Dear Nora,
The last several months have brought about some significant changes in our lives and I wanted to write to you about those here. Last summer when I took you for your yearly well visit, Dr. Batchelor noted that your height percentile had dropped from the 5th percentile to the 3rd percentile. She sent us with an order for a bone age study where you had your hand x-rayed. Daddy had periodic bone age studies growing up, so he was familiar with these. The x-ray showed that you had a bone age of 3, while your chronological age, of course was 6. With that information, we were referred to an endocrinologist. It took a few months to get an appointment with Dr. Araiza, so we saw her at the end of September. She recommended an initial blood test to check for all sorts of things that might inhibit growth, including growth hormone deficiency, thyroid issues, etc.
At our follow up one month later in October, she told me your celiac antibodies were "through the roof". This was shocking to me as you weren't experiencing any gi symptoms that would alert us to a problem and we weren't aware of anyone else in our family having celiac disease. Daddy and I visited with Dr. Batchelor over zoom about this because we hadn't felt great about the communication and experience we'd had with the endocrinologist. She did affirm we needed to explore the results of that blood test with a gi doctor and referred us to Dr. Alookaran, giving her a strong recommendation. So next, we visited with her and she said we really needed to do an endoscopy and biopsy to know for sure if you had celiac disease. On November 17, the week before Thanksgiving, we checked in at Memorial Hermann Hospital at 5:30am for your procedure. You were such a darling and sweet little patient. We put you in your little robe and socks, you received an IV trophy from the staff, got to work on your sticker book from Honey & Grandpa, and watched some shows on the ipad while we waited.
When they wheeled you into the operating room with us I sensed so strongly that God was in that room and He was the One in control. I knew He loves you even more than I do and He had you in his charge. Once all the medical staff descended on you and put on your breathing mask, you looked at us with fear in your eyes and they quickly whisked us away. We waited about 20 minutes, then Dr. Alookaran came to grab us and take us to see you. You were crying, and kept crying after we got there. You were just so out of it and wanted them to take the IV out of your arm. You told me later the IV was the worst part. They eventually got you a popsicle, then some apple juice, and you started to calm down.
Dr. Alookaran told us the initial findings showed celiac, but it wasn't the most normal presentation, so she wanted to wait for the biospy to be sure. We left the hospital within the hour and you quickly started to perk up as we were in the car and really by the time we got home. Aunt Holly wanted to buy your lunch, so we picked up macaroni and cheese from Chicken Salad Chick and you watched Frozen 2. You were enjoying the special treatment at this point!
When we were in Keller for Thanksgiving the next week, Dr. Alookaran called to confirm it was celiac disease and we should start the diet right after Thanksgiving. We were headed to Nana and Papa's on Thanksgiving Day and told you and Luke about the diagnosis in the car. Nana and Papa had bought several gluten free foods for us to take home from their house, including waffles, pasta, cookies, crackers, and it was so nice to be able to tell you right away that we had gluten free versions of those things you loved. It helped soften the blow. Friday night we already had plans to ride the Christmas train and pick up a pizza at Big Al's. I made the first of many calls like this and asked if they had a gluten free pizza. I was so pleased they did and you were delighted with your special pizza.
The first time I ordered groceries I cried through the process. It was just so overwhelming and I felt sad every time I saw something we frequently ordered just for you that you could no longer eat, like your favorite waffles and slider buns. The first meal I cooked for us was spaghetti, with two separate pots of pasta, one whole wheat and one gluten free. It took a lot of effort to keep everything separate and I decided next time maybe we should all eat the gluten free version! The second week was already a lot easier as I had to learn so many things quickly about checking labels and all the ingredients where gluten can hide.
Daddy kept reminding me it was a steep learning curve and would only get easier with time. Starting the diet around the holidays was especially hard. Birthday parties, Christmas celebrations, school activities... Conversations with a dietician, handling school dietary accommodations, updating allergy information... But we are making it! Right before New Years we had follow up blood work and later visited with Dr. Alookaran. Your numbers are still high (224), but previously they were higher than 250. We don't really know how high, so I'm hopeful that represents a good decrease that will only continue to plummet in the right direction.
Whenever people ask how it's going, I first tell them what an incredible attitude you have about it. When you were first processing it, you told me you wished you weren't allergic to gluten and that learning you were allergic to gluten was the worst thing that's ever happened to you in your whole life. So, it isn't that it's not a big deal and you don't grasp it. You know you will always have celiac disease. But, you have jumped on board so quickly and been so happy about all the new gluten free foods you've gotten to enjoy, like cupcakes, Annie's pasta (from Aunt Bonnie and Uncle Glenn), waffles, and oreos. When you realized the oreos in your Halloween candy bag had gluten you excitedly gave them to Daddy and me as an "early Christmas present." You are doing a great job as an early reader and love finding "gluten free" on packages. You haven't seemed sad about eating the gluten free treats I sent with you to school instead of whatever treats your friends have been eating for birthdays or special celebrations. At Christmas we ordered Joe's Pizza one day and you happily ate your gluten free spaghetti and chili at Honey and Grandpa's dining room table with us. Instead of complaining that you couldn't have the Christmas cookies, you were just thrilled to have Italian Ice and gluten free cookies Honey had found for you at Aldi. You have also been really careful about checking that the food you are eating is gluten free. I know I can trust you when I'm not there. I really am so blessed and encouraged by your sweet spirit about it all.
We are still very much on the journey of figuring this out. We will continue to do blood work and follow up appointments with Dr. Alookaran to monitor the numbers and hone our approach to your diet. At times it feels like an enormous burden, but there is also so much to be thankful for. I'm thankful we caught it when you were young and it appears that you haven't had it for very long. It should bear no lasting consequences to your health. I'm thankful it's a clear diagnosis that is completely treatable. I'm thankful that in 2022, gluten free eating is very common so grocery stores and restaurants have lots of options. I'm thankful you don't have uncomfortable symptoms that are making you feel sick. I'm thankful you understand and have accepted it so readily. I'm thankful we have the money to pay for all this medical care and special food. I know God is going to use this in your life for your good and for His glory. I have thought a lot of a friend of mine in college that had celiac disease. I remember asking her why she brought her own gluten free crackers to an RA dinner at Saga. That's the first time I ever heard of it and I remember thinking how difficult that must be. She was such a kind and humble person with the best attitude about it. That's what I see in you, at just 6 years old. I love you so much, little Nora, and I'm so proud of you!
Love,
Mommy
