Life On Hold: Lessons From A Misdiagnosed Illness

As a parent, this would be a nightmare scenario. Your child starts to get sick. They start to show signs of weakness, constant headaches, and complaints about pain all over their bodies but doctors can't figure out what's wrong. You put your kid through endless and invasive tests and procedures. You try different medications but nothing seems to do the trick. Your child just lays there, in bed, in the dark, and nothing you can do can take their pain away.

For Ella Vandergriff and her mom, this scenario was a reality for five months.

“They were mostly bad days. We had very very few good days,” explained Brandy Vandergriff, Ella's mom.

But as horrible as this sounds, Ella is just one of the thousands of people across the U.S. with celiac disease who are misdiagnosed. According to the advocacy and research organization Beyond Celiac, 83% of people suffering from this disease are misdiagnosed or undiagnosed, resulting in inadequate treatment and potential development of other health complications.

One of the reasons why celiac disease is so hard to diagnose is the abundance of symptoms. The updated guidelines on the diagnosis of celiac disease list symptoms that range from weight loss, to short stature, or even the presence of lymphoma.

“That first doctor's visit left me diagnosed with chronic migraines, and I started taking medicine daily," said Ella. "Three weeks later, we went to the ER. I got an MRI and a migraine cocktail which is a mix of extremely strong migraine medications given through an IV. I left with a different diagnosis and more medication. I was feeling so confused and overall just ready for the pain to go away. It was getting worse every single day. Eventually, I was in a wheelchair for nerve spasms and unbearable muscle pains all over my body. My headache was at least an eight out of ten on the pain scale and I was having various side effects from all the medication.”

After months of failed treatments and unbearable pain, Ella was finally diagnosed with celiac disease. She was put on a strict gluten-free diet and she slowly started to heal physically, and mentally.

“I was so afraid of losing time," she said. "Losing the childhood I had always idealized. But looking back, that's not what happened at all. I gained experiences I am lucky to have had. Those moments of hope are so much sweeter amidst hardship. It really puts things in perspective.”

And the healing process didn't stop with Ella.

“I will say the human spirit is pretty resilient," said Brandy Vandergriff. "And when you're thrown into the unimaginable, you really rise to the occasion. You know we are raised to want sort of the perfect little American life. And so sick children are never part of that narrative. This was not part of the plan. So my narrative has changed. It's more of a deeper appreciation for what we have and I also think that I won't be so surprised in the future when we're hit with hard things.”