Because my audience keeps growing, every once in awhile I’ll post on Facebook an older article that I’ve written. Yesterday, I linked to the Doctor Horror Stories our community has shared.
And holy moly…what a response.
So many stories…so much heartbreak.
And all of them speaking to the power of celiac disease and what it can do when left untreated and misdiagnosed.
There was one that really stuck out. It dealt with a child who spent the first 8 years of his life being incredibly sick, doctors who diagnosed him with everything under the sun and a mom who refused to give up.
I’ll let you read it.
My son was diagnosed with epilepsy, juvenile fibromyalgia, depression (they even hospitalized him for depression when he was six. SIX!!), chronic illnesses on top of each other, more than I can list; by the age of six his medical records filled two large boxes (TWO) and he had spent more time hospitalized for “unknown causes” than most adults do in a lifetime!
He had his first seizure at 12 days old, and got worse every day. Twice we were told by doctors to call the family in because he was dying.
He had even been tested for leukemia three times, and had his chromosomes tested for a disorder twice, mostly due to the fact that he suffered from “failure to thrive,” as well as other health problems.
Finally, two months before his 8th birthday, a doctor took me seriously and diagnosed him with celiac. The Dr told me, “I don’t know much about it except that he’s highly allergic to wheat in any form.”
We immediately went 100% gluten free, including foods, drinks, soaps, school craft supplies, etc., and I hit the Internet doing research, quit my job to educate myself on how to save my son’s life.
By the time his birthday rolled around two months later, he had color in his face and energy was quickly coming to him for the first time in his life. In the last two years (since the diagnosis) he has gained a whooping 29 pounds, making him a tall, almost-10 year old, weighing 75 lbs; still looks like a toothpick, but this time he is alive!
All other diagnoses, INCLUDING EPILEPSY, have “cleared up.” Every other diagnoses has been removed, with the exception of epilepsy, because he still has seizures if he comes in contact with gluten.
What’s the lesson here?
Well…if you’re a doctor, get off your lazy ass, think outside the box and put celiac on your list of things to test for.
And if you’re a parent, keep fighting the good fight until you get the answers you deserve.
Kudos to you mom!!