Searching For Refractory Friends

[bethanybryant]

2 minutes ago, Jpate said:

Hi again I trust what I wrote to you earlier was helpful to you. The doctor I have been seeing for the last 4 years is a Professor in Gastroenterology he is the number one in the UK in his field. I was in the Netherlands 2 years ago on a trials with AMG714 and I was given an the drug and not the placebo. I improved so much and felt so much better. The professor in the Netherlands is one of the top men in Europe. Besides having RCD2 I am coping with osteoporosis as well. I keep fit and I love to cycle when I can. Keep yourself in a positive way and you will do great. 

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. 

[crazymurdock]

10 minutes ago, bethanybryant said:

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!

 

 

I have not been in contact with Dr. Murray at the Mayo Clinic for a year or so. My local doctor wants me to contact Dr. Murray and Dr. Green at Columbia University's Celiac Center to see if they have any suggestions. Both doctors are extremely nice and caring. They also correspond with each other along with the group at Chicago's Celiac Center and at NIH.  

[jddh]

@bethanybryant — you’re not alone! My 2 cents:

An very limiting diet like Fasano is worth a consideration. If RCD is in the mix, it’s worth a very prejudiced analysis if there could be any hidden gluten perpetuating inflammation. I’m working through a “Fasano+” — essentially nothing sold in a package. Nausea is my main complaint, like you. It’s tough. Should you do it, keep a symptom diary. Try to gather some evidence as to whether it actually makes a difference or not. 

That said, you can do that while you seek follow-up at a major center. A dietary approach needn’t — probably shouldn’t — hold up other recommended treatmeants. I can speak for the MN Mayo — they are great. RCD of both types are not scary unknowns to them — they’ve seen lots of cases. They treat you with care and lots of expertise, and if ruling out other causes first is appropriate, they’ll do ‘em.

[crazymurdock]

19 minutes ago, Jpate said:

Hi again I trust what I wrote to you earlier was helpful to you. The doctor I have been seeing for the last 4 years is a Professor in Gastroenterology he is the number one in the UK in his field. I was in the Netherlands 2 years ago on a trials with AMG714 and I was given an the drug and not the placebo. I improved so much and felt so much better. The professor in the Netherlands is one of the top men in Europe. Besides having RCD2 I am coping with osteoporosis as well. I keep fit and I love to cycle when I can. Keep yourself in a positive way and you will do great. 

Wow, a fellow AMG714 trial participant. There were only a total 28 of us in the world that qualified for the RCD-Type 2 - phase 2a trial of this drug. High Five! 

 

[Jpate]

I was one of the lucky ones who had the drug AMG714 and it was a good time to because I improved tremendously however after the trial finished the weight I put on I lost. I weigh only 9 stone beside the RCD2 I have osteoporosis. Having been born with celiac disease I learned that 6 years ago I had celiac disease and then 1 year later diagnosed with RCD2. I am 64 years old run cycle and work 12 hours a day. My doctor is now considering stem cell treatment for me however I am keeping a positive outlook and I will not let it get me down. Keep in touch my fellow RCD2 friends. It is 8 pm in the evening and it's cold outside. 

[bethanybryant]

9 hours ago, jddh said:

@bethanybryant — you’re not alone! My 2 cents:

An very limiting diet like Fasano is worth a consideration. If RCD is in the mix, it’s worth a very prejudiced analysis if there could be any hidden gluten perpetuating inflammation. I’m working through a “Fasano+” — essentially nothing sold in a package. Nausea is my main complaint, like you. It’s tough. Should you do it, keep a symptom diary. Try to gather some evidence as to whether it actually makes a difference or not. 

That said, you can do that while you seek follow-up at a major center. A dietary approach needn’t — probably shouldn’t — hold up other recommended treatmeants. I can speak for the MN Mayo — they are great. RCD of both types are not scary unknowns to them — they’ve seen lots of cases. They treat you with care and lots of expertise, and if ruling out other causes first is appropriate, they’ll do ‘em.

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. 

[bethanybryant]

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.

 

[jddh]

@bethanybryant — first the disclaimer: I’m not a doctor, etc, etc.

If it were me, I would try to get an answer from the Mayo doctors who are going to evaluate you. Without that, I would not try to alter your treatment prior to visitation unless already under express instructions from your current doctor. 

I would expect the Mayo to pick up wherever you are “at” rather than prescribe a treatment condition before they get a look at you. When I first went to the Mayo, I had been on budesonide for some weeks. They evaluated me in the context of already being on that treatment. Certainly they see a lot of RCD-candidate folks who are already on immunosuppressants. 

Are you going to the MN Mayo? A few of us — me included — went there. 

[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 longer, but haven't gotten a response. I am going to Mayo in Minnesota. I'm nervous, but hopeful they can confirm the type of refractory I have and help devise a treatment plan.