August 2011: The Second Opinion

August 2011

August 1, 2011:

My heart was racing as my mom and I drove to Dr. D.S.'s office. What was he going to say? My worst fear was that he was going to do another endoscopy, but I had no idea what to expect. My mom had been talking with my grandpa and Aunt Pat, and they both suggested that we get a second opinion. I didn't want to leave Dr. D.S. I had been gluten-free for almost three months, and there was no difference in how I felt. Reading food labels and thinking of cross-contamination was becoming second nature, and I knew I had not been contaminated with gluten. Shortly after we arrived, a nurse called me back. I had lost three pounds since my last appointment. Dr. D.S. entered the exam room and began his usual routine of asking me questions about how my summer was going, if I liked the hot weather, why I painted my nails green, etc. Then he asked about how I was feeling. My mom (who had been in constant communication with the nurses in his office) and I filled him in. Nothing had changed. There was still no pain; it was all nausea. After doing a physical exam, Dr. D.S. sat down on his doctor stool. 

"I do not want to do another endoscopy. I don't think Sarah's unending nausea is related to celiac disease."

His words hit me like a wall of brick. I had a gut feeling (no pun intended!) that there was something else wrong, but hearing it from the mouth of my doctor made it real. 

"I also think it's time to get a second opinion." Dr. D.S. added. 

My mom, who does better research than the FBI, immediately asked who his choice for a second opinion would be. She had heard bad things about other doctors in Dr. D.S.'s office. Dr. D.S. said that his top choice would be a Dr. Di-something in Des Moines or the Mayo Clinic. My parents had talked about taking me to the huge teaching hospital in Iowa City, mainly because it was much closer than Mayo. I thought it was strange that Dr. D.S. didn't recommend that we go to Iowa City. 

"I'm sorry that I couldn't fix the problem." Dr. D.S. said, and I could tell that he truly meant it. He decided to do one final round of testing before giving up and sending me to a new doctor. 

 When Dr. D.S. shook my hand and left the room, it never occurred to me that I would never see him again.

Normal, Normal, Normal....
Dr. D.S. ordered 11 tests: seven blood tests, one stool sample, one urine sample, an MRI, and a breath test, to check for bacterial overgrowth in my small intestine. All the blood samples came back normal-except for one of my thyroid levels. I already had an appointment with Dr. C., the endocrinologist, in September. The urine sample showed that I was not pregnant. Really?! The stool sample was lost by the lab so I had to submit another one, but it also came back normal. The last two tests were the MRI and breath test. 

I found myself hoping that one of these tests would be abnormal so I wouldn't have to switch doctors. The breath test was on August 5. I had to drink 1 1/2 cups of milk within five minutes at 7:30 in the morning. It was awful. After drinking the milk, I had to breath into a plastic bag at various times over the course of four hours. There was nothing worse than sitting in a freezing cold and germ-filled (remember, I picked up c.diff at this same hospital) for four hours while milk was sloshing around in my empty stomach. My mom and I came prepared with books, magazines, and iPods to keep us entertained. The weather outside was beautiful so we sat in a little flower garden in between breaths. We also shopped at the gift shop and found a magnet that says: "Grandmas are like moms with lots of frosting" to thank my Grandma for all her delicious gluten-free baking. I was not feeling well when the test was finally over, but I still babysat anyways. 

Gluten-free treats from Aunt Pat

 Three days later, my mom and I were back at the hospital for the MRI. Dr. D.S. ordered the MRI because "nausea starts in the brain". He wanted to get a good look at my brain to make sure nothing up there was making my stomach upset. Because it was a brain MRI, I had to be completely still. My head was trapped in a cage, and there was a lot of padding around my face. I am slightly claustrophobic so this was not an easy test to get through. The nice tech gave me headphones so I could listen to music, but it still didn't block out the loud and startling noises from the MRI machine. Halfway through the test, a dye was injected in to my veins to show contrast. By this point, I was ready to get out of there. I had a strong desire to move around, especially my neck. I'm definitely not used to holding still. I'm prayed during the whole time, and I could see my mom out of the corner of my eye. Finally, the test was over. 

"You are so brave." My mom complimented as we left the hospital. 

I've had some nasty tests ran on me, but the MRI was without a doubt the worst. 

When we got home, there was a huge box on the counter for me. My 16th birthday was two days away, but I rarely get packages in the mail for my birthday. My wonderful Aunt Pat had sent me a box full of gluten-free treats! There were cookies, pretzels, granola, and snack bars. It was a  treat after that scary MRI. My Aunt Pat is the best aunt ever! :)

The next day, the day before my birthday, I went on a bike ride with my mom and brother. I was getting ready to go when my mom came upstairs to talk to me. Dr. D.S.'s nurses had called, and every single test came back normal. He was sending a referral to another pediatric GI doctor who was in Des Moines. I couldn't believe it. 11 tests and they were all normal?! I did not want to leave Dr. D.S. at all. How could somebody as smart as him run out of ideas? I was angry about having to see another doctor, but at the same time I was scared. What was wrong with me? Was I going to live like this forever? 

Daniel's Last Supper :(

Meanwhile, summer was winding down. We had our tradition "last suppers" with Daniel and Rachel before they headed back to college for another year. We dined at Biaggi's for Daniel's last supper and P.F. Chang's for Rachel's. Both restaurants have gluten-free menus (the food is so good!), and the kitchen staff handles GF food correctly so there's no cross-contamination. We also had our second annual Back to School party at my grandparents' with all the family gathering for a meal and afternoon together before we went back to our schools.

A birthday picnic with my favorite
kids and their mom

 My sweet 16th birthday arrived on August 10. The only thing I wanted for my birthday was to feel better. My mom said that she would wrap it up with a bow on top if that was possible. I still had a great birthday, though. I was babysitting Lucy and Collin that morning so I brought muffins (GF of course) to their house. Erika (the kids' mom) treated me to a gluten-free pizza from Felix and Oscar's (another safe GF restaurant) and a picnic at a nearby park. The weather was perfect, and the kids were precious as usual; it was a great morning. After our picnic, my mom picked me up at the park and we went to get my driver's license. I made my first solo journey to one of my many favorite places--the library. For dinner, we grilled out and made Curits Stone's delicious Greek salad. My mom also made Hawaiian bread and a unbelievable gluten-free cake. Seriously, this cake tasted just like the chocolate cake from Sam's Club! It was incredible! Rachel decorated it with a pink Harry Potter theme. The meal tasted amazing; even to someone who didn't have an appetite! After opening my presents, my parents and I went to see Josh Groban in concert. His beautiful voice, along with his songs, was the perfect way to end a great birthday. Since it was my birthday, I decided that we were not talking about anything medical. No discussing my stomach, leaving Dr. D.S., going to a new GI doctor, absolutely nothing! It was a nice break, but I did not feel good that day. I felt like my stomach was trying to ruin my special day, but there was no way I was letting that happen.

Sweet 16!

 The day after my birthday, everything medical was being discussed. My appointment with the new GI doctor was set for August 26. My situation was not deemed an "emergency" so I couldn't get in any earlier. My mom had also made an appointment for me in Iowa City. I did not want to travel to get medical help, but my mom knew that there were often long waiting lists to see the specialists in Iowa City. We both wanted to give the new GI doctor a chance, but we also wanted to have a back-up plan. My appointment was scheduled on September 13 with whichever doctor had the closest available appointment. The receptionist informed my mom that the doctor that I landed with was the "best". I started praying that we could cancel that appointment. I just had a bad feeling about it.

 So now it was up to me to distract myself until August 26. I went to the famous Iowa State Fair, which was fun, but I was feeling awful. I brought a pillow to hold against my stomach in the car on our way there. This year, there was no deep fat fried fill-in-the-blank on a stick for me. No corndogs, ice cream (hello cross-contamination), Twinky log, Fair Square (a giant rice krispie that has malt in it), or any other traditional fair foods. Instead, I ate a salad-on-a-stick. Yes, you read that right. It was good, but not what I was used to eating at the fair. I didn't have much of an appetite so all the greasy, fatty, gross foods on a stick didn't look that good anyways.

Salad-on-a-stick

 I had a Harry Potter themed Sweet 16th birthday, and that was a lot of fun! I really threw myself into creating hand-crafted invitations, decorations, and games. My mom and I made Butterbeer, chocolate frogs, and cupcakes with the sign of the Deathly Hallows on them. Each room of our house was decorated with streamers in each houses' (Gryffindor, Slytherin, Hufflepuff, and Ravenclaw) colors. I also hung pictures of characters throughout the house. The party was great fun, and it was also a great distraction for me. 

 That terrible economics class ended in August--hallelujah--so there were no more three hour classes.

 As much as I tried not to think about it, an important date was coming up: August 21. My sister was going to turn 19, but if you remember from "Mono Sucks part one", August 21 was when I came down with mono in Wisconsin. I had been sick for a year. Sure, there were high moments when I was feeling better than usual, but in the long run I had been chronically sick for one year, 365 days, and 52 weeks. My mom told me that Rachel didn't want to do anything special for her birthday because she didn't want me to think about what happened on her birthday last year.  As sweet as that was, I wanted her to have a nice birthday. I tried to distract myself as much as possible on August 21, but I was still down in the dumps. I'm sure it was just a coincidence, but I started to feel worse on August 21. I found myself almost unable to eat. I had absolutely no appetite so I had to force down food, even though I started eating tiny, pathetic amounts of food. I was also cold all the time. Iowa summers are known to be hot, but I was covered in goosebumps. I had a constant daily headache, and I was dizzy a lot. I noticed that I felt weak all the time. Lifting Lucy or Collin was difficult, and I couldn't carry my laundry basket. I would be out of breath after climbing up a flight of stairs because I was so weak and out of shape. Even though I had my license, I didn't feel up to driving. That appointment on the 26 was coming closer, and I was starting to get nervous.

The Bad Day:

A very sick 10th grader

August 24 sticks out in my mind as I terrible day. I couldn't drive myself to babysit so my mom drove me. The weather was beautiful so I took the kids outside to play. I felt terrible not running around with them, but I was feeling worse than I had ever felt. I text my mom, and she suggested that I get a class of Ginger Ale to see if that would calm my stomach down. I was still drinking clear fizzy pop and peppermint tea daily even though it never helped my stomach. I helped myself to some Ginger Ale, but it did nothing. My mom sent me encouraging texts and called my grandpa. My grandpa was calling my mom every day to check on me. After hearing what was going on, he told my mom to call the new GI doctor's office and see if I could get in early. My appointment was only two days away, but I was feeling so terrible that I couldn't wait two more days. By the hand of God, there was a last-minute cancellation for an appointment right after lunch the very next day, August 25 so my mom quickly grabbed the appointment. When my mom picked me up from babysitting, we went to register and get school pictures for the home school group that we're part of. I got done babysitting at 12:30 so my mom packed me a lunch. This is a weird detail to remember, but it clearly shows how terrible I was feeling: I remember eating a few bites of a peanut butter and jelly sandwich, one apple slice, and a couple chips. I had reached a new level of nausea. On a scale of 1-10 (with 10 being the worst), my nausea was at an 8-10. Everybody said I looked good in my school picture, but they were referring to just my hair. I looked terrible! I had dark circles under my eyes, and I looked so sick it was sad. I was hopeless.

The Second Opinion:

My mom had made a reassuring discovery about my new pediatric GI doctor--Dr. Di. In "The Aftermath: To Talk of Things to Come", Dr. S. (my pediatrician), wanted to send me to a pediatric GI doctor that was in the same building as he was, but there was a two month waiting list. Now I was on my way to see the doctor that Dr. S. (who has never been wrong) first wanted to send me to. Also, the doctor that I had an appointment with in Iowa City trained Dr. Di. I started to see a tiny glimmer of hope as we parked in the familiar parking lot. Instead of going upstairs to see Dr. S., we walked in the building and headed straight to Dr. Di's office. 

"Now remember, there's a reason these guys go into pediatric gastroenterology." My mom reminded me as we walked through the office doors. I was terrified. What was this new doctor like? Would I like him? Would he be slightly eccentric like Dr. D.S.? What was he going to say?

As my mom checked me in with the receptionist, she pointed out a little box. There was a sign above the box saying that this office prays for patients and their families. If there was a specific prayer request, paper was available. I wrote down my request to feel better and have no more scary tests and tucked in it the box. I sat down with my mom in the waiting room to fill out paperwork since I was a new patient. 
"Do you do drugs?" My mom asked me, jokingly, as she looked through the question.
"Yes." I said sarcastically.

It turns out my mom was just as nervous as I was: she checked "yes" instead of "no"! We had a good laugh about that before turning in the paperwork. Shortly after giving the paperwork over to the receptionist, a male nurse opened a door and called me in. He was very nice as he took my vitals. Surprisingly, I hadn't lost any weight since seeing Dr. D.S. at the beginning of the month. The nurse (we'll call him Nurse J) led me through a hallway and into a small exam room. He looked over my chart for a while and doubled checked who referred me.

"Dr. D.S. referred you? Man, I haven't seen that in three years." Nurse J. commented. He told us that the doctor would be in shortly. 

 There was a short  knock at the door, and a tall Italian doctor in scrubs walked in, introducing himself. After reviewing my lengthy medical history, Dr. Di said that even though he just met me, he could tell that I didn't feel good. I had purple circles under my eyes, my skin color had a gray tint to it, and it was obvious that I had lost a lot of weight-26 pounds by this point. He asked if I had a colonoscopy or just an endoscopy. I told him that I just had an endoscopy, but I knew what was coming.

 I have a terrible habit of getting a heart murmur when I'm nervous. I had another heard murmur when Dr. Di was doing his physical exam. Dr. Di said that an enlarged heart could cause nausea ("you have a big heart" he joked), and he wanted me to have a chest x-ray after our appointment. My mom explained that I heart beats really fast when I'm nervous, but he still wanted me to do the x-ray just in case. After the physical exam was over, Dr. Di gave us his possible diagnosis: Crohn's disease.

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Crohn's disease is an autoimmune member of the IBD (inflammatory bowel disease) family. This lifelong condition causes inflammation of the lining of the digestive track. There is no cure for Crohn's disease, but there are several medicines and treatments for Crohn's disease.
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I have some "experience" with Crohn's disease. When I was in second or third grade, I became good friends with Megan, a girl in the home school group. One summer, Megan was diagnosed with Crohn's disease. Since I was so young, I really didn't understand the disease. I just knew that she was sick. My mom, sister, and I walked with my friend in a Crohn's walk, we visited her in the hospital, and got together a lot. As Megan and I got older, we lost contact. As soon as Dr. Di said he thought I had Crohn's, I made a mental note to Facebook message Megan.

Through my health journey, I have become e-mail pen pals with a girl named Hannah. Hannah also has Crohn's disease. We have become very close since we share a common bond of stomach troubles.

Dr. Di told us about a case he had: a young boy's only symptoms were nausea and unexplained weight loss. Dr. Di scoped this kid and found out that he had Crohn's. Dr. Di said that he wanted to do a double scope: endoscopy and colonoscopy. I had been preparing myself for something like this so I wasn't too surprised. If I did have Crohn's, I would immediately be put on steroids. Dr. Di said that I could be feeling better in a couple days! In addition to his Plan A, Dr. Di also gave us his Plan B, C, D. Plan B was a check into my thyroid, Plan C was a certain gall bladder test (Dr. Di said that sometimes gall bladders that aren't working right can cause nausea, but most gall bladder problems produce pain on the right side under the rib cage), Plan D would be the last resort: Iowa City. Dr. Di told us that he knew the doctor who I was scheduled to see, and he might even be able to get me in sooner if need be.  He was also going to put me on some prescription anti-nausea medicine after the double scope.

 The endoscopy/colonoscopy was scheduled for Tuesday, August 30. I would have to go through colonoscopy prep for the next five days. Nurse J came back in and instructed us on how to use and measure Miralax.

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Miralax is a laxative that is comes in a powder form. It can be mixed in with any drink.
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 The last step for the prep was to drink a bottle of magnesium citrate; apparently it was going to taste very salty.

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Magnesium citrate, or mag citrate, is a strong laxative used for colonoscopy prep or extreme constipation. It irritates the bowels into moving. The taste is salty and sour.

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 As my mom and I left the office and went over to the hospital for the chest x-ray, we talked about the visit. There are several key things that I want to point out about Dr. Di:

*His plan. So many times, Dr. D.S. would say "come back in two weeks", but we never knew what the next step was. Dr. Di revealed his whole plan, start to finish.

*He understood us. I was in absolutely no pain. My main problem and concern was nausea. So many doctors want to know, "where does it hurt", but nothing hurt on me. My stomach was severely upset, not severely painful.

*His personality. While my mom and I waited for the chest x-ray, my mom made the comment that Dr. Di seemed like the dog in the Disney movie "Up": "I have met you, and I love you." Dr. Di was instantly likable. 

*His genuine concern. My mom and I could tell that Dr. Di was concerned about me. Several times he said, "I don't want you losing any more weight." This dude was as real as real can get.

"The Prep is Worse Than the Procedure"

I lost track of the times people said that to me. I was learning the hard way that colonoscopy prep is crappy--literally! :) I messaged my friend Megan on Facebook and found out that she also sees Dr. Di, and her family also really likes him. Megan's mom called my mom during the prep to encourage us and give us more information on Crohn's disease. My e-mail friend Hannah was also very encouraging and full of information. While chugging 20-some ounces of Miralax twice a day, I helped move my sister back into her dorm. Well, I didn't really help. I stood by the car and guarded her stuff because I was too weak to lift anything. I also went to my grandparents' for a special lunch for my grandpa's sister, Connie. My mom and told all the family not to say anything about my upcoming colonoscopy, and everybody obeyed. My Uncle Roger gave me several of his famous bone-crushing, eyeball-squeezing, breath-taking hugs because he knew. Those hugs are the best hugs ever! My grandma also told me in a whisper: "Now Sarah, I just want to let you know that we'll be praying for you and your doctor on Tuesday." Then she added, "and that's all anybody is going to say about it!" with a tone that suggested anyone who broke the rules would be cut out from her will. I love my grandma!

Moving Rachel into her dorm :(

 The last day of the prep was Monday, and it was the day before the scope. I wasn't allowed to eat anything solid that day, and I had to drink a bottle of magnesium citrate around noon. It didn't smell bad, but it was the worse thing I have ever tasted! It was saltier than ocean water and very sour. Dr. Di said that I could "chase it down" with something to help me get it down. As I sipped on my magnesium citrate and ate jello for lunch, I couldn't help but cry. My mom checked out a DVD of the show "I Love Lucy". I had to stay by the bathroom all day on Monday, and my mom thought it would be nice to laugh for a change. It was nice. I will always have a special place in my heart for the "I Love Lucy" shows. I laughed so hard at the things that Lucy and Ethel came up with.

The Endoscopy/Colonoscopy

We had to be at the hospital at 9:00 a.m. on Tuesday, August 30. My plan was to wake up, check my e-mails and Facebook, and get ready to go. My brother, Daniel, sent me a Facebook message wishing me good luck. As I got out of bed, I suddenly felt like I was going to pass out or throw up. I sat down on the floor and crawled over to where my cat, Oliver, was sitting outside my bedroom. Everything was turning bright yellow, and I was so thirsty. I remember sitting by the toilet in our upstairs bathroom, but I have no memory of how I got there. I crawled on the floor back to Oliver. I called for my mom, and the panic in my voice sent her flying up the stairs. I explained what was going on, and she helped me stand up and get into my closet so I could get dressed. I did not trust myself to stand up so I got dressed while sitting on the floor. My mom drug a chair into my bedroom closet so I could brush my teeth and comb my hair. I desperately asked my mom if I could have a drink of water, but she told me that I might throw it up during the scope. I so wanted to open my mouth and place it under the facet while I was brushing my teeth, but I didn't want to be the rebel patient who chokes on her own vomit so I obeyed. I was so dehydrated, nauseous, and weak from the clean out. My mom didn't even know if she could get me out of the house. She was worried that something would happen to me on the way to the hospital. Even though I was fully awake, I do not remember most of the car ride to the hospital. My only memory is sitting in the passenger seat clutching Harry Potter and the Goblet of Fire (which felt like it weighed 500 pounds since I was so weak) with a waste basket by my feet in case I threw up. I remember walking through a skywalk with my mom literally holding me up. I also remember getting sympathetic looks from other people as I passed them. I made it to the endoscopy waiting room thanks to my mom. While she checked me in, I told her that I had to sit down right away. I shuffled over to a couch, sat down, and immersed myself in the world of Harry Potter. Everything around me was spinning, but my main focus was on Harry riding on the Hogwarts Express. We had been waiting for about 10 minutes when Dr. Di came in, gave me a nice smile and a wave, and went to talk to another family. I had to go to the bathroom so my mom helped me get there. En route to the bathroom, my mom remembers that I also collapsed. Thankfully, it was time to start the IV. I had a funny and sassy nurse with a Southern accent who instructed me to change into a hospital robe and gross tan socks. 

"I know...they do not match the robe whatsoever." My nursed commented.

Two other nurses drew blood (Dr. Di had ordered some thyroid levels) and started the IV. One nurse oddly commented me on my veins and how they were so easy to see. She then proceeded to completely miss the vein. After the IV was started, I was sure I was going to throw up. My mom quickly got up and found a nurse who brought me one of those poop containers. I pushed my Harry Potter book out of the way and dry heaved into the container. My stomach was killing me. The nurses were so kind and compassionate to me. With the dry heaves out and the IV in, I was starting to perk up a little bit. I had to give a urine sample to prove I wasn't pregnant. I almost laughed at myself as I tried to maneuver around the IV pole in the bathroom. When I was settled back in my curtained off section of the pre-endoscopy room, the nurses kept me distracted. One nurse and I had a very pleasant conversation about Harry Potter and homeschooling. Dr. Di soon came in and went over the procedure, the risks, and the plan. If he saw Crohn's, he was going to prescribe Prednisone right away.

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Prednisone is a steroid and an anti-inflammatory medicine. Its side effects include increased appetite, swelling, weight gain, blurred vision, and nausea.

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If he did not see Crohn's, he was going to prescribe an anti-nausea medicine. He also said that he was going to lo0k at my villi (what absorbs calories and nutrients from food) to see if they were standing up. He was going to take biopsies to make sure that celiac disease wasn't present anymore. If the biopsies showed celiac disease, he was going to have me talk to a dietitian. After reviewing his plan of attack, Dr. Di casually asked what book I was reading. I told him it was the fourth Harry Potter, and he said that those are "good books". My jaw almost dropped. A totally awesome doctor who also likes Harry Potter?! SCORE!!

Nurse J popped in and said hello before an anesthesiologist came in and talked to me about being put under. I would have a breathing tube put in my trachea, and the anesthesiologist would stay in the room. I wasn't nervous about being put under, I was more nervous about what Dr. Di would find inside me. About five minutes later, a nurse came and said that they were ready for me. I hugged my mom goodbye and walked with a nurse down the long hallway with curtained off sections. We stopped to get a warm blanket and then made our way through some doors and into another hallway. Shortly we were in the procedure room. It was a very busy room: the nurses were getting things ready, the anesthesiologist was writing something down, and Dr. Di gave me a reassuring smile. I laid down on the table, and some nurses put pillows under my knees and covered me with a warm blanket. While the nurses stuck heart monitor stickers on me, I noticed that there was music playing quietly and softly. I last thing I remember was somebody saying: "okay Sarah, here we go."

 Meanwhile, my parents were sitting in the waiting room for me. Dr. Di told my mom that the scope would take 30 minutes. If it took longer than 30 minutes, that meant that he probably found something. Right at 30 minutes, Dr. Di waved my parents to follow him back to the curtained off recovery room. I opened my eyes with a start, and saw my mom was smiling down at me.

"Where am I? What happened? I'm so cold. It's too bright in here." I was so confused.

My mom answered my questions and asked the nurse to turn the lights down. The nurses had clipped the white oxygen clip to my ear because I kept taking it off my finger. I fell in and out of sleep for a couple hours. I woke up when the nurse brought me a 7up to drink.

"Mom...is this gluten-free?" I asked. I remember being very concerned that it wasn't. My mom assured me that 7up is gluten-free, I took a few sips, and fell back asleep. I remember hearing bits and pieces of Dr. Di's conversation with my parents. Everything looked normal: my villi were standing up and there was no visual presence of Crohn's disease. Dr. Di took 20 biopsies. The blood that was taken before the scope showed that my thryoid levels were lower than they were at the beginning of the month. I had an appointment with the endocrinologist (Dr. C.) in two days. Dr. Di also revealed that he tested me for cancer, and it came back (thank God!) negative. Dr. Di was prescribing reglan for nausea.

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Reglan is most commonly used for nausea and heartburn

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As I drifted in and out of sleep, I asked my mom if my cat, Oliver, was okay. I was also very concerned about a baby that I could hear crying. Dr. Di came into my little cubical, and asked if I was okay. I mumbled that I was fine. Then he patted my head and told me that I did "very good."

 The nurses soon came and told me that it was time for me to go home. I remember getting dressed and sitting in a wheelchair, but I don't remember the ride home. For the rest of the day, I slept on the couch with my pillows and Hedwig, my stuffed owl. My dad brought me some beautiful flowers, and I received a special package in the mail. Daniel and Meghan (my brother and his girlfriend) had sent me a little care package! There was a heartfelt note, a beautiful purple and white scarf, and a cute hair bow. How sweet! :) I watched "I Love Lucy" in the evening, and I talked to my grandpa and Daniel on the phone.

 Now that the scope was over, we just had to wait a few more days to find out if I had Crohn's. I did not want to have another lifelong autoimmune disease, but I did want to feel better.

TO BE CONTINUED....

Flowers, scarf, and bow from
my family!

July 2011: The-Girl-Who-Kept-Living

July 2011

That's just how I roll

Finally...the month I had been waiting for had arrived! Everybody who knows me can tell you that I'm a Potterhead. The books were a huge distraction to me while I was sick, and my love for the story and characters grew with each book that I read. Harry Potter and the Deathly Hallows Part Two-the last installment-was coming out on July 15, 2011. I had my ticket for the midnight showing, and I was in the process of making a special t-shirt dedicated to my favorite character, Severus Snape. I sipped on Sierra Mist (something I did daily in an attempt to help my stomach) while working on my t-shirt. Pressing a pillow to my stomach would sometimes help it feel a little bit better, but how was I supposed to press a pillow to my stomach while using fabric paint on a t-shirt? Well, I came up with a genius solution... if I do say so myself. I put a small pillow on my stomach, and then put a wide belt around my waist. I cinched the belt tight enough so that it pressed the pillow to my stomach. Genius, right?! The build-up to the movie began when Harry and the Potters, a two-man band that sings about Harry Potter, came to the library. I went with some friends and we made matching "Dumbledore's Army" t-shirts. I had a blast! I didn't care how my stomach felt: I was dancing and jumping around like an obsessed fan girl at that concert.

 My stomach still wasn't feeling better. I had my first appointment with Dr. C., a pediatric endocrinologist. I was nervous going in to the appointment, but all those nerves faded away when I saw "Entertainment" magazine with Daniel Radcliffe's face on it in the exam room. Dr. C. was tall, thin, old, and nice. Her cell phone, with very current ring tones, rang several times during the appointment, but she seemed very smart. Her theory was either that my thyroid was trying to "self-correct" itself or I was heading toward having a hypo or hyper thyroid. Dr. C. did not think my stomach aches and weight loss were tied to a thyroid problem. My dad has thyroid problems so she thought it could all be genetics. She didn't want to medicate me, but instead she wanted to keep an eye on my levels. Seven blood tests (four vials) were taken and sent to the lab. All my blood work was normal except for my TSH. Dr. C. wasn't worried for the time being. We scheduled another appointment in three months.

Life Goes On
 I celebrated the 4th of July with my family by going to Yankee Doodle Pops-a patriotic concert held by Des Moines' capitol. I ordered green celiac disease awareness bracelets from the Center for Celiac Research for me, my family, and friends. I couldn't help but smile when I saw my parents and siblings all wearing their green "Making Tracks for Celiacs" rubber bracelets. My sister, Rachel, was tested for celiac disease, and her test came back negative. My mom was the only person left to be tested, but she went gluten-free to support me! How sweet! :) My mom and I attended our first celiac support group meeting held at a mega church in West Des Moines. There were lots of samples, a summer themed potluck, and giveaways. It seemed strange to be completely surrounded by food that I could eat!

 On July 8, I had another appointment with my pediatric GI doctor, Dr. D.S. I noticed that each appointment followed the same trend: we would start by discussing things totally unrelated to my stomach. Dr. D.S. asked how my summer was going, what I did for the 4th of July, if I found any new gluten-free foods, etc. Then we would slowly ease our way into talking about my health. Even though I was overflowing with excitement for the new Harry Potter movie, I was still not feeling well. My stomach was constantly upset. I was drinking Sierra Mist (I was bored with Sprite and 7up) every day, but it never worked. I had not lost any weight since I last saw Dr. D.S., and Dr. D.S. said that was a good sign that my villi (what absorbs nutrients and calories in food) might be starting to stand up. I had not been contaminated with gluten since the envelope situation (see "Gluten: Public Enemy #1"). I was adjusting to the taste and texture of gluten-free foods. Gluten-free brownies were unbelievably good! I also enjoyed the GF pizza crust that my mom and I made together every Friday for dinner. I didn't really miss any foods that I couldn't eat anymore; probably because I was never hungry and food didn't really interest me. Dr. D.S. was still concerned about my unending nausea. After performing his usual physical exam while asking about the kids that I babysit, he said that it was time to medicate me. Dr. D.S. said that he wanted to put me on two types of medicine: zantac and amitriptyline.
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Zantac reduces the amount of acid in the stomach.

Amitripyline (am-i-trip-t-lean) is an antidepressant used to treat depression issues. When given in a low dose (75 mg or less), amitriptyline creates a positive brain-to-gut connection so digestion is received as normal by the brain.

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"I'm not saying this is all in your head, and you are not going crazy." Dr. D.S. reassured me as he brought up amitriptyline.
The amitripyline would take two weeks to kick in, and I would have to stay on it for six months or else the brain-to-gut connection could break. The only side effect was that it was going to make me sleepy so I would need to take it before bed. Amitripyline can cause heart problems so I would have to have an EKG (electrocardiogram) before starting the medicine. I would also have to have another EKG in one week to make sure the medicine wasn't effecting my heart.
"You're mother is taking extensive notes." Dr. D.S. commented as he saw my mom turn her piece of paper to write on the back after filling up the front. "What do you think?"
I was surprised that he would ask my opinion first. "Umm...yeah, that sounds great!"
I was prescribed zantac and amitripyline, and I would start both that night, permitting the EKG came back normal.
 After our appointment, my mom and I followed the directions given to us by the nurse to the out-patient check-in desk. A nice guy checked me in, gave me a hospital bracelet, and sent us to where the test would take place. A male tech came and took me and my mom into a room with a treadmill (used for other heart tests) and a table for me to lay down on. The tech was really nice; we talked about musical instruments. After telling him that I played the piano, he asked questions about my teacher and what

My heart beat...so cool!

kind of music I liked to play while sticking cold monitor stickers on my chest, stomach, and legs. After typing some things on a computer, the up-and-down images of my heart appeared on the screen. It was so cool to see my own heartbeat! After the test was over, my mom and I quickly drove home for my piano lesson. My piano teacher, Mr. H., is so cool and nice. He had been following my medical journey since I got mono. He told me about the celiac support group and another student that also has celiac disease. He asked good questions and even told me that he was praying for me. He is so great.
 My EKG came back normal so I was going to start amitripyline that night. I was feeling very optimistic about this medicine. There was really no reason why it couldn't work...

Within a few days of starting the amitripyline, I had some weird side effects. I have a low fever and random joint pain. I would be feeling fine until, out of nowhere, my elbow would hurt. It would go away, and then my knee would hurt. All of this was only on the right side of my body. It was the only side effects I had from the medicine. It wasn't making me sleepy like Dr. D.S. said it would. My mom called Dr. D.S.'s office, and he didn't think it was anything to worry about. Although the side effects were annoying, I had bigger and better things to focus on.



  The midnight premiere of the final Harry Potter movie was finally here! My mom and I had been watching all the previous movies to lead up to the finale. I wore my special Snape shirt and drove to the

Severus Snape <3

movie theater with my mom, sister, and my sister's boyfriend. I mingled with other Potterheads in costume until the movie started. It. Was. Incredible! I cried through the last hour when the fight for Hogwarts progressed and beloved characters were lost. I wasn't sitting in a movie theater with a terrible stomach ache and random joint pain when I watched the movie. I was breaking into Gringotts, flying on a dragon, fighting for Hogwarts, and mourning my favorite characters. I had to go back to reality, though. The next day brought the second EKG. I had the same friendly tech, and we chatted about music again. The EKG came back normal. I had been on amitripyline for a week now and there was now improvement-in fact, things had gotten worse. My stomach ache was more extreme. It was so extreme that I had trouble falling asleep. It even woke me up several times during the night. Ten days after I started amitripyline, Dr. D.S. switched me to nortriptyline, another medicine in the same family as amitripyline and used for the same purpose. I was having trouble coping with this new problem now that Harry Potter was over. I still read a chapter or two (or three or four!) in a Harry Potter book each night before bed so I could end the day on a positive note. I honestly believe that reading those books before bed helped me survive.

 As if dealing with severe nausea wasn't enough, I was taking an economics class that I hated. It was long, 12-3, on Monday afternoons and unbearably boring. The class had to watch videos of an annoying econ expert with an accent and the background music was irritating. Everybody else in the class, besides Rachel's boyfriend, was annoying and so were their parents. I didn't feel good, and I did not want to be there.

 One week after starting the nortripyline, my mom called Dr. D.S. with an update. I was not doing well; my stomach felt like it was going to burst. Dr. D.S. had me stop taking the medicine, and he ordered an abdominal ultrasound. His nurse also mentioned that he might want to do another endoscopy. I hit the roof. Absolutely not. There was no way I was going to go through that again. I had no problem with the abdominal ultrasound--I've gone through so many that it was almost easy. When the ultrasound came back normal, Dr. D.S. decided that we would discuss other options at our next appointment, which was five days away. I stopped taking all medicine because it wasn't working. I was dreading the next appointment. I just had a feeling that he would want to do another endoscopy. Even the thought of another scope made me cry.

In the midst of all of the chaos that was the end of July, I have a fantastic memory: my brother, Daniel, was going on a bike ride and asked if I wanted to come. It had been a while since I had biked, and I liked spending time with Daniel, so I enthusiastically said yes. My mom had told Daniel several times that he couldn't go to fast or too far, since I was "fragile". At the beginning of our bike ride, Daniel rode painfully slow and looked over his shoulder almost every minute to check on me. I told him he could speed up so he did, but he asked if I needed to stop several times. My brother has always had the ability to make me laugh hysterically-no matter what I'm going through-and the bike ride was filled with outbursts of laughter. As we traveled along Des Moines' great bike paths, I realized that I had no reason to be terrified of my upcoming appointment with Dr. D.S. All that mattered was that I made a great memory with my brother; one that still sticks out today through the problems of July 2011. Despite that fact that I felt awful, I was still living; I was doing what I wanted to do. It was almost kind of like how Harry Potter still played Quidditch even though Voldemort (excuse me, You-Kn0w-Who) was trying to capture him and ruin his life. Or maybe that's just the Potterhead in me!

TO BE CONTINUED....

June 2011: Waiting to Feel Better

June 2011

Babysitting Therapy with my Lucy!

Summer has arrived!! Warm weather, no school, and sleeping in is usually on the agenda for most 15 year olds during the summer. I, however, wanted to stay busy. I had a new schedule of babysitting: Monday nights, Wednesday mornings, and Friday mornings. I was enjoying playing outside and going on little field trips with my two little friends, Lucy and Collin. I loved my summer mornings playing outside, going for walks, reading, and spending time with two great kids. I felt better, physically, mentally, and emotionally, after babysitting. Both kids are hilarious, clever, smart, and sweet. On some days, those random little hugs and kisses made everything seem better. Even though they had no idea what was going on with me, I really believe that my time spent with those kids helped me survive my health nightmare. They gave me something to look forward to and something to get out of bed for. I love you Lucy and Collin! :)

Mr. Collin

 I was going to take the dreaded Driver's Education in June. I would be 16 in August, and I was going to get my license. I was a little worried about Driver's Ed because most of the time I wasn't feeling well enough to drive. My mom helped me overcome this worry by encouraging me, if I felt up to it, to drive wherever we went.

 My health seemed to be improving! I had good days and bad days--I felt hunger pangs for the first time since I got sick in April. My moods and emotions were still mimicking a roller coaster, but I learned to channel those crazy, gluten withdrawal moods by working on a craft project or reading Harry Potter. My mom has June 6, 2011, recorded as a great day for me: my personality was back along with my energy levels, and my stomach wasn't as upset.  My knowledge of gluten-free food and cross contamination was growing. There was a co-op in Iowa City that had a plethora of gluten and dairy free (GF and DF) foods. Meghan, my brother's girlfriend, was nice enough to pick us up foods that we couldn't find in Des Moines. It was like Christmas when Meghan came with her cooler. Tortillas, bread mixes, DF cream cheese, sour cream, yogurt, and cheese galore! I tried eating Greek food at the annual Greek Food Fair, and that resulted in my mom and I trying to communicate to three different Greeks, who were yelling at each other, that I couldn't have a bun on my plate. I was getting used to the taste and texture of gluten-free and dairy-free foods, and I was getting a lot of experience with reading food labels. I was also getting a lot of help with food (and other things) from my grandparents.

Granny & Grandpa:

My mom's parents have been farmers since, well, forever. As I mentioned earlier, my grandpa had a farming accident in 1994 that left him in a wheelchair. He isn't in any old ordinary wheelchair though. A special, state-of-the-art wheelchair was designed that allows my grandpa to travel on gravel roads and farm almost like he did before his accident.

 Grandma and Grandpa, like all grandparents, were concerned about my health. When they learned about my celiac diagnosis, they were armed and ready. They wanted me make sure that I could still come to family holidays and gatherings and eat safely. Grandma got in touch with her sister-in-law, Aunt Connie, who searched Ebay for gluten-free and dairy-free cookbooks. She found an awesome cookbook called "Cooking for Isaiah". It's written by an Italian mom whose son has celiac disease and is also dairy-free. Her cookbook is filled with waffle recipes, bread recipes, a great pizza crust recipe, and lots of desserts. I should note that my grandma and mom both have a strong sweet tooth. They like their desserts, chocolate, brownies, cookies, and any other sweet treat. Grandma loves to cook and feed people so what should she do? Bake me pounds of gluten-free and dairy-free desserts. She would bake enough cookies, cupcakes, chocolate cakes, and other treats to fill four 9x13 Tupperware containers. Her two famous cookies are: peanut butter and jelly cookies and chocolate cookies that have dried cherries in the batter and a cherry in the center. There was no way these delicious cookies could be gluten-free, but they were! Gluten-free mixes are expensive and they don't really taste that good. My mom and I would spend about $100 of gluten-free food a week because of the mixes. Most of our muffins, cakes, breads, and pizza crusts turned out dry. Baking from scratch was difficult and not like "normal" baking, but it was a huge money saver and it tasted WAY better than the mixes.

 While Granny took care of the food aspect of my health, my Grandpa took care of encouraging his "Little Sarah". Grandpa learned how to text, and he got in the habit of texting me every night. It started when the gluten withdrawals started. Grandpa had started calling my mom every day to check on me. My mom told him that I was having a rough time with taking gluten out of my body so Grandpa decided to send me an encouraging text, reminding me that God was always with me. He also liked to send funny jokes via text message. In one text, Grandpa told me that people who don't eat gluten are smarter and more beautiful than people who do eat gluten. He ended his texts by saying: "goodnight sweetheart i love u we we", just like that. "We we" comes from an interesting conversation: when I first started high school (2010) I told my grandpa that I was learning French. He knew "qui" (pronounced "we") in French and asked me one day: "So what does qui qui mean?" I told him that it meant, "yes yes". Well, Grandpa decided that it meant "I love you". You can probably imagine my shock and slight panic attack when I got a text from my grandpa that just said, "we we". It has become our secret code, and I love it!

  One day when the mail arrived, I found a mailing envelope with my name on it. When I looked at the return address, it said: We We. My sweet grandparents had sent me a beautiful necklace with a butterfly charm on it. This poem was engraved on the back of the butterfly: "Just when the caterpillar thought the world was over, she became a butterfly." My grandma had bought found the necklace a long time ago and decided to keep it. She thought that one day some one would need it. :)

The Not-So-Sweet Things:

Every year, a huge homeschooling conference comes to Des Moines. Homeschoolers from all over Iowa and the surrounding states attend the conference to hear speakers and shop for curriculum. Friends of ours, who also homeschool, come every year. While the moms are at the conference, the dads are in charge of all the kids. We've done all sorts of fun things in the past, but I wasn't really looking forward to this year. Although my gluten withdrawal symptoms were getting better, they were still there. I absolutely had to get a good night's rest or else I was a complete wreck the next day. I was also very clingy with my mom. If she was three minutes late picking me up, I would worry that something was wrong. I was used to my mom being with me almost 24/7, and I didn't want to spend the whole weekend away from her. My mom was also worried about leaving me in the care of the dads and siblings for the weekend. My mom was also worried about the food situation. Gluten-free food is expensive enough for one person, and we were going to have nine mouths to feed. All of my food was gluten-free, but the rest of the food on the table wasn't. My mom was terrified that I was going to be cross-contaminated during meal times while she wasn't there. I stood watch in the kitchen and stopped my dad on several occasions from cross-contaminating my food. I eventually stepped in and guarded my food. Everything turned out fine in the end, but it was a weekend that was way more stressful than it should have been.

 Right after this stressful weekend, Driver's Ed started.....and it was awful. I was convinced that I already knew everything there is to know about driving so I didn't see why I had to take the class and do all the homework that followed. Driver's Ed was Monday-Thursday from 8:00-10:30 for 12 days. I drove on Tuesdays and Thursdays from 3-4. The teacher was nice, I actually knew somebody in the class, and I even made a new friend so there were some good parts about Driver's Ed.

 I was learned the hard way that I am severely sensitive to gluten. I had noticed that the smell of bread coming from a Subway or the bread aisle in grocery stores made me feel sick. I felt better if I plugged my nose or over away from the smell. I made the newly-diagnosed mistake of licking an envelope. Some idiot came up with the idea to put gluten in that gross tasting yellow-ish substance on the back of envelopes. I was feeling great until I licked the envelope on that Father's Day card. Within seconds, my stomach felt like it was going to explode. I also had a pounding headache, and I could barely eat anything. This mistake taught me that I really needed to be careful about what I put in my mouth. This discovery lead us to the realization that I was getting cross-contaminated at church whenever there was communion. My gluten-free communion wafers were on a separate plate, but my pastor picked up one of my wafers to give to me after just touching all the regular communion wafers. My mom told Pastor F. about this problem, and we began to train him to give me the plate that held my GF wafers. On several occasions, Pastor F. understandably forget and tried to give me a regular wafer. This became a little joke of ours: I would immediately pull back from the communion rail with a look of disgust on my face. This reminded Pastor F. to give me the special plate. As is custom at our church, we shake hands with the pastor before leaving. Pastor F. often joked about how I would have to wash my hands after shaking his hand that touched the wheat wafers. He also joked about how he had never seen anybody pull away from Christ's body like I did. We had a lot of fun with something that is supposed to be taken seriously. It was great comic relief! :)

As June came to its final two weeks, a lot was happening. Both my brother and dad had been tested for celiac disease as suggested by my GI doctor. Both of their tests came back negative. My mom was so relived. She knew they wouldn't have been able to handle it. Daniel made me laugh until I cried (something that had not happened for a very long time) when he said that his "entire social life would be ruined" if he had celiac disease and had to watch what and where he ate.

 I had my first appointment with Dr. D.S. after being diagnosed with celiac disease. Even though June had started off great, it wasn't ending great. I was still battling a constant upset stomach every day. My mom was doing everything she could to get gluten out of the house. She even bought a new cutting board and colander. Dr. D.S. was very concerned about my weight loss (I had lost 20 pounds by this point) and that I wasn't feeling better. He ordered two blood tests: a tTG (tissue transglutaminase antibody) that would show how much gluten was in my blood. He also ordered some thyroid tests. The thyroid is a gland in the throat that controls hormones. A connection between celiac disease and thyroid problems is very common. Dr. D.S. thought that my thyroid might be preventing me from feeling better or it was going to take a while for me to get the gluten out of my body, especially since I was so sensitive. Dr. D.S. wanted to see me again in one month, "but if you're not happy, come back in two weeks." He said to my mom. Since the DF (dairy-free) diet didn't appear to be working, Dr. D.S. said that I could go back on dairy!! I was so excited. Bring on the milk, real cheese, Ranch dressing, Nutella, and all other dairy products! 

 The tests came back showing that my thyroid was off. An appointment was made with a pediatric endocrinologist--a doctor who specializes in the endocrine (glands) system. My tTG came back great: my tTG before I went gluten-free was 22. Celiac patients need anything less than a 4, and my level came back at a whopping 1.2!! Gluten wasn't the obvious problem anymore so maybe it was my thyroid. I wasn't super thrilled about going to see another new and strange doctor, but I was thrilled about June finally being over. I could eat all the dairy I wanted, my gluten withdrawal symptoms were fading away, and I passed Driver's Ed with 95%!

TO BE CONTINUED!!!

I look so sick in this picture, but I love this shirt!

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!!