I love your celiac stories. Every damn one of them. Though I might not comment on all of them (the Dude is a busy, busy man), I do read them all and respond when I can.
There are some stories that just grab me though. These are stories that I must share with the community. Not only because they’re so dang amazing, but because there may be other people in a similar situation who read these stories and a light bulb goes off. “Hey…that sounds like my situation!”
Not to be all dramatic and stuff, but by sharing your stories, you may be saving lives. How cool is that??
I received the following story a few days ago via a direct message in Facebook. It’s from a mom whose daughter was placed in hospice by her neurosurgeon, thinking she could not be cured.
Until (thankfully) a GI stepped in.
Read on my friends…
At age 6, after years of testing she was diagnosed with a brain disease, a leukodystrophy called Alexander disease. It’s a terminal, fatal illness. We were devastated.
She was fighting her illness like a champ, went through spinal fusion surgery to help straighten her scoliosis at age 10.
Then last year she started vomiting everyday (she had vomiting often since we started her on table food at 9 months)…then her airway started collapsing. She was put in hospice by her neurologist because she believed the vomiting, choking, anemia and weight loss was due to the brain disease and nothing could cure or help her. I cried for two days then called the hospital begging for GI to do something, anything to save her.
I took her to a GI again to beg for a feeding tube or new drug to stop the vomiting. We saw a new doctor who IMMEDIATELY recognized CELIAC disease. From my daughter’s dark circles under her eyes, poor tooth enamel, terrible dandruff, tiny thin frame, etc.
She was the poster child for Celiac. We put her on a strict gluten free diet .
THE VOMITING STOPPED. She stopped choking! She GOT BETTER!!
This May she was released from hospice!! Gluten was killing her.
She still has the brain disease, but most of the symptoms were from gluten. She would have died if we wouldn’t have changed her diet.
Today she is 13, weighs a tiny 63 pounds. She has energy, she is out of her wheelchair, never chokes or throws up ….and her poop is Normal!
Keep fighting for us!
I will indeed keep fighting. You and your daughter please do the same. So many healing thoughts being sent your way.