This is a personal post, and it's been on my mind for a while. Last summer, my daughter was diagnosed with Celiac Disease and Autoimmune Hepatitis. Before my daughter's diagnosis, I had never heard of Autoimmune Hepatitis and did not realize Celiac Disease in kids was common. The diagnosis came out of nowhere - my daughter was a seemingly healthy four year-old. My daughter's journey did teach my husband and I to trust our gut in regards to our kids' health. I'm sharing this story because my daughter did not have typical symptoms and her diagnoses could have been easily missed if I did not trust my gut. I hope it resonates with any parent who have a child with unexpected health challenges. Read below for my daughter's diagnosis story.
“Is there a chance your daughter has come in contact with any hypodermic needles or had any blood transfusions in the past?” The doctor asked.
I half-laughed because it sounded so ridiculous and secretly hoped he was joking. Hypodermic needles… What??
The doctor didn’t laugh.
“No,” I replied, scared of what was coming next.
“OK, we’re sending your daughter to the liver clinic at Children’s Hospital - We’ll set up an appointment. In the meantime, let’s test your daughter for hepatitis.”
HEPATITIS?? The only thing I knew about hepatitis was that it could be contracted from a dirty needle and that it affects the liver. Thankfully, my daughter’s blood test came back negative for hepatitis, but the negative result left us with more questions.
This conversation happened about a month after various blood tests that showed that my daughter’s liver enzymes were dangerously elevated. She had been complaining of leg pain for about a month, so at her yearly physical with her pediatrician, I mentioned it – half expecting the doctor to dismiss it as growing pains. Instead, she ordered a blood test.
After the first test, the doctor called and said, “We think it’s mono, which can elevate liver enzymes – Don’t worry, it’s actually really common for young kids to get it, but let’s test just to be sure.”
It wasn’t mono. Through further testing, my 4-year old’s liver enzymes continued to rise higher and higher with no answers as to why.
The appointment at the liver clinic came, and the doctor ordered many additional tests. We didn’t get many answers at that appointment - More blood tests were needed to figure out what was causing the high liver enzymes.
A few days after the blood test, our nurse called and explained that the results showed that my daughter likely has autoimmune hepatitis and celiac disease, but they would need to do a liver biopsy to confirm the hepatitis and endoscopy to confirm celiac.
A few weeks later, the results from the hospital procedures confirmed what the doctors suspected: my daughter had both autoimmune hepatitis and celiac disease. It was a double diagnosis that would require lifelong management. As a parent, it's hard to describe the mix of emotions that come with hearing words like "autoimmune hepatitis" and "celiac disease." I remember feeling a mix of disbelief, fear, and an overwhelming need to understand what this meant for my daughter.
After the diagnosis, I asked my daughter’s hepatologist how she developed autoimmune hepatitis. He explained it’s not completely known why it’s triggered, but suspected that untreated celiac could have played a part. It’s still hard to wrap my head around my daughter’s double diagnosis.
Especially confusing was that from the outside, my daughter was an active, happy, healthy child. It was hard to comprehend that on the inside, she was very sick and had been dealing with two serious diseases. Her only complaint was leg pain, something I initially thought might just be growing pains. I can’t say how thankful I am that I decided to trust my gut and bring up her leg pain to her doctor.
Through all of this—the blood tests, hospital procedures, doctor visits, and a complete shift to a gluten-free lifestyle—my daughter has shown incredible strength and adaptability. I am thankful. Thankful that despite my daughter’s diagnosis, she is active, curious, happy – everything a typical five-year old should be. Thankful that both of her diseases can be managed. Thankful that it wasn’t something worse. Thankful that my daughter’s celiac diagnosis led to my own celiac diagnosis.
In our case, that small symptom of leg pain led to the discovery of significant health issues. I can't imagine what might have happened if I had dismissed it or waited longer to investigate. It's a reminder that appearances can be deceiving; just because a child looks healthy doesn't mean they aren't facing serious health challenges. If something feels off, trust that feeling and advocate for your child. Early intervention can make all the difference in managing health conditions and ensuring the best possible outcomes.
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