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jddh

Searching For Refractory Friends

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Hi folks,

Going long here to look for pen pals with confirmed refractory celiac disease.

Still excluding some other possibilities, but it looks like I'm part of this exclusive club. If you know any other folks out there who feel like talking, I'd love to connect.

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Hi jddh,

 

This last June, I was diagnosed with type 2 rcd from a local gi doctor who then referred me to Mayo Clinic. It has been a challenging journey - especially this past year dealing with the symptoms, the unknowns, and at times the ignorance that comes with celiac disease and gluten. I was diagnosed with celiac disease by a biopsy in 2003. From before that diagnose up till this June when they started me on budesonide, I endeared diarrhea every day despite a gluten-free diet.     

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I think anyone dealing with refractory celiac disease should definitely look into the Specific Carbohydrate Diet. I suppose by the guidelines, I myself would be considered refractory. The gluten free diet was helping, but it wasn't enough. I still wasn't losing the weight I gained. The bloating was still awful. My rosacea was awful...my scalp, etc etc. I could go on and on. Sometimes the gluten free diet isn't enough because of all of the damage the years of undiagnosed celiac disease have done to our guts. I didn't go to my MD and tell him I wasn't feeling 100%, or he might have diagnosed me with refractory. Instead I went to a naturopath and we looked into other food intolerances/allergies. I went on this diet on my own, though. 

 

Just look into it. I am feeling so much better and it's only month 1 of the diet. I can already fit into a lower pant size...my skin looks noticeably better, my energy levels are improving, etc etc. This diet is geared specifically to help people with all bowel diseases - crohn's disease, ulcerative colitis, celiac disease, etc. It concentrates on eating the foods that are easy to digest on a healing gut. It is completely grain free (so no rice, corn, quinoa, etc) and no starches either (potatoes, yams) instead you eat more whole foods, like vegetables, fruit, eggs, etc. When I first went gluten free I saw a huge improvement...I felt a lot better, my weight went down a bit, skin improved a bit, but then I plateaued. I was still eating other foods my body just couldn't handle, like dairy and soy. Sometimes you just need to avoid more foods so that your gut can heal. When I gave up soy/legumes, within a couple of days my boyfriend was shocked. It looked like I lost a lot of weight already. No...it was just the bloating going down. I had no idea that I had to give up a lot more food than just gluten. 

 

You have nothing to lose :)

 

http://www.breakingtheviciouscycle.info/home/

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Hi jddh,

 

This last June, I was diagnosed with type 2 rcd from a local gi doctor who then referred me to Mayo Clinic. It has been a challenging journey - especially this past year dealing with the symptoms, the unknowns, and at times the ignorance that comes with celiac disease and gluten. I was diagnosed with celiac disease by a biopsy in 2003. From before that diagnose up till this June when they started me on budesonide, I endeared diarrhea every day despite a gluten-free diet.     

Hi crazymurdock, thanks for writing. I am type 2 as well—diagnosed six days ago. May I write you via private thread? Would love to chat more.

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Hi.

    I'm Tamar from Israel. About one and a half years ago, my daughter, who is now 29 years, was confirmed to have RCD type 1. She has Down Syndrome, on the higher intellectual, functioning and independence levels, but this illness change the course of her life. She had to move back home from an semi-independent living with a group of friends with D.S., her work in the free market, hobbies, performing in a special play all over the country and enjoying as normal, full life as possible. That so I can watch her 24/7, cook all her special food and take her to all the medical procedures and followups. Being so rare, I didn't find yet an expert on the subject in Israel, wile there are many who are specialist in children's "regular" celiac. Also, despite many searches on the net, didn't have anyone responding to me in Israel having RCD.

    In addition to the obvious supplements of vitamins, minerals and protein, 4 eggs a day etc, she's been taking 9 ng. of Budeson a day during this past year and a half. This keeps her more or less in check, although many times she suffers from sudden bursts of stomach and mid-chest pains, getting tiered fast and have a lose stool. This prevents her from working, sports, traveling longer then a few hours etc. She spends most of her time at home. When the doctors tried to lower the dose, her symptoms became much more severe, so she is dependent on it for basic functioning. Despite all, she is a very positive, happy person and manages to uplift herself after each pain episode, lough, dance, sings, surf the net, write letters to friends, paint and play. 

     While deeply searching the net for any new info. about RCD, reading that it is for life with no way of healing, just managing, I read a few articles about a new (from 2017) treatment for RCD, using what is termed "Fecal microbiota transplant",  " process of transplantation of fecal bacteria from a healthy individual into a recipient" , tried so far on a few individuals with RCD with FULL RECUVERY of the intestines. Did anyone of you heard about it, about anyone who undergone the procedure?

    I'll be delighted and thankful for anyone from any were in the world who has a proven RCD to be in touch with me here or via my mail - kisslev3@gmail.com. 

    

 

 

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20 hours ago, Tamar - Israel said:

Hi.

    I'm Tamar from Israel. About one and a half years ago, my daughter, who is now 29 years, was confirmed to have RCD type 1. She has Down Syndrome, on the higher intellectual, functioning and independence levels, but this illness change the course of her life. She had to move back home from an semi-independent living with a group of friends with D.S., her work in the free market, hobbies, performing in a special play all over the country and enjoying as normal, full life as possible. That so I can watch her 24/7, cook all her special food and take her to all the medical procedures and followups. Being so rare, I didn't find yet an expert on the subject in Israel, wile there are many who are specialist in children's "regular" celiac. Also, despite many searches on the net, didn't have anyone responding to me in Israel having RCD.

    In addition to the obvious supplements of vitamins, minerals and protein, 4 eggs a day etc, she's been taking 9 ng. of Budeson a day during this past year and a half. This keeps her more or less in check, although many times she suffers from sudden bursts of stomach and mid-chest pains, getting tiered fast and have a lose stool. This prevents her from working, sports, traveling longer then a few hours etc. She spends most of her time at home. When the doctors tried to lower the dose, her symptoms became much more severe, so she is dependent on it for basic functioning. Despite all, she is a very positive, happy person and manages to uplift herself after each pain episode, lough, dance, sings, surf the net, write letters to friends, paint and play. 

     While deeply searching the net for any new info. about RCD, reading that it is for life with no way of healing, just managing, I read a few articles about a new (from 2017) treatment for RCD, using what is termed "Fecal microbiota transplant",  " process of transplantation of fecal bacteria from a healthy individual into a recipient" , tried so far on a few individuals with RCD with FULL RECUVERY of the intestines. Did anyone of you heard about it, about anyone who undergone the procedure?

    I'll be delighted and thankful for anyone from any were in the world who has a proven RCD to be in touch with me here or via my mail - kisslev3@gmail.com. 

    

 

 

The original OP was misdiagnosed.  Instead he was found to have non-responsive celiac disease and not refractory.  

https://www.celiac.com/forums/topic/108687-even-gluten-free-foods-triggering-reaction-after-initial-glutening/?page=2&tab=comments#comment-956467

Maybe you daughter was mis-diagnosed?  Non-responsive celiacs have responded to a very strict gluten-free diet.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

I am sure you have researched this throughly.  I thought I would share anyway.  I wish your and your daughter well.  

Edited by cyclinglady

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Hi cyclinglady. Thanks for your comments. My daughter is on the strict non-gluten diet, eats only what I cook for fresh products and a few spices that are from a proven non-gluten company. I don't even dare to give her any form of corn, in case she is among those who can't tolerate it as well.  Also all her internal tests show clearly RCD type one. 

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I am so sorry that you are both dealing with refractory celiac disease.  I sincerely hope that by living with you, she will be able to heal.  I also hope that celiac.com members who are dealing with refractory celiac disease will respond to your post and offer their advice.  

I did just see a YouTube video from UC TV (University of California) on fecal transplant and the GI bionome out of UC San Diego.  It does sound promising, but I think it is being considered for C. Diff and Inflammatory Bowel Disease patients.   I can not recall this as in option for celiacs since it only affects the small intestine where there is little bacteria.  But who knows?  This is a relatively unexplored part of the body.  

https://health.usnews.com/health-care/patient-advice/articles/2018-05-10/heres-why-people-are-donating-their-poop-to-science

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I think this page needs  updating to the relevant 2018 and not looking back at issues going  back to 2014. When it is updated send me a  message and I will talk freely about refactory type two celiac disease which I've had for the past 3 year's and I have suffered  with celiac disease since  birth. Also  check out  if your refactory type two and if you are, ask about if they've expained to  you about the  Marsh  code  as I have  a Marsh code 3c which is the worst you can  have. 

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6 hours ago, Jpate said:

I think this page needs  updating to the relevant 2018 and not looking back at issues going  back to 2014. When it is updated send me a  message and I will talk freely about refactory type two celiac disease which I've had for the past 3 year's and I have suffered  with celiac disease since  birth. Also  check out  if your refactory type two and if you are, ask about if they've expained to  you about the  Marsh  code  as I have  a Marsh code 3c which is the worst you can  have. 

Why not start start a new posting?  We could used updated refractory celiac disease advice.  

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On 10/30/2014 at 2:15 AM, jddh said:

Hi folks,

 

Going long here to look for pen pals with confirmed refractory celiac disease.

 

Still excluding some other possibilities, but it looks like I'm part of this exclusive club. If you know any other folks out there who feel like talking, I'd love to connect.

Hi  there 

My name is John I have been suffering from undiagnosed celiac disease for the past 55 year's. And 6 year's ago  I was diagnosed with celiac disease, then after a year and half I was diagnosed with refactory type two celiac disease. My diet is totally gluten free and if I have any of amount of gluten the smallest amount makes me seriously ill. I also have a Marsh code 3c which is total villous atrophy. I have osteoporosis I am taking budesonide and azathioprine. I have a b12 injection every 12  weeks also follic acid tablets. However I try not to worry about the disease and just get on with life. So welcome to the clan.

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Hi @Jpate,

Sorry to not respond to my own thread sooner. Mine is a long story that started when I started this thread in 2014. After a few confusing years and several clinic visits, scopes, prescription trials etc, I continue to show test results that are "suspicious" for RCD2. The current supposition is that I am/have been in a transitory state away from garden-variety celiac disease into the "clonal" state that is essentially RCD2. It's been a long, frustrating journey and I don't really know what's going to happen next. Compared to a lot of people that suffer chronic celiac-related issues, I think I still stand pretty lucky — I am often uncomfortable symptom-wise, but rarely totally infirm, and I continue to have stretches where I feel basically OK. Like you, the merest hint of gluten contamination makes me very sick, but so far I seem to bounce back OK.

I'm on a third try of Rifaximin to rule out SIBO causing my abnormal lymphocytocis — I have SIBO, but we don't know if it's a cause or an effect. As I write this, I'm discouraged because the Rifaximin makes me feel awful — almost like being glutened — but I'm trying to stick with it. If this doesn't work, it will be back to budesonide. I am optimistic that budesonide will be positive for me because, if you read back on this long thread, a short course of that drug in 2014 seemed to work so well that the doctors felt I was healed and out of the RCD woods. Hopefully I'll have similar results. I'm also a month into a gluten contamination elimination diet to make sure I'm not making any chronic mistakes, but to me this is unlikely.

I like your attitude — keep going with life! I'm not yet 40 and I'm trying to stay away from fear and have the life I'd have without this crap. I'm encouraged that there's more than two of us on this forum. Would love to chat further if you're up to it — send me a PM.

I think other folks above have already started their own threads, but I would encourage everyone to start their own discussion (but please quote my forum name; would love to contribute). You'll get more support.

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Thanks for your reply. I feel for anyone who has rcd2 and I am always trying to read about celiac disease and rcd2. The cituation now is that my pains seem to be getting worse. But as I always say there is always someone worse off. So to everyone who has rcd2 keep on with the good fight and hope some cure is found quickly.

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Can anyone tell me what stem cell treatment is like. Because I have RCD2 it looks like my next course of treatment could be stem cell treatment. 

Has anyone ever had this treatment and if so what is the procedure and the outcome of it all and is it worth having. 

 

Jp 

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