I don't remember the ride home, but I remember waking into the kitchen of our house. Rachel was standing there holding a squirming and hairless cat. Oliver is very jumpy and angry after he gets his haircut. He has so much fur that he usually loses 1 1/2 pounds when all his hair his shaved off. My mom helped me walk into the living room where Rachel had positioned my pillow, my stuffed Hedwig owl, and my Hogwarts pillow on the couch. I laid down and fell in and out of sleep for the rest of the day. When I woke up, I was still confused about where I was and what had just happened me. There was one thing, however, that I was not confused about: my kitty knew that I needed some extra comfort that day. Instead of hiding like he always does when he gets a haircut, Oliver was sitting on the floor right by the couch every time I woke up. I love my fur baby!

May 3: The Call that Changed Everything
I was back to normal the day after my endoscopy. My throat and esophagus were a little tender, but other than that I was fine. My always faithful friends, Elizabeth and T, were relived to hear that I had survived. The worst was behind me; now I just had to wait three days until the results came. I did a little bit of school and went shopping for my flower garden. A friend had invited us to a mother-daughter banquet at her church that evening.
As the afternoon drew to a close, I began to feel kind of tired. I laid on the couch and played on my iPod while my mom talked to a friend from church. In the middle of her conversation, my mom's cell phone rang. She shot me a look of panic and asked her friend to hang on a minute. It couldn't be Dr. D.S. with the results from the endoscopy. Today was Tuesday, and the results weren't supposed to be back until Thursday. As much as I tried, I could not fight the feeling of dread and panic that I was experiencing as I tried to focus on my game. My mom came back into the living room and told her friend that she would call her back later. After hanging up the phone, my mom turned to me.
"That was Dr. D.S. You do have celiac disease."
I froze in a moment of stunned shock. I dropped my iPod as I started to shake. I felt like I couldn't breathe
"It's...it's not Thursday." I gasped as I tried to catch my breath. "No. No! I don't want it!"
My mom gave me a hug as the tears came. Rachel rushed into the room, and my mom told her the news. I still couldn't believe it. No more wheat. No more Brugger's Bagels, no more Papa Murphy's pizza, no more anything that contained wheat. I couldn't even wrap my mind around the concept. As I sat on the couch in denial and shock, I wasn't even aware of my surroundings until I heard a purring sound. Oliver had jumped up on my lap and was purring. Do not even tell me that cats aren't smart! The only noise in the room was Oliver's purring. My dad came home from work to find everybody in the living room, probably looking like somebody had died. My mom told him that I had celiac disease. He fell silent and left the room. The next 30 or so minutes consisted of my mom calling my grandpa and wondering what we should do about the banquet.
"What if they serve spaghetti and garlic bread?!" My mom worried.
"Wait...I have to start this right now?" I asked. I didn't think about starting the wheat-free diet as soon as I was diagnosed. I didn't even have a chance to eat my favorite foods one last time. 
 We thought about not going to the banquet, but we didn't want to disappoint our friend. I still couldn't believe it. Rachel tried to distract me by looking up gluten-free candy on Google. We also watched a little bit of "The Young Victoria". Nothing could keep me from thinking about my future. What was I supposed to eat?

No gluten? No problem?

 I put on a brave face and went to the mother-daughter banquet. Thankfully, spaghetti and garlic bread was not on the menu. Instead it was a pork chop, green beans, and potatoes au gratin. I've always loved potatoes so I was looking forward to eating the cheesy potatoes...until my mom told me that the sauce was probably thickened with wheat. My mom and Rachel joined me in avoiding the potatoes and cake for dessert. The banquet was fun; I won a door prize, and professional dancers came in and taught everybody how to hula dance. Even though it was fun, I just wanted to cry and my mom told me later that she wanted to throw up. When we got home from the banquet, there was a pleasant surprise waiting for me in the kitchen: my dad went to Hy-Vee and bought a cart full of gluten-free foods! Pizza crust mixes, cookie mixes, brownie mixes, chips, ice cream cones, frozen pizza, flour mixes, crackers, cereal, bread, and pasta filled the kitchen counters and freezer! As I munched on an ice cream cone that tasted just like regular ice cream cones, I thought that this might actually be possible.

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Celiac (seal-e-yack) disease is an autoimmune (meaning the immune system is attacking itself) disorder. There are over 300 symptoms for celiac disease. Individuals with celiac disease cannot tolerate anything containing gluten. Gluten is the protein in wheat, rye, barley, and malt. Approximately 1 in 133 people have celiac disease. In celiac patients, gluten knocks down the villi in the small intestine that absorb all the calories and nutrients from food. The only treatment for celiac disease is a gluten-free diet for life. If not treated, celiac disease can lead to cancers and infertility. 

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Saying Goodbye to the Grain:

A picture says 1,000 words!

This is disgusting. I thought as I gagged down a piece of gluten-free toast for breakfast. It was May 4, and this was my first day of being on a completely gluten-free diet. The toast tasted like cardboard. While I was still in shock and denial, my mom had jumped immediately to acceptance. She ordered every single book about celiac disease the library had, and she had scheduled three appointments with dietitians. We were meeting with one dietitian today. As we waited to meet with the first dietitian, I though about becoming a dietitian myself. If I was going to have to eat this way for the rest of my life, I might as well help other people who have to eat gluten-free also. The dietitian was very nice. She gave us a lot of handouts about everything gluten-free: a celiac support group who had gluten-free potlucks four times a year, restaurants that offer a gluten-free menu, recipes, and information about something called "cross contamination". After learning about cross contamination, I realized that this was not going to be easy. I had to have a new toaster so no crumbs from gluten containing products would get on my gluten-free food. There could be no sharing of condiments or any other food item that could pick up crumbs of gluten. My mom and I also met with the dietitian at our local Hy-Vee. She showed us around the store and told us about her favorite products. Right after I was diagnosed, my mom and I purged the kitchen of all wheat. It was exhausting. We literally checked the label on every single food item we had in the kitchen. We had to get rid of about 50% of our food. We tackled each section of the kitchen separately and layed out all the food on the floor. Wheat was hidden in the most unbelievable places! Twizzlers, Andy's Mints, and soy sauce were on the top of the shocker-list. My mom also cleaned the whole refrigerator while everything was out. We gave most of the food that I couldn't eat away to my aunt, grandparents, Erika, and other people who could eat it. It was bittersweet. Bitter, because I would never get to taste real cheesecake, Twizzlers, or any of my other favorite foods. Sweet, because everybody said that I would start feeling better in 4-6 weeks.  I finished my first year of high school shortly after I was diagnosed. My dad's brother from California also paid us a visit right after I was diagnosed. We took Uncle Tom to see the tulips in Pella and other Iowa attractions. Uncle Tom had always made me laugh harder than most people. It felt so great to laugh again; it seemed like it had been a while since I actually laughed. 

Tulip time with Uncle Tom

Rockin' the purple skinny jeans at camp

 Eight days after I went gluten-free, my family and I took our annual camping trip. This year, we were armed with gluten-free hot dog and hamburger buns and graham crackers for s'mores. Maybe this wasn't going to be so bad. There seemed to be a ton of gluten-free options on the market. I had great support from my family, especially my cousin Leda. We only met once at the wedding back in August, but we were friends on Facebook. I knew that she was gluten-free so I sent her a message. Her messages back were filled with advice, knowledge, suggestions, and encouragement. She said that she "loved" the gluten-free diet. She also recommended a good magazine, Living Without, that had a lot of gluten-free tips and recipes. Leda taught us that some beauty products contain wheat and all envelope seals contain wheat. My friends Elizabeth and T. were also very supportive. Elizabeth has family members that are gluten-free so it was no big deal that I was also. However, not all my friends were as supportive as Elizabeth. Shortly after I was diagnosed, a friend invited me to go shopping. She was going to eat lunch out so I packed a gluten-free lunch. Out of all the places to eat, my friend picked Panera Bread. The mouth-watering smell of fresh baked bread made me sorely miss being able to eat it. Instead, I had to sit there and eat my dry, hard, gross, gluten-free sandwich. As if the delicious surroundings weren't enough, my friend was looking at me like I had seven heads.

"Can't you have pasta?" She asked.
What do you think pasta is made from--magic beans? I wanted to reply. Instead, I turned this into what my mother calls a "teachable moment", and I explained that pasta was made from wheat. I felt so self-conscious, awkward, and embarrassed as I ate my separate food. After lunch I had my mom come and pick me up.

Gluten Withdrawals:

Leda had warned me about "gluten withdrawals". As part of these withdrawals, I also craving gluten. You know the brown whole wheat sandwich bread? I found some of that in the basement, and it looked so good. I almost ate a piece of it before I stopped and asked myself, do you want the bread or do you want to feel better? I was dizzy a lot, and it sometimes seemed like I couldn't understand what people were saying to me or I couldn't find the right words to say something. I also had bad headaches in addition to the stomach ache that I still had. Leda had suggested an enzyme that would help my body break down gluten faster and get it out of my system. Even though I was eating gluten-free every day and taking the enzyme, I still felt the same: sick, tired, depleted, and nauseous. 4-6 weeks, 4-6 week, 4-6 weeks kept running through my mind. Every day I was getting closer to those magical 4-6 weeks, but why wasn't I feeling better? I told my mom several times that I "just knew" that I wasn't going to feel better after going gluten-free. My emotions began to run wild. My mom did some research and found that crazy emotions are part of gluten withdrawals. 

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Gluten withdrawals: experts say that people are "addicted" to gluten because it is in everything we eat. Just like smokers and drug addicts go through withdrawals, people who have to stop eating gluten can also have withdrawals. Symptoms include: dizziness, brain fog, headaches, stomach aches, and almost uncontrollable emotions

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I had moments were I was very anxious, angry, hyper-sensitive, and cried uncontrollably. I won't go in to detail because to be quite honest, going in to detail about my gluten withdrawals symptoms is too hard for me to do. When I look back on my whole health journey, the gluten withdrawals was the worst part. Thinking back to that time brings back too many bad and painful memories, and I choose not to think about those memories. I always try to focus on the good, and some good things did come from my withdrawals. My mom shared two beautiful Psalms with me from the Bible: Psalm 27: 7-14 and Psalm 103. Psalm 27: 7-14 is still one of my favorites. The following verses  are especially meaningful to me: "Teach me Your way, O Lord; lead me in a straight path because of my oppressors....I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord." My mom told me that if I fixed my eyes on that "straight path", everything would work out. My favorite verses in Psalm 103 are verses 2-5: "Praise the Lord, O my soul, and forget not all His benefits-who forgives all your sins and heals all your diseases, redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's." Both these psalms really helped me cast all my worries and anxiety on God. I knew that I needed to trust Him and believe His words because everything was going to work out. "And we know that in all things God works for the good of those who love Him."-Romans 8:28. "For I know the plans I have for you,' declares the Lord. 'Plans to prosper you and not to harm you, plans to give you a hope and a future."-Jeremiah 29:11. I feel like my faith grew as I read and re-read these psalms and Bible verses. Erika, whose kids I babysit, let me borrow her copy of a great devotion book called "Managing Our Moods." My mom and I did a devotion every night, and through this great devotion book (and the Bible verses) my eyes had been opened. My new realization of what faith and trust in God meant helped me fight through the terrible withdrawal symptoms. 

As if Gluten-Free Wasn't Enough...


My mom is my inspiration!

The dietitian at Dr. D.S.'s office suggested that I cut dairy out of my diet. Are you serious?!? I had been gluten-free for three weeks, and I still did not feel any better. I was still losing weight, also. Dr. D.S.'s dietitian thought that dairy might be the reason why I wasn't feeling better. She also thought it was time that I start eating snacks in between meals, three times a day. So far I had lost 17 pounds, and the weight loss needed to stop. I had one of my famous post-doctor's office meltdowns in the car at the thought of not eating dairy, but I pushed it out of my mind and decided to have a fun afternoon with my mom. We were going to eat at P.F. Chang's to celebrate the end of school. Their gluten-free menu was delicious, and the pure chocolate truffle that was the size of a softball was the perfect way to say farewell to dairy. At this point, I didn't mind getting rid of dairy if it meant that I would feel better. The dairy-free products weren't too bad. I actually liked the coconut milk and ice cream. The cheese was made from soy, and it was a little weird. I was very hopeful at the end of May that I was turning the table. My stomach seemed to be less upset, my wild emotions were being controlled, and foods that contained gluten were starting to look disgusting instead of delicious. In fact, I learned that the smell coming from the bread aisle in a grocery store was enough to make me feel sick. Maybe if I was starting to reject the sight and smell of gluten, it was starting to leave my body? All I know is that I don't think I couldn't have survived those nasty gluten withdrawals if it wasn't for my mom. Being diagnosed with a life-changing diagnosis is very rough, but my mom made it easier. She showed me a new hope, a new light, and a new way to look at things. She ate gluten-free with me so I wouldn't have to be the only one eating something different. I'm still amazed at how strong she was when I was falling apart. All those books we read about celiac disease compared learning about a celiac diagnosis to going through the stages of mourning. Shock, denial, anger, grief, and finally acceptance. By the end of May, I was past shock and denial. The anger and grief were still there, but I realized that it was okay to take my time through each emotion. My mom, however, jumped straight to acceptance. She would deal with the other stages of mourning later, but now was the time to accept my diagnosis for what it was. I don't think I'll ever be able to thank her enough for that. I love you, Mom!! :)

TO BE CONTINUED!!