Abby has always been a kid that feels everything through her stomach. She is excited, she gets a stomachache, she is nervous, sad, worried she gets a stomachache. I always joked that if anyone in the entire school had the stomach bug that Abby would catch it. Putting all these pieces together now, it all makes sense.
Abby had been waking up at 2-3 in the morning most nights crying of stomach pain. She also was wanting someone to lay with her to go to bed each night. At the time I thought she was scared to sleep in her room all of a sudden and that she was nervous about something going on at school. Whenever I tried to ask about what she was nervous about she would say that school was fine and that she wasn't nervous, her stomach just hurt. This went on for almost 2 weeks of her never sleeping good and having dark purple circles under her eyes. It finally got to a point where I made her an appointment because I was worried about appendicitis or if nothing was physically wrong she needed to talk to someone to figure what was going on. She saw Becky at Dr. David's office and they did blood work and an x-ray. The first round of blood work was normal, she didn't have a UTI or any issues on the x-ray but the next day Becky called me at work to tell me that her markers for Celiac disease were extremely high. I was shocked! First of all that was not on my radar at all and I didn't realize that they had run blood work for that. Evidently the level should be less than 0.5 and Abby's was 156. Yikes! So our next step was a GI consult.
I work with the Pediatric GI at St. E's so I just called them up and tried to get her in as soon as possible. The soonest the office would schedule her was for a month out and she was already so miserable. There aren't a lot of perks of being a nurse but this time working with them paid off and I got her an appointment for the next Monday and she would have her upper endoscopy on Friday. Looking back this was all such a blur and I didn't cope very well with it. I knew that a celiac diagnosis would change her whole life and make things very complicated at times. I cried a lot when she wasn't looking because I didn't want this for her. I didn't want her to have to deal with this. It was a long week waiting for our appointment so that we had a for sure answer.
She had her upper endoscopy at St. E's so it was the people that I worked with taking care of her which put me at ease. I knew that the procedure itself was quick and easy and that she wouldn't remember any of it. She was a champ and was just a little loopy when she came out of anesthesia. I had to go back to work afterwards but Robb stayed home with her for the day and she was running around outside a couple hours later.
When she left that day, Rose the PA, told us to start decreasing the amount of gluten she was eating to see if it helped. By the next week we had our official diagnosis that she for sure had celiac disease. She would have to eat strictly gluten free for the rest of her life. The first couple months we learned a ton and I could probably have a minor as being a dietician. We had to replace all of our wooden spoons, plastic bowls and containers, non stick pans and cutting boards. We transitioned to all stainless steel and gradually started finding substitutes for her favorite items. She had to start taking a lunch to school everyday and we gradually transitioned all of our family meals to gluten free. Abby handled this with so much grace I can't even tell you how proud we have been at her attitude about all of this! Caleb has been the only one to really push back on going gluten free. He thinks he hates it if it is gluten free. We have found some really great substitutes it just increases our grocery bill by 50% or more. We still keep some gluten free snacks in the house for the boys but most of the other food is gluten free. All of the kids had to have blood testing done to see if they also had it and Robb and I were also tested. Everyone else came up negative for now but Robb carries the gene so it is a possibility that at anytime he may develop an intolerance or any of our kids that also have that gene. I finally had to stop feeling sorry for our family and Abby and realize that this sucked but it was an illness that we could manage with a change in her diet. We could keep her healthy just by feeding her the correct foods. That was what really help put things in perspective for me.
