Daytimevampire replied to dek38's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI have an ungodly list of problems as well not sure if its all celiac related or not, due to the fact that I have refractory celiac and do not get any relief from a gluten free diet. Currently on prednisone and 6mp (chemo) still no relief! :-/ can be very frustrating don't give up, you're not alone!! :-)
Daytimevampire posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Hi my name is heather and I was diagnosed with celiac in 2011. I'm 34. I was since diagnosed as having refractory celiac. I see a doc at the celiac clinic at Stanford university in Palo Alto ca. I have been sick for years, tested for everything under the Sun! lupus, cancer, fibromyalgia, Thyroid disease, etc! Seen just about every kind of specialist there is! No answers other than celiac, fibromyalgia, & chronic fatigue. I feel that all my problems are pieces to a big puzzle & I just need a doc to put it all together! I have had a radical hysterectomy, a bilateral partial mastectomy, every kind of endoscopy there is X 3-4! I have days I can't get out of bed! And others I'm able to function! Constantly sick with upper respiratory infections, I have nodules in my lung, spine, thyroid & small intestine. I'm currently taking 100 mg of 6mp, 20mg of prednisone, depression meds, anxiety meds, fentanyl patch for pain & nurontin. Nothing seems to be helping! I just keep getting sicker! Just a bit of my story. Hoping to get some insight from others. Thanks for listening!