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bethanybryant

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About bethanybryant

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  1. 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 was a problem for me to be on prednisone, the person I talked to looked at the information from the appointment guide and said that since it doesn't mention prednisone as a med to stop, I should be fine. My question is this: Were you already taking medications for refractory celiac at the time of your procedures at Mayo? I guess the benefit of getting the endoscopies done while still on prednisone is that I could see if I have some mucosal recovery with steroid treatments. I just worry that I should wait until I'm off of the prednisone and have it out of my system before I get the follow-up EGD at Mayo. That way I could see how my small intestine is responding without treatment. My local GI is tapering me and hopes to have me off the pred in a couple weeks. Any thoughts or insights are appreciated.
  2. 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.
  3. 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.
  4. 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 still followed for your RCD at Mayo, even post clinical trial? Thanks!
  5. 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 so fortunate to be off steroids and immunosuppressants (related to autoimmune hepatitis that has thankfully resolved) for years, so I'm pretty disappointed to be going back to that. If diet can resolve my issues, I'm all for it. I don't really do gluten-free oats just because when I was first diagnosed, it was still in the "no wheat, oats, rye, or barley" stage of celiac education so I've been nervous to add those back in my diet. I don't do the gluten-free beers, either. I'm struggling now to figure out whether to be compliant and do the steroids, or hold out and try Fasano. I don't know what to think. I'm not close to Chicago or Mayo, but I'm willing to get to either. I'm in my mid 30's and hopefully have many years left, so I want to make sure I'm doing everything I can to stay well and keep this under control. Thanks for your response!
  6. 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 is rare and the more I read, the more I feel like I'm going to have to seek out a celiac center where the physicians have seen more RCD cases.
  7. 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 with what I thought was a virus, but it didn’t resolve, leading to the follow-up labs, endoscopy, and refractory diagnosis. My GI has seen very few cases, so I’m wondering if I should follow up at a celiac center. I’ve looked into Mayo and Chicago. Any thoughts or recommendations about which to choose? I’m mainly looking to confirm the diagnosis of type II and to find out about their treatment recommendations. Thanks in advance!
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