These two young, adorable kids that happen to have celiac disease are the whole reason for this blog. Our journey has not been easy but it has been worth it. Cliche yes. But it’s true.
I remember in May of 2015, my oldest daughter was at her peak with her undiagnosed celiac disease. She was consistently complaining of tummy aches, going to the nurse’s office at school often, not eating her lunch at school and barely touching dinner. She caught three different colds in a month. It was crazy. After about two weeks of consistent tummy aches, I brought her in to the doctor. I was sure it was just some weird virus but the doctor at the time (who was not her normal pediatrician) suggested we test for celiac disease. He was sure it probably was not that and was instead just a virus, I was positive it was just a virus, especially since there was no *known* family history.
The blood work came back a couple days later but had to be sent to an outside lab for further testing. At the time I just figured that was normal. When those results came back, we were told her numbers were pretty high and we had the choice to do an endoscopy and biopsy if we wanted to confirm the diagnosis. Since her blood work was so high, they said that we did not have to do the procedure if we did not want to. However, to be fair to her and to give her a definitive diagnosis that she could carry with her and never question, we went ahead with it. She was nervous as can be but we made the most of her time and the procedure was a breeze.
The result? Definitely celiac disease. In fact, the gastroenterologist could tell even without the biopsy. When the procedure was over, we set off for home to begin our new lifestyle. My husband and I decided that we would all go gluten free to make it easier. We were also told to have all four of us tested because usually someone else has it.
My husband and I tested negative (however I found out I do carry the gene) but our youngest daughter’s blood work tested positive. We were shocked actually. She really had no symptoms (that we would think were celiac) at the time. Looking back now, she did have symptoms, just not your typical ones. So our youngest did the biopsy and it was confirmed she also has it.
They symptoms both girls had were never “classic”. My oldest had severe belly aches that were never constant. They would come and go. We honestly thought it was gas or the fact she didn’t want to eat her broccoli at dinner. She caught so many colds and illnesses because her food was not providing her with the nutrients she needed because her insides were so damaged and her body could not absorb them. We even believe that as an infant she had signs…but since she had to be switched to a hypoallergenic formula (that did not contain gluten), she improved and we just thought it was something else (MSPI).
Our youngest also had severe belly aches but only twice. However, they were so severe and accompanied with an outrageous fever (105 and above), that the Emergency Room doctors just felt it was a virus and it would pass. However, the one thing that was a constant for her was that she had a rash for a couple years that we could never get rid of. We saw specialist after specialist and no one could ever figure it out. At one point she had about 8-10 doctors in the room staring at her rash (which is on her bottom) and no one knew what it was. They prescribed cream which would work for a tiny bit of time but it always came back. They biopsied it but only tested it for a staph infection. The only thing that made the rash go away was going gluten free. It was shocking to see it clear up once the gluten was out of her system! We learned the “rash” was the skin manifestation of celiac…dermatitis herpetiformis (DH).
I can honestly say that the diagnosis of celiac disease has changed our life. That is not a negative thing at all. I feel you can always look at any health issue as a negative thing and let it consume your thoughts and allow it to hinder your life…but it never HAS to do that. You have the power to NOT make it take over your life negatively and bring you down. I truly believe there is power in positivity. Again, cliche, yes…but SO true! This autoimmune disease has challenges for sure, but it is our way of life now. We get through the challenges just like any family would…together. It makes us courageous. It encourages us. It helps us grow. It teaches us empathy, patience and strength. It bonds us together. And for that…we are truly blessed.