Where My Demons Hide: My New Battle

May 2015

Hello friends and blog followers! It's been quite a while since I last posted on here; I've been busy! Here's a quick update before we dive into this post:

I just finished a great first year of college! I am studying Dietetics and Child, Adult, & Family Services, and I absolutely love it. I've met some incredible people and learned a lot. It took me a while to adjust to living away from home, but I finally got the hang of it. I'm already excited for the Fall 2015 semester to start!
    I had the opportunity to go across the pond to England over spring break with my English class. I had so much fun! England has so many gluten-free options, and I didn't even get "glutened" on the trip. My class and I went to Exeter (southwest England), Dartmoor, and London. It was amazing to see all the famous landmarks that I've dreamed of seeing since I was little. This trip was very triumphant for me; I was able to prove to myself that my health can never hold me back from doing anything.

    I'm spending my summer working at a hospital as a Diet Clerk. I really enjoy my job, and I like the hospital environment. As morbid as it may sound, I feel so comfortable being in the hospital and around sick patients, doctors, and nurses.

So that's what I've been up to since my last post. Now to the actual reason why I'm posting. Most of you have read my previous posts and/or are familiar with my very long health history. Writing this blog was a therapeutic way to accept what was happened to me and learn to appreciate all the blessings that came from it. If anyone is reading my blog for the first time, a quick overview is: celiac disease diagnosis in 2011, gall bladder removed in 2011, trip to hell and back (a.k.a University of Iowa hospital) in 2012, hospitalized in 2012, diagnosed with IBS and gastroparesis in 2012, healthy in August of 2012, sick again in April of 2013, diagnosed with gastritis in 2013, and healthy again in September of 2013. That's a lot of time spent not feeling well, hanging out with doctors and nurses, tests and procedures, and a lot of health conditions to manage. A completely reasonable question to ask would be, how did you cope with all that?! All my strength and energy comes from God, and I put my trust and life in His hands all the time. God has blessed me with supportive family members and friends who have helped me survive. He has also given me the best medical team anyone could ask for. He has given my doctors and nurses wisdom and compassion to help me overcome and live with all that I have. Even though I do have four chronic digestive disorders, I feel well probably 80% of the time. So why am I posting on here again? What else could I possibly have? Well, it turns out my current health struggle isn't a physical struggle.

After spring break, I began to notice some unusual symptoms that I naturally matched up with what was going on in my life. Fatigue. College is exhausting, but I felt more fatigue than usual. I dismissed this as returning from the trip of a lifetime in England, taking organic chemistry, and heading towards the last month of freshman year. Joint pain and muscle aches. I was running up to four miles, but minor injuries over time caused me to not be able to run as far anymore. I had twisted my ankle running and didn't let the injury heal properly before running again. That caused minor knee problems. Once again, I didn't rest and got shin splints. Weight gain. With gastroparesis, I feel no hunger and I feel fullness quickly. Because of this, I don't really eat that much. Add in my very active lifestyle and you get a skinny girl. Nothing had changed with my diet or lifestyle but yet I was constantly gaining weight and my clothes weren't fitting the same. Constipation. I like to keep this blog as honest as possible so sorry if constipation isn't your favorite topic. Due to IBS and gastroparesis, I drink a good amount of Miralax every day, but I noticed that the amount of Miralax I drank was getting outrageously high, over 50 ounces a day. Mood swings and sadness. I easily dismissed this symptom as a result of the fatigue, not being able to run, and all the frustrations that come with college classes.  I was also experiencing a gastritis flare which made the fatigue even worse and my stomach hurt every time I ate. How did I handle all this while attending classes, keeping up with homework, and studying for finals? Once again....God.

When the semester ended and I was finally able to decompress at home, the symptoms seemed to get worse. Of course, who wouldn't be exhausted after their first year of college? Who wouldn't feel sad because they missed their friends from college? I kept telling myself that this was all normal, and there was nothing to worry about. Meanwhile, my mom was keeping track of the symptoms I had reported to her and was looking on the Mayo Clinic's website. All the symptoms in bold above matched perfectly with the symptoms for hypothyroidism--a condition where the thyroid gland doesn't produce enough hormones. I have been seeing an endocrinologist since the summer of 2011 when my first pediatric GI doctor did blood work to determine why I wasn't feeling better. My thyroid levels have been on the low side of normal but nothing to worry about. Hypothyroidism runs in my family and is common in people with autoimmune issues, such as celiac disease. I just so happened to have a check up with my endocrinologist coming up. I was starting to feel miserable. The fatigue and sadness were really bringing me down. I had lost interest in doing anything; I just wanted to lay in bed. The appointment finally arrived and I presented all my symptoms to my doctor, who ordered seven blood tests. My mom and I anxiously awaited these results. We had already self-diagnosed me with hypothyroidism and now we just waited for the blood work to confirm our diagnosis. The blood work came back the next day but was a major shocker. Everything was normal. No thyroid problems whatsoever. I immediately started to freak out because I figured there was another worse problem. WebMD came up with lupus, fibromyalgia, and the plague, just to name a few terrible diseases. My mom made an appointment for the next morning with one of the pediatricians who helped me when I was sick. My usual doctor, Dr. S., was on vacation but Dr. El., another great doctor in the same practice, could see me. I went to the appointment expecting a few hours of blood work, x-rays, and who knows what else. After all, lupus or fibromyalgia would probably be tricky to diagnosis. Dr. El. went over the blood work from the endocrinologist, asked a series of questions, and did a physical exam. When he said that he wasn't going to do any more blood work or tests, I didn't panic because he's so thorough that I knew I could trust him. Dr. El. then explained how the symptoms I had been having were also the same symptoms for low serotonin levels. Serotonin is a chemical in the brain that helps with moods/happiness. The more Dr. El. talked, the more and more I realized what I had been struggling with some mid-March. I finally realized the emotions I had been struggling with weren't normal. It wasn't normal to cry for no reason in your room for two hours. It wasn't normal for something totally random to make you burst into tears. It wasn't normal to feel so much anxiety that you can't breathe when someone doesn't text you back right away. While sitting in exam room with my mom and Dr. El., I finally felt relief. I couldn't stop the tears from coming. I wasn't crazy. There was nothing physically wrong with me. Dr. El. explained that depression and anxiety is very common in people with a history of GI issues and "responsible students". Dr. El. prescribed an antidepressant that is commonly used to treat depression and anxiety. He warned me that I could endure 7-10 days of feeling worse before I could feel better, and it might take anywhere from 2-6 weeks to start seeing a difference in how I felt. I'll skip the fascinating science of the medicine and get right to the main point: I was diagnosed with depression and anxiety on May 21, 2015. I am depressed.

The medicine is being a pain in the butt as it is making me feel worse. So far I've woken up with anxiety attacks twice, had anxiety attacks throughout the day multiple times, feel like crying more, lost my appetite, feel dark inside, and feel even more tired than before. These anxiety attacks are really starting to take their toll on me. Describing one of these moments is difficult to put into words. During an attack, I often feel very shaky, scared, and helpless. My stomach is instantly upset, and I feel like throwing up. It's hard to focus on anything, even though I try to force happy thoughts into my mind. Sometimes one of these attacks is brought on by a thought about the future, but most of the time it happens for no reason. It's always worse when I'm alone and don't have anyone to distract me or calm me down. Occasionally the feelings will fade as quickly as they were brought on, but other times some of the feelings stay with me for the rest of the day. Tomorrow marks one day on this tiny white pill that makes me miserable, and I can only pray that I will start to see some improvement soon.

I do not like the label of being "depressed". I prefer to call it chemically challenged because that is actually what is happening inside my brain. This depression and anxiety isn't my fault; it's basically a side effect of my digestive issues. I definitely do not like the social stigma that goes along with not just depression and anxiety but any other mental health issue. When you think about it, the only difference between depression and celiac disease (or any other disorder I have) is where in the body something isn't right and what it affects. Our society acts as if depression and anxiety are unspeakable when in reality it's common. I may not want to openly discuss this new health issue at the dinner table because it can be difficult to accept and understand let alone talk about it. However, I wanted to write this post for several reasons:
1) Therapeutic: as I said earlier, writing this blog really helped me recover mentally and emotionally from everything that happened to me with my health, and my hope is that writing this post will do the same.
2) Knowledge: I feel like I'm hiding a dark and dirty secret sometimes by not talking about this diagnosis. While I would prefer to not discuss it in depth in person, I do want to be 100% honest whenever I can be.
3) Awareness: depression and anxiety are more common than people think. Everyone has heard of it but knowing someone with it brings it closer to home.
4) Prayers: if you're reading this and feel inclined to do so, please pray for me. This is not going to be an easy battle to fight, and I definitely can't do it alone. I have seen nothing but support and love from my family and friends, and I am beyond grateful for that.

Thank you for taking the time out of your day to read this,
Sarah 

January 2012: Crappy New Year!

January 2012



Uncle Mark comes!

While most Americans were starting their New Year's Resolutions of eating healthy, losing weight, working out, etc. I woke up on New Year's Day feeling worse than I had when I went to bed on New Year's Eve. My entire body ached. My headache was horrible and my stomach was very upset, but every single muscle in my body was hurting. I felt like I had been beaten with a baseball bat. I was taking Tylenol every six hours, but it was doing nothing to help my symptoms. I wasn't able to babysit or go to the first drama practice that our home school group was hosting. On the plus side, my dad's brother from Wisconsin had come for the Iowa Caucus!
 Finally, on January 5, my mom took me to see my pediatrician, Dr. S. I hadn't been to see him since April of 2011 when he referred me to the pediatric GI doctor who diagnosed me with celiac disease.
 Let's review my current symptoms: headache, no taste, chronic stomach ache, and body aches. I still wasn't excited about going to the doctor, but I was desperate. The looming date of my appointment in Iowa City was getting closer, and I needed a miracle. When I met with Dr. S., he seemed surprised to hear that I was still struggling with my health. Being my pediatrician, he had read notes from my two pediatric GI doctors, surgeon, and endocrinologist. Dr. S. introduced us to his new laptop that he had to carry around with him. He showed us how he had to update all of my medical history (you can probably image how long that took) and list any present symptoms. Dr. S. mentioned several times how much he hated his new computer; it made the appointment very humorous and enjoyable. If he didn't carry his laptop around with him, he would be charged $50,000! This computer was an obvious problem: apparently "loss of taste" isn't listed in the computer's database of possible symptoms. So Dr. S. pulls out his iPhone and gets on one of his doctor apps to find the medical term for loss of taste. Just in case you're interested, it's ageusia. After Dr. S. satisfied his computer, he told me that he was going to test me for 11 different conditions: mono, strep, flu, walking pneumonia, B-12 deficiency, zinc deficiency, CPK, parvo B-19, sedimentation rate ESR, rheumatoid arthritis, and ANA. I have no idea what about half of those things are, but if anybody with medical knowledge out there is reading this, you might. I was hoping one of the friendly lab techs in Dr. S.'s office could get all these swabs and vials of blood, but their lab was only able to handle the basic tests. Blood was drawn for mono, walking pneumonia, and a basic CBC. Even though I had already had mono, Dr. S. still wanted to check just in case. A strep swab (GAG!) and a flu swab (how I would imagine it feels to be mummified and have one's brains pulled out through their nose) were also drawn. After a while, the in-office results came back. They were all negative. Two samples of the walking pneumonia, strep, and flu were taken and the second sample would be sent to a different lab for confirmation. Next, Dr. S. sent me over to the draw room across the street at the main hospital building. A very small and cramped room, the draw room was occupied by a screaming baby and me, separated with a curtain. Six vials of blood were drawn for the rare conditions that I was being tested for. After being poked and prodded, I was sent home. It was a beautiful day: 60 degree weather on January 5th in Iowa! I desperately wanted to walk around the lake, but I was not feeling up for it. My mom offered to push me around the lake in a wheelchair (ha!), but there was no way on this earth that I would ever consent to that. I could only imagine the looks I would get. In addition to feeling awful, I had to start eating more again. My weight had dropped to 116 pounds, a 37 pound decrease from my pre-sick weight. I downloaded the WebMD app on my iPod and started researching what I was being tested for. A B-12 and zinc deficiency made perfect sense to me. Symptoms included loss of taste, body aches, weakness, loss of appetite, nausea...pretty much every symptom I had!. I had a small glimmer of hope that we had found the answers, but I was wrong. All the tests came back either negative or normal.
I was finding it very hard to cope with the amount of pain my body was in. My mom had to replace my heavy quilt with a lighter blanket because the weight of the quilt was too much. I was also so tired. I took an hour long nap every evening at 5:00. If I didn't nap, I just rested my exhausted and weak body. I tried to update my daily journal, but it hurt too much to write. However, I was going stir-crazy in my house so I slowly dragged myself around the block to get some fresh air. The next day was Sunday, and I was in church with my family when my mom's cell phone rang. She quickly rushed out of church to answer it and came back to tell me that somebody from Dr. S.'s office had called and the second sample for walking pneumonia came back positive! I immediately started the famous "z-pack" that is commonly used to treat walking pneumonia. I was optimistic that this medicine would take away the pain, headaches, and maybe even that chronic nausea...I should have known better. The z-pack is known to take symptoms away immediately, and I was not having any immediate results. Two days later, we got a call from Nurse T. at Dr. S.'s office. She told us that Dr. S. had thought of two more things to test me for: my cortisol levels and Lyme's disease. On the same day as this blood was taken, I had another follow up with Dr. C., my endocrinologist. Dr. C. didn't think any of my current symptoms were related to my thyroid, but she drew her usual lab work anyways. My veins were in very bad shape. Two phlebotomists poked for probably 15 minutes until finally they were able to get the minimal amount of blood needed. My mom said that I was a very unnatural shade of gray during this process. My arms hurt so bad, and they were terribly bruised. The inside of my elbow and about halfway down the inside of my forearm were a nasty yellowish color. Two days after seeing Dr. C., I had another follow up with Dr. S. He had just learned that the Lyme's disease test came back positive! I had heard of Lyme's disease, but I wasn't exactly sure what it was.
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Lyme's Disease: a tick-borne illness, the usual symptom of Lyme's disease is a rash. Other common symptoms are fever, chills, aches, weakness, and headache.
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Ticks already completely gross me out, but now I despised them even more! Had a stupid infected tick really caused me all this pain?! Dr. S. immediately called a pediatric infectious disease specialist at the other hospital, Dr. Casta., who could see me in about an hour and a half. I was very overwhelmed, confused, and worried. As my mom and I left Dr. S.'s office, he reassured us that "we will get everything straightened out." We quickly dashed home, stuffed down some sandwiches, and then drove back downtown to the other hospital. On the way to the hospital, I noticed a billboard advertising the hospital with a doctor playing with a little boy on it. I thought it would be funny if I saw one of my doctors on a billboard. At Dr. Casta.'s office, a very nice nurse called my name and took my vitals. She was so nice and funny. She asked very detailed questions about where I had traveled in the last five years. I told her about the cruise I went on in 2010 and going to Wisconsin a little over a month ago. She said that Lyme's disease can sometimes have a "false positive" in the blood test, but Dr. Casta. could tell us more about it. Shortly after she left, a very familiar looking doctor walked in the exam room. I then realized that I was looking at the same doctor who was on the billboard! Dr. Casta., who is from Peru, was very nice. He said that the blood test isn't very accurate, and the loss of taste, nausea, and weight loss probably wasn't from Lyme's disease. Wisconsin, where I had a blast shopping, is one the most common states for Lyme-carrying ticks. Dr. Casta. told me that he was going to talk to some of his colleagues at the medical school where he trained about me.
"I'm going to be thinking about you." Dr. Casta. said with a smile as he sent us down to the lab. Another six vials of blood were drawn, checking for CVID disease, HIV, connective tissue cascade, T&B cell, and a CBC. As if I didn't have enough going on, I also had an orthodontist appointment on this same day! One day, three doctors, six hours.

Ouch :(

Here is a short recap for you: in one week, I had 15 vials of blood drawn and I had seen four different doctors. I was completely exhausted. Even though I had been tested for 17 ailments, poked with needles, and touched by doctors, I was still very sick. My sister's boyfriend said it best: "She is a sick little girl." My only hope for not going to Iowa City rested with Dr. Casta. Maybe he would find the missing piece of the puzzle in the blood work or maybe one of his colleagues would come up with something.
 About a week later, the nice nurse from Dr. Casta.'s office called. All of the blood work was normal. The only thing left was for me to go to Iowa City on January 23--six days later. I was completely crushed.should have been. As for the loss of taste, it was suggested that I see an ear, nose, and throat (ENT) specialist. I went to our family's regular ENT who noticed that my nose was stuffed up with a lot of mucus and inflammation. The ENT prescribed the steroid Prednisone to get rid of the inflammation and the nose spray Afrin for five days. He was confident that those two treatments would clear my nose up quickly. The appointment with the ENT was on a Friday, and the following Monday was my appointment in Iowa City. For the whole weekend, my mom was determined to keep me busy so I wouldn't think about the appointment. My grandparents were sweet enough to send me flowers and a stuffed teddy bear to take with me to Iowa City! I spent the weekend reading, doing Sudoku puzzles, knitting, painting pottery at Glazed Expressions, and crafting. My mom and I went to see "The Iron Lady", a film about British prime minister Margaret Thatcher, and we also watched Downton Abbey on Sunday night. The weekend was fun and went by way too fast. As I laid in bed on the eve of the appointment in Iowa City, I didn't know what to expect. Way back in October, when my GI doctor suggested that I keep the appointment, it was decided that any further testing that the doctor in Iowa City wanted to do would be done in Des Moines. The appointment in Iowa City should be a meet-and-greet with the doctor, getting his opinion, and following his plan of action. That is what it

TO BE CONTINUED..............

A sweet surprise from my grandparents!

April 2011: Friends to the Rescue, Wills & Kate, & A G.I. Doctor

April 2011

Singing with Diana & Joanna!

April 1, 2011, brought the exciting arrival of our former neighbors from Michigan. The L. Family was visiting their grandparents who live next to us. My sister and I grew up with the L. Family's two daughters, Diana and Joanna, who are about the same age as us. It was great to see them again, and all the girls had a blast getting caught up. The L. Family came on a Friday and planned to leave the following Tuesday. The weekend was full of hanging out, talking, laughing, and eating. Ethnic food was on the menu several times, and the women of the L. Family know how to cook! Delicious feasts of pot stickers, fried rice, and other Chinese foods were prepared. It was all so yummy! My stomach didn't agree with most of the foods, but once again I blamed the salt from soy sauce as the cause. I pushed past my stomach ache and enjoyed watching the Harry Potter movies with Diana and Joanna. We also recorded ourselves singing an over-the-top version of Katy Perry's song, Firework. I still have the video on my iPod, and it always makes me laugh until I cry when I watch it. My mom treated Diana, Joanna, and myself to an afternoon showing of the  movie Rango. We were the only ones in the theater so we laughed and talked as loudly as we wanted. I had fun, but I was feeling awful. My stomach was so upset, and I felt exhausted. Dinner that night consisted of another Chinese meal that didn't sit well. I hardly touched any of my food. I babysat that night, and my stomach felt just as upset as it did when I had c.diff. I was too tired to think of what the problem was this time. I had a suspicion that it wasn't just the spices in the food.

 The next morning was April 5, and I woke up thinking about a lot of things. Today my brother, Daniel, turned 22 years old. I should remember to text him. The L Family was leaving today. I'm going to miss them. I've had so much fun with the girls. As I sat up in my bed, I reached across my bed to pet my cat, Oliver. I had just started petting him when a horrible sensation came over me. I had experienced this before, and I knew what was coming. I quickly got out of bed (which startled the still-sleepy Oliver) and raced to the bathroom. October, 2010, repeated itself again. Even though I hadn't been eating much, a whole lot of something came out of me all at once. I couldn't believe. I just knew I had a c.diff relapse. When my business in the bathroom was finished, I went back to my bed and laid down next to Oliver. I considered facing the facts of c.diff again, and it was too much to handle. I started to cry as Oliver started to purr. My mom came upstairs to get ready for the day and was surprised to see me crying. I told her what happened, and that I knew I had a c.diff relapse. My mom immediately jumped into mom mode and calmed me down. She decided to do some research while I rested on the couch while doing some easier school subjects. The more I thought about it, the more I was convinced I had c.diff again. After my mom finished her research, she informed me that c.diff usually relapses two months after a person is first exposed to it. 

"That means you have the flu." My mom said confidently.
"Not if I was exposed to c.diff again." I added.
I can still remember my mom's eyes growing wider when I brought up this point. We decided to wait and see what the next couple days brought before we freaked out. I had already diagnosed myself with c.diff. I knew right then and there that I was done volunteering. I would miss spending time with my volunteering partner, J, but I was not going to put up with that hospital's sloppy germ control skills. There was a very weird factor in all of this: when I got c.diff in October, I volunteered on a Thursday and woke up with diarrhea on a Tuesday. This time I volunteered on a Thursday, and woke up with diarrhea on a Tuesday. Was it a creepy coincidence or was the time frame for c.diff symptoms to show up five days?

Flowers from Jonathan

 The next few days brought more diarrhea and a loss of appetite. I was back on my diet of 7up, grilled cheese, quesdillas, instant potatoes, pudding, and other bland foods. I could not believe it. I was so close to reaching my pre-sick weight, and now I was going to lose more weight. I had an appointment for my next (it was also supposed to be my last) weight check at Dr. S.'s office on April 7. We called to ask if we could see Dr. S. while we were there. I clearly didn't have the flu so that meant there was only one other thing it could be: c.diff. You've probably heard of the phrase, "to know when you're beaten". Well, I was beaten.  I was dreading my appointment with Dr. S. I had visions of myself breaking down and crying right there in the mustard yellow exam room. My sister, Rachel, and her boyfriend, Jonathan, had both texted me the day of the appointment. I was obviously run down and hopeless. Sweet Jonathan brought me yummy chocolate chip cookies and flowers. Rachel got a good one! :P

 I walked in to Dr. S.'s office with my mom as ready as I was ever going to be. The shock of getting sick again had worn off, and now it was time to face the truth. We had to wait almost an hour to see Dr. S. He ordered some blood tests (including a test for celiac pronounced "seal-e-yack") disease-the disease where you can't eat any wheat), a urine sample, and a stool sample. The blood and urine came back normal so all that was left was that lovely stool sample that could determine 15 more days on metronidazole, an awful taste in my mouth, and more havoc on my already fragile stomach.

"We'll see what the stool sample says and then see if you need to take that great tasting medicine again!" Dr. S. cheerfully said. It was impossible to be in a bad mood around him! Dr. S. also suggested that we make another appointment to see the same pediatric gastroenterologist that I was supposed to see in January. Dr. S. said there were often waiting lists for these kinds of specialists. An appointment was made to see Dr. D.S. on April 29. 

Art class fun with T.

 Within the next couple days, the sample was shipped off to the lab. To be myself busy, I had a sleepover with Rachel at her college dorm. We had a blast! I experienced cafeteria food (everything was so salty), watched MTV, and stayed up late. I had so much fun that I forgot about my stomach troubles for a while. I also distracted myself by attending an art class that was open for high schoolers in our home schooling group. I had been messaging my best friends, Elizabeth and T., on Facebook and telling them about my latest stomach problems. They were sympathetic and told me that they were praying for me. Both girls were surprised and happy to see me at art class. All the students had to participate in gym class, and gym usually involved some amount of running. I didn't feel up to running so I walked behind everybody else. T. was nice enough to walk with me. I skipped gym for the rest of the class and helped another teacher manage her pupils. T. also accompanied me so I wouldn't be the only person skipping gym class. 

 About one week after my appointment with Dr. S., the results from the stool sample. My heart was racing as I tried to listen in on my mom's conversation with Dr. S.'s nurse, Nurse T. After my mom got off the phone, she had good news and bad news. The good news was that I did not have celiac disease! I then braced myself for the bad news that I had c.diff. I would never have expected the news: the lab refused to check for c.diff. My sample was not in diarrhea form, and the lab had changed their protocol since last November. All stool being checked for c.diff had to be in diarrhea form. I was so mad! Was I just supposed to let the c.diff toxins build up in my body? I was learning about bacteria in biology at the time, and I knew enough to be terrified of the possible bacteria that was in my body. There was absolutely nothing we could do. I wanted to sue the lab for changing their protocol and not telling Dr. S. My mom was also mad and called my grandpa to tell him. My grandpa had taken an interest in my recurrent stomach problems. Both him and my grandma were concerned. I told Elizabeth and T. about the stupid lab, and they were both mad. I wrote that I was ready for all of this to be over, and Elizabeth told me that she was ready for it to be over also. T. said that she was getting frustrated by just reading my messages. I could tell they were both getting worried. Nurse T. suggested we submit another stool sample and see if the lab would test for c.diff. We had no luck. The strange thing was, three other stool samples were submitted to be tests for c.diff, and those samples were not in proper form so they were not tested. At least I wasn't alone.

 I tried to stay busy as I waited to see the stomach doctor on April 29. I was still convinced that I had c.diff. I didn't know what else could be wrong. I had a gut feeling (no pun intended!) that whatever the problem was, it was going to take a while to fix it.

Watching the Royal Wedding at 3:00 am!

  As much as I was dreading April 29, I found myself looking forward to it for other reasons. The Royal Wedding of Prince William to Kate Middleton was on that same day! I made plans to get up at 3:00 a.m. to watch the wedding live from London. My mom and Rachel were going to join me, and we made tea and scones. I have always been interested in all things British. My grandma is also interested in the monarchy, and my dad's mom (she passed away before I was born) was also interested in the monarchy. I'm not sure how I came to like England, but I always have and I am British at heart! 

 The Royal Wedding was beautiful; well worth getting up so early! Kate looked so beautiful. I forgot about seeing a stomach doctor as I sipped my tea, nibbled on my scone, and gawked at all those British hats. After the wedding was over, I got ready to see Dr. D.S. Erika, the mom whose kids I watch twice a week, called me to wish me good luck at my appointment and that she was praying for me. Erika had seen me go through mono and c.diff, and she is naturally so caring and kind. 

 I didn't know what to expect as I walked into the hospital where Dr. D.S.'s office was. His office was located in the same hospital where I used to volunteer. My mom had e-mailed the volunteer coordinator telling her that I was being tested for c.diff again and that I was not going to volunteer anymore. I was so worried about running into somebody who I used to work with at the hospital. My mom checked me in with a nice receptionist, and we filled out some paperwork. Shortly, a nurse called me back and took my vials. The office was very small and seemed crowded. The exam room looked like a regular exam room in a doctor's office. After waiting for a little bit, there was a knock at the door and the pediatric gastroenterologist came in. He was a very, very short man probably in his 50's. He had gray hair but not a lot of it. He introduced himself and then told me to sit on a chair by my mom. He asked a lot of questions. Some questions made sense and others did not. No, I've never tried to lose weight. No, I've never been on a diet. No, I don't think I'm a high maintenance. That was seriously one of the questions he asked. What do I want to weigh? I don't know! Whatever is average. Are you seriously asking how many times a day I go to the bathroom?! Who keeps track of that stuff? Ugh, this is so embarrassing. I want to leave. I wasn't sure if I liked Dr. D.S. or not. He seemed quirky but nice. The physical exam he performed still confuses me. In addition to the regular physical exam, he also took a really good look at my feet and hands. Yes, feet and hands. While he commented on my toenail and fingernail polish, I was silently wondering why I even bothered coming to this appointment. Dr. D.S. asked me to lay down on my back while he felt my stomach. He then started tapping on my stomach while asking if I liked being tall. I told him that I didn't like it. He then launched into a story about a girl from China who was very tall, and she had surgery to cut out parts of her legs so she would be shorter. When she woke up the next morning, her arms drug on the ground! I politely laughed. Dr. D.S. immediately switched gears told me this: "I think you have celiac disease." I almost laughed out loud. Here we have this slightly bizarre stomach doctor, who looks at feet and tells stories that are probably made up, telling me that I have a disease that I had already been tested for...twice! 

"I've already been tested for that!" I protested.

 Dr. D.S. nodded and asked me to sit down again next to my mom. He then explained that the blood test for celiac disease had five panels. In my case, only two panels were elevated. Dr. D.S. told us that if even one  panel was elevated, there was a 97% chance of having celiac disease. All my symptoms pointed to celiac disease. I was trying my hardest to block out what he was saying. This could not be happening to me. Unfortunately, things got worse. The only way to confirm that I had celiac disease was to do an endoscopy. I didn't know what that was so Dr. D.S. told me that a small camera on the end of a flexible tube was going to be stuck down my throat and into my stomach and the first part of my small intestine. I would have medicine through an IV that would cause me to fall asleep and not remember anything. Some biopsies of my esophagus, stomach, and duodenum (the first part of my small intestine) would be taken and sent away for testing. Dr. D.S. said that the only treatment for celiac disease was a diet that was free of something called gluten--wheat, rye, and barley--for life. Also, my parents and siblings would need to be tested for celiac disease due to a 20% chance of them also having it. My head was spinning. There were so many things to absorb and think about. When Dr. D.S. left the room, I burst into tears. I was absolutely terrified. I didn't like or trust the doctor, I wasn't comfortable with a tube being shoved down my throat, and I hated the fact that I might never be able to eat wheat ever again. A nurse came in and scheduled my endoscopy for May 2. On the way home, my mom called my grandpa and dad to tell them about the appointment. I sat in the passenger seat and thought about never eating cake, cookies, brownies, Papa Murphy's pizza, bagels, and Applebees ever again. I thought about going on a vacation, going to college, and going to my aunt's house. Could I just pick the bun off the hamburger? What was I supposed to eat? When we got home, my mom told me that she had decided that the whole family would go gluten-free. I told her they didn't have to do that for me, but my mom was firm on her decision. If I couldn't eat it, then nobody else could. I was upset and down in the dumps when I got home. I couldn't bare to think of what was ahead of me. My mom felt like she was poisoning me at every meal because there was wheat in everything we ate. As much as I tried to convince myself that the stomach doctor was wrong, I had a feeling that he was right. Dr. D.S. was recommended by Dr. S., the doctor who was never been wrong. I knew Dr. D.S. had to be a really good doctor if Dr. S. suggested I see him.

 I had three days to prepare for the endoscopy and the results that would follow it. I received a lot of support and prayers from my dear friends, Elizabeth and T. Elizabeth told me that a lot of people on her mom's side of the family have celiac disease. My mom found a box of gluten-free communion wafers at church, and we went to our local Hy-Vee grocery store to check out their gluten-free section. I desperately wanted to feel better, but I did not want to give up gluten.

TO BE CONTINUED!