No one believes me and the doctors say because his small intestine wasn't infected (after weeks on a gluten free feeding tube that they put him on without us asking) he doesn't have CD. This is tearing me apart inside and I at least need some closure if I'm wrong so bear with me because this is a complex situation.
Symptoms along the 3 month journey: Walking Pneumonia, Kidney Failure, CDiff, aortic valve stenosis (the supposed culprit), colitis (supposed 90% destruction of the colon, pushed for surgery, ended up not needing it). NOW: White blood cell count won't go down, kidney dialysis every day.
He has been the healthiest old man we've ever known (75 years old). The doctors told him he was born with one of the 3 aortic valve flaps missing and that it's causing this whole dilemma.
6 months ago he got sick. We didn't know it was walking pneumonia. He finally ended up going to the emergency room and had low blood pressure. They gave him medicine and he had kidney failure so they sent him to an ICU. He has been a "miracle" case all along in the eyes of all the doctors of the 5 hospitals he's been to now. Although I'm 99.9% sure it's just the gluten-free assisted feeding he has had.
I've lost count over these painful 3 months but I believe it's been 3 times now that he's gotten better (to the point where he can eat) on their gluten-free feeding tube formulas and electrolyte only feeding. 3 (?) times now he's been fed his first dairy and gluten infested meal and gone straight back to the ICU.
So this time he's been on the feeding tube and isn't getting better. I hadn't been there in a few weeks because drama broke out and I'm considered an idiot to my whole family because of this but anyway..I go in there the other day and find out they've had him on a feeding formula that has powdered egg yolk in it.... I wanted to explode especially since I had just googled something from his room on my phone that says oxidized cholesterol usually contains gluten.
CD or not, this high fat, high protein diet is killing him. They took him off the food completely now and are trying to get us to let him go. I want an alternative feeding product but how does a peon like me make a difference anywhere?
My words fall on the ears like dust in the wind.
ALSO, his daughter I believe also has CD. She was diagnosed with epilepsy at a young age and became lactose intolerant in her early adult life after having a surgery I can't remember which. She has anxiety disorder and now is having IBS and thinks she might have Chrohn's disease from the symptoms of her friend. She's in her 50's now. She also can't have molasses which I could only trace to CD.
We're praying for a miracle but I believe the miracle's not going to happen without a second opinion which I'm hoping to obtain here. Thank you to anyone who reads this post and so much as says a silent prayer. God bless.