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!!