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!