Monday, August 1, 2016

Celiac Disease Diagnosis.

Quincy was not feeling well for months. She was constantly cranky, throwing up, diarrhea, losing weight at a scary pace, super bloated, sleepy, and lethargic. I originally thought she had a stomach bug. But once the "stomach bug" went on for weeks, I eliminated that option. Then I thought she may get car sick easy since she was throwing up every single time we got in the car. Then I assumed she as allergic to something so we took her off dairy and soy while we waited for our doctor's appointment. By the time we got Quincy to the doctor, she was pretty lifeless. She spent the majority of the day sleeping or just laying there. She refused to do the basic things a baby should do, like eat, talk, or crawl. It was a pretty scary feeling.

When we met with the pediatrician, he seemed pretty baffled. He ordered x-rays, blood work, and an array of tests in hopes of pin pointing a cause. I took Quincy to the hospital for the lab work and x-rays. Quincy was not a fan of being held down for the x-rays or to get stabbed multiple times in the arm. With the lab work, she was so upset and so tiny they really struggled getting her vein, which resulted in multiple pokes. I wasn't a fan either when I had to be the one that held her down. The hospital was great to work with and said they should have the results to the pediatrician by the next day so I would be hearing from them soon.


Well, I never heard from the pediatrician the next day. I kept calling and they said they would let me know when it came in. But I still didn't hear back, so I turned into that overprotective mom who kept calling and asking for answers.. Finally, I was told everything looked normal so the pediatrician would refer me to a specialist, a Pediatric Gastrointestinologist. The day before my appointment with the specialist, I ran back into the pediatrician office to get a copy of the lab results and x-rays. The pediatricians office let me know that the specialist just needed to call them during my appointment and they would send the results electronically. I was a little skeptical but the lady assured me that is how it is done in this day and age so I went along with it. I showed up to the appointment with the specialist and surprise, surprise, they let me know that it isn't common to get things sent online and couldn't even get a hold of my pediatrician to get the lab results. The doctor told me there wasn't much he could do without the results so the whole appointment was basically a waste of time. This was the point of the day that the mama bear in me really came out. I had a super sick baby that was acting like she was slowly dying. I just paid an arm and a leg for a worthless specialist appointment. And my pediatrician was proving very unhelpful. I was fuming.


I did the only rational thing at this point, I drove straight over to my pediatricians office while I was super pissed. I walked in with my kids in tow and demanded the lab results in my hand and faxed over to the specialist right then and there. I let them know I wasn't leaving until I saw them. The receptionist pulled up Quincy's file and then informs me that no results were in her file. I let her know that that couldn't be possible because I received a phone call where they verbally told me everything looked normal plus I stopped by the day before and they said they pulled it up and would just need the doctor to request is during my appointment. They back peddled, gave me a bunch of lame excuses, and ended up calling the hospital to request the lab work "again." When I had the lab work in my hand i realized the numbers were far from normal. So basically, the pediatrician's office lied to me multiple times. You best believed we are never seeing that doctor again....


Not long after the pediatrician faxed the results to the specialist, the specialist gave me a call. He let me know exactly what I suspected, the numbers were far from normal. He told me that the numbers made it very clear that Quincy had Celiac Disease. He said usually after a positive test result, they will request a biopsy but the numbers were convincing enough he wasn't even going to bother. With her Celiac Disease Panel, her IgA numbers were 234. A normal person would range from 19-102. Her tTg IgA were even more alarming. Her numbers came in at >100. A normal individuals numbers would be 0-3. Those numbers were enough to convince me and I was pretty relieved to not have to go through a biopsy.


With Celiac Disease, Quincy has had to adjust to a completely new lifestyle free of anything containing gluten. This was really hard at first, especially because her favorite foods were goldfish, cereal, mac and cheese, and sandwiches. We opted to make the switch as a family. It seemed easier so we could avoid any cross contamination and prevent any unsafe foods from accidentally getting digested. Now that we have had a diagnosis for a couple of weeks, it has been amazing to see the difference in Quincy. She used to be lifeless and sleep for the majority of the day and now she is happy and catching up developmentally. She finally expressed some interest in walking and talking and being a normal toddler. As heartbreaking as it is to have to go through the process, I am so relieved to finally have answers and have my happy, smiling baby back.


This is how Quincy looked 99,9% of the time, lifeless.
My poor baby :(
At the hospital getting lab work.

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