Searching For Refractory Friends

[jddh]

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.

[crazymurdock]

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.     

[Waitingindreams]

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/

[Waitingindreams]

http://blog.scdrecipe.com/blog/2012/12/07/gluten-free-not-working-for-celiac-disease-youre-not-alone

[jddh]

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.

[Tamar - Israel]

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. 

    

 

 

[cyclinglady]

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.  

[Tamar - Israel]

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. 

[cyclinglady]

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

[Jpate]

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. 

[cyclinglady]

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.  

[Jpate]

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.

[jddh]

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.

[Jpate]

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.

[Jpate]

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 

[bethanybryant]

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! 

[Jpate]

Hi my name is John and I was diagnosed with RCD2 nearly 5 years ago. I have been through 5 months of trials in the Netherlands and have been very ill myself over the last few years. I am from England and have the best doctor in the UK. I have been on prescription tablets for a few years now, I am currently taking budesonide, azathioprine, folic acid and have B12 injections every 3 months. It is not as bad as you may think but keep asking your doctor questions about RCD2. Look on the Internet but don't take everything you read on the Internet as gospel. Keep a positive outlook on life. Hope I have helped you a little. Good luck. Get back to me if you can. Oh by the way I was born with celiac disease but wasn't diagnosed until 6 years ago. 

[crazymurdock]

On ‎12‎/‎14‎/‎2018 at 2:00 PM, jddh said:

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.

Hi jddh,

Glad to see you are still keeping a good attitude. I am sorry you are still fighting the unknowns. 

[cyclinglady]

13 hours ago, bethanybryant said:

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! 

Bethany

I do not have refractory celiac disease, but researched it heavily when I experienced symptoms that would not resolve after a suspected gluten exposure.  I resisted a repeat endoscopy and chose to follow the Fasano diet first which did not work for me.  Repeat biopsies revealed Chronic Autoimmune Gastritis and a healed small intestine.  During my research I came across a woman who was diagnosed with refractory Type I.  She was on busonide for a while.  Turns out she was non-responsive and not refractory when she went to Mayo for a second opinion.  So, please consider a second opinion from one of our leading celiac centers in the US.  If you are close to U of Chicago or Mayo, either one would be great in my opinion.  

I do not mean to offend, but did you trial the Fasano gluten-free diet?  I am curious because there has been so much controversy over gluten-free oats, gluten-removed beers, etc.  I am sure you have seen the increase in gluten-free processed foods over the past 20 years.  I am wondering if this impacts refractory celiac disease.  

In any case, I wish all of you on this thread, a complete recovery.  Please know that your posts help so many!  

[cyclinglady]

On 12/18/2018 at 12:00 PM, Jpate said:

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.

@Jpate

Thank you for sharing.  There is so much that is not known about refractory celiac disease.  Your posts can help many.  I sincerely wish you well!  

[crazymurdock]

1 hour ago, Jpate said:

Hi my name is John and I was diagnosed with RCD2 nearly 5 years ago. I have been through 5 months of trials in the Netherlands and have been very ill myself over the last few years. I am from England and have the best doctor in the UK. I have been on prescription tablets for a few years now, I am currently taking budesonide, azathioprine, folic acid and have B12 injections every 3 months. It is not as bad as you may think but keep asking your doctor questions about RCD2. Look on the Internet but don't take everything you read on the Internet as gospel. Keep a positive outlook on life. Hope I have helped you a little. Good luck. Get back to me if you can. Oh by the way I was born with celiac disease but wasn't diagnosed until 6 years ago. 

Hi John, 

My name is Erik and I live in the US. I was originally diagnosed with Celiac in 2003. Despite a gluten free diet, trying different things like prescribed digestive enzymes, probiotics, the different restrictive diets, and the AVL-003 trial, I continued having diarrhea for 11 years. After I started going up to 22 times a day and had went from 250lbs to 179lbs in 3-4 months, a new gi doctor performed another endoscopy and did the additional specialized tests that came up with the Type 2 celiac disease in May of 2014. I then participated in the Mayo Clinic's Hu-Mik-Beta-1 antibody trial in 2014-2015, and the AMG 714 trial (2016-2017) for Refractory Celiac at Columbia University. With the Hu-Mil-Beta-1, I was getting better but then started developing antibodies to their antibodies and had to stop the trial before completion. When they performed the final endoscopy for the exit of the trial, the biopsy results did show normal villi, normal intraepithelial lymphocytes, and a normal T-cell population (happy dance), so I was taken off of Budesonide that I had started on in mid-2014. Less then one year later however, I was in the hospital for 4 days with IV's in both arms with calcium, potassium, magnesium, and prednisone dripping in. I had to have additional infusions of potassium and calcium for 4 months after and continued an oral prednisone for two years. During the hospital stay, they also had me start back on the Budesonide. My biopsy came back with complete villous atrophy, abnormal intraepithelial lymphocytes, and the subsequent test that showed the clonal t-cells were back again. So the Type 2 celiac disease was back. At the time of the hospital stay, my calcium level had dropped to 5.4 which seem to of have started a chain reaction with my parathyroid. Since 2016, I had been on 1,800mg of calcium a day and my calcium level slowly creeped up. I was at 8.2 in November. From a bone scan in May, my previously diagnosis of Osteopenia had progressed to Osteoporosis and my primary care doc wanted me to start meds for it. It didn't feel right, so I refused and he asked if I would go to a arthritic doctor. I agreed and went to him and from looking at all the test results, he said if I was a 75 year old, he would immediately say I had Osteoporosis and would want me to start an osteoporosis drug but with me at the age of 45, was hesitant. I told him I preferred not to go on one because I was already on 20 pills a day so he asked if he could run some labs. Later that evening, he called and said he wanted to send me to an endocrinologist because my parathyroid levels where high. I went to the endocrinologist and after some tests, he came up that I had Secondary Parathyroid Disease which probably was caused from the Celiac Disease and the treatment would be to add an additional 2,000mg a day of calcium. He also said that it would of been a big mistake if I had gone on the Osteoporosis drug before the parathyroid issue had been resolved. So, I have been on 3,800mg a day since November. I go back next week to retest my levels.  

With the AMG-714 trial, turns out I received the placebo.

In addition to the Celiac and high liver levels, the last two years I have also had 4 dvts in my left leg, Venous Insufficiency in both legs, the parathyroid issues, and type 2 diabetes. To maintain lab levels, I do take a B12 injection once a month, one multivitamin, iron, magnesium, calcium, potassium, folic acid, vitamin c, budesonide, 81mg of aspirin, metformin, vitamin D3, Omeprazole, and Zinc for a daily total of 22 pills. My ttg antibody levels have been normal and are being tested every 6 months. I did have another endoscopy in November and I still have damage in the gut, abnormal lymphocytes, and the t-cell analysis shows the same type population as it was in 2016. Good news is the T-cells didn't seem to get worse! Bad news is the diagnosis are starting to pile up. Despite all the above, I still work 50+ hours a week at a papermill to help support my family but mainly to push myself physically. I average around 4.5 miles of walking a day during a 10 -12 hour shift, provided that I wear my compression stockings. Being there for my family and especially for my daughters is what helps me push to not give up and hope for a cure.   

[bethanybryant]

4 hours ago, Jpate said:

Hi my name is John and I was diagnosed with RCD2 nearly 5 years ago. I have been through 5 months of trials in the Netherlands and have been very ill myself over the last few years. I am from England and have the best doctor in the UK. I have been on prescription tablets for a few years now, I am currently taking budesonide, azathioprine, folic acid and have B12 injections every 3 months. It is not as bad as you may think but keep asking your doctor questions about RCD2. Look on the Internet but don't take everything you read on the Internet as gospel. Keep a positive outlook on life. Hope I have helped you a little. Good luck. Get back to me if you can. Oh by the way I was born with celiac disease but wasn't diagnosed until 6 years ago. 

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. 

[bethanybryant]

2 hours ago, cyclinglady said:

Bethany

I do not have refractory celiac disease, but researched it heavily when I experienced symptoms that would not resolve after a suspected gluten exposure.  I resisted a repeat endoscopy and chose to follow the Fasano diet first which did not work for me.  Repeat biopsies revealed Chronic Autoimmune Gastritis and a healed small intestine.  During my research I came across a woman who was diagnosed with refractory Type I.  She was on busonide for a while.  Turns out she was non-responsive and not refractory when she went to Mayo for a second opinion.  So, please consider a second opinion from one of our leading celiac centers in the US.  If you are close to U of Chicago or Mayo, either one would be great in my opinion.  

I do not mean to offend, but did you trial the Fasano gluten-free diet?  I am curious because there has been so much controversy over gluten-free oats, gluten-removed beers, etc.  I am sure you have seen the increase in gluten-free processed foods over the past 20 years.  I am wondering if this impacts refractory celiac disease.  

In any case, I wish all of you on this thread, a complete recovery.  Please know that your posts help so many!  

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!

[bethanybryant]

2 hours ago, crazymurdock said:

Hi John, 

My name is Erik and I live in the US. I was originally diagnosed with Celiac in 2003. Despite a gluten free diet, trying different things like prescribed digestive enzymes, probiotics, the different restrictive diets, and the AVL-003 trial, I continued having diarrhea for 11 years. After I started going up to 22 times a day and had went from 250lbs to 179lbs in 3-4 months, a new gi doctor performed another endoscopy and did the additional specialized tests that came up with the Type 2 celiac disease in May of 2014. I then participated in the Mayo Clinic's Hu-Mik-Beta-1 antibody trial in 2014-2015, and the AMG 714 trial (2016-2017) for Refractory Celiac at Columbia University. With the Hu-Mil-Beta-1, I was getting better but then started developing antibodies to their antibodies and had to stop the trial before completion. When they performed the final endoscopy for the exit of the trial, the biopsy results did show normal villi, normal intraepithelial lymphocytes, and a normal T-cell population (happy dance), so I was taken off of Budesonide that I had started on in mid-2014. Less then one year later however, I was in the hospital for 4 days with IV's in both arms with calcium, potassium, magnesium, and prednisone dripping in. I had to have additional infusions of potassium and calcium for 4 months after and continued an oral prednisone for two years. During the hospital stay, they also had me start back on the Budesonide. My biopsy came back with complete villous atrophy, abnormal intraepithelial lymphocytes, and the subsequent test that showed the clonal t-cells were back again. So the Type 2 celiac disease was back. At the time of the hospital stay, my calcium level had dropped to 5.4 which seem to of have started a chain reaction with my parathyroid. Since 2016, I had been on 1,800mg of calcium a day and my calcium level slowly creeped up. I was at 8.2 in November. From a bone scan in May, my previously diagnosis of Osteopenia had progressed to Osteoporosis and my primary care doc wanted me to start meds for it. It didn't feel right, so I refused and he asked if I would go to a arthritic doctor. I agreed and went to him and from looking at all the test results, he said if I was a 75 year old, he would immediately say I had Osteoporosis and would want me to start an osteoporosis drug but with me at the age of 45, was hesitant. I told him I preferred not to go on one because I was already on 20 pills a day so he asked if he could run some labs. Later that evening, he called and said he wanted to send me to an endocrinologist because my parathyroid levels where high. I went to the endocrinologist and after some tests, he came up that I had Secondary Parathyroid Disease which probably was caused from the Celiac Disease and the treatment would be to add an additional 2,000mg a day of calcium. He also said that it would of been a big mistake if I had gone on the Osteoporosis drug before the parathyroid issue had been resolved. So, I have been on 3,800mg a day since November. I go back next week to retest my levels.  

With the AMG-714 trial, turns out I received the placebo.

In addition to the Celiac and high liver levels, the last two years I have also had 4 dvts in my left leg, Venous Insufficiency in both legs, the parathyroid issues, and type 2 diabetes. To maintain lab levels, I do take a B12 injection once a month, one multivitamin, iron, magnesium, calcium, potassium, folic acid, vitamin c, budesonide, 81mg of aspirin, metformin, vitamin D3, Omeprazole, and Zinc for a daily total of 22 pills. My ttg antibody levels have been normal and are being tested every 6 months. I did have another endoscopy in November and I still have damage in the gut, abnormal lymphocytes, and the t-cell analysis shows the same type population as it was in 2016. Good news is the T-cells didn't seem to get worse! Bad news is the diagnosis are starting to pile up. Despite all the above, I still work 50+ hours a week at a papermill to help support my family but mainly to push myself physically. I average around 4.5 miles of walking a day during a 10 -12 hour shift, provided that I wear my compression stockings. Being there for my family and especially for my daughters is what helps me push to not give up and hope for a cure.   

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!

 

 

[Jpate]

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.