McCartney, now 6, was diagnosed with Celiacs in March 2022.
When she was just a small baby, she had a distended stomach. It usually would go down after a bowel movement, so I figured she was just a “pot belly” baby. Being that she’s my first, I had no idea that was our first red flag.
McCartney was a little over 3 when we started potty training. All this time her “pot belly” remained and I didn’t think too much of it. While potty training, her belly became so round and distended it really worried me. So, I took her to the doctor and they did some x-rays and said she was extremely backed up with stool. I thought it was odd because she was having regular bowel movements, but figured since she was potty training, she wasn’t getting it all out. The doctor said to give her daily Miralax to help clear her system. This helped a bit with the tummy swelling, so again, thought it was normal. She was on Miralax daily for a year before her bowel movements became too watery for the Miralax.
Finally, the December she was 4, I took her in because she had been having diarrhea for a solid two weeks. No vomiting, but just diarrhea and the distended stomach. When the doctor said it was likely a virus, I felt nudged to ask for an allergy panel. Our doctor was great and agreed and added a Celiac panel to the test orders.
Getting a blood draw from a 4-year-old is brutal! After many pokes and tears and even having to return to the hospital after try one (didn’t get enough blood the first time), I wrapped my body around hers and we finally got enough blood to do all the tests.
About two weeks later, the nurse called and said she had a “clinically insignificant” dairy allergy, but the Celiac panel hadn’t come back yet. Every few weeks, I called back and they still didn’t have the Celiac results. By the first week of March (my daughter now 5) I almost gave up because I thought surely if McCartney had Celiacs Disease, they would’ve told me by now. One last nudge to call again, and this time I didn’t let the nurse hang up with me. I said I’d wait until she found the results.
Apparently, the lab didn’t submit the results (still annoyed about that) but McCartney did indeed test positive for Celiacs Disease. I was in disbelief and asked if there could’ve been an error. How on earth do you take gluten out of a 5-year old’s diet?!
I have a friend who had found out a few years prior that her then 12-year-old daughter had Celiacs. I messaged her right away, and she actually recommended this Instagram account! She was so helpful as I began our Celiacs journey.
As we eliminated gluten from McCartney’s diet, her tummy completely flattened. Her face suddenly looked healthier from coloring to shape- I had no idea it had been swollen! She perked up and had way more energy. All these night and day differences that showed me how deep in the night we had been before stopping gluten.
There are still times McCartney is sad she can’t have the typical birthday cake or cookies, and her favorite food was a Bambino (glorified Hot Pocket), but she has been such a trooper. I’m so proud of her and how she’s embraced her disease. She doesn’t fight it. McCartney even has the adults who give her snacks (teachers or friend’s parents) check labels and make sure it’s a gluten free snack.
We’ve survived the first year and we’re headed into the next with much more confidence thanks to resources like @cleanmondaymeals!!
Top picture: McCartney, right, the December we did the blood draw
Bottom picture: McCartney now