bethanybryant

@jddh, Thanks for your response. I'm following my local physician's treatment plan, which is to wean me off steroids. I'm just worried about how the endoscopy findings will be influenced by the prednisone, but I'm sure the doctors at Mayo will consider that. I've tried to get an answer about whether to postpone my appointment until I've been off steroids...

Alright, refractory celiac friends. I need some advice. I am scheduled to travel to Mayo in April for further evaluation related to refractory celiac. I know I'm scheduled for an upper endoscopy and capsule endoscopy, but I'm concerned as to how useful these will be considering I've been on prednisone for the past two months. When I called and asked if it...

Thanks so much for the information. Good luck on the Fasano diet! I appreciate all the input and information I am receiving here. It's nice to hear from others who are living with RCD since this diagnosis is so new to me. I've been diagnosed with celiac for so long that it was no big deal to me, and now... well, it's much more complicated.

Yes, what you wrote was very helpful. With such limited information available and what is out there sounding so dire with the words "poor prognosis" written over and over, it is so nice to hear from someone who is dealing with this and staying positive. I lived an active life before the past few months, and I look forward to getting back to that.

Erik, I'm glad to hear someone with RCD2 mention work. I have a full-time job and work PRN, which typically amounts to an extra 3 hours or so a week. I've been nervous about whether or not I can continue my PRN job. I was running half marathons before this RCD stuff appeared, so I'm ready to be on the move again. If you don't mind me asking, are you...

No offense taken. I have considered the Fasano diet, but have not trialed yet. I've been having such trouble with nausea that I wasn't sure I could do it quite yet, as I was living off gluten-free cheese toast for a couple months. Very few things have been palatable, but I'm wondering if the Fasano diet could be worth a try if I can stomach it. I've been...

John, Thanks so much for responding. I especially appreciate hearing a little about how your RCD2 is being managed. My GI is starting me out on prednisone, which I haven't done particularly well with in the past, so I'm a bit frustrated. I was hoping he would consider starting me with budesonide. I'm glad to hear you have good physicians. I know RCD...

I would love to hear from anyone diagnosed with refractory celiac disease about where you’re being followed for the condition. I was recently diagnosed as Refractory type II. I had many health issues prior to my celiac diagnosis 19 years ago, but had been doing very well since going gluten free almost two decades ago. Suddenly in October, I got very sick w...