Celiac to Refractory

August 28, 2014

On January 29th, 2009, I was hit head on by a drunk driver who was driving on the wrong side of the road.

Within three months I became gravely ill. I was unable to eat any food and resorted to living on Ensure. Finally, after three years of research I finally got my doctor to refer me to a gastrinterologist. On March 14th, 2012, she diagnosed me by endoscopy biopsy with Celiac Disease. No problem, right?

I followed the diet and avoided cross contaminates once I got my TTG levels down to 5, from 160 the numbers started creeping back up. Symptoms returned. Then for more than two years I listened to my doctors accuse me of not following the diet correctly.

It was an oncologist than mentioned Refractory.

He referred me to Boston Mass General Hospital. “Wow,” I thought. “that’s serious.”

I met with the lead doctor of the Chrons and Celiac research team. We again did an endoscopy biopsy–where he diagnosed me with Refractory Sprue Disease. I would describe this disease as Celiac gone rogue. A door mat for Lymphoma. Stomach cancer. Whew…really. ..I can do this…God…help me do this.

A CT Scan also confirmed Lymphocytic colitis as well with inflammed pelvic lymph glands. And then we received news that my thyroid gland morphs and the right thyroid needs removal.

We remove the right thyroid as biopsy confirmed suspicious nodules. Post surgery pathology results confirm cancer. The left thyroid needs removal ASAP.

While on short term disability leave I discovered I’m covered for 100 days, but then the compensation is reduced. We add that to the plate. And through it all my rock of a husband continues to nurture and care for me.

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