Three Little Engines: Celiac Blood Work

Monday, July 13, 2015

Celiac Blood Work

When I'd received the letter, I felt like a freak, or crazy.

The biopsy clearly showed celiac, but the blood work letter stated normal. I was so confused. Why was I having such enormous issues? Why was it getting worse in spite of my meticulous effort?

I made an appt, but had to wait two months to get back in.

Come to find out, the letter was wrong. And oh so very wrong. Normal is around 4. Abnormal is 10-12. Mine was 60+.

So I'm not crazy after all. I have to go back every 6 months for monitoring, have bone density testing, and other tests I forgot he said because I still so stunned by "60."

No comments:

Post a Comment

Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.