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About Jpate

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    Marsh code 3c and totally villous atrophy

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About Me

I have refactory type two celiac disease and I have had celiac disease since birth. However I was only diagnosed 6 year's ago then 2 year's after I was told that I have refactory type two. But I don't care just enjoy life. There's always someone worse off. 

  1. At the moment I have lost about 3 kilo in the past 9 months and the amount of food I eat which is a lot. I weigh under 9st however I have been very thin all of my life. I am not absorbing a lot of nutrients from my food. It seems what ever I eat comes out the other end. I have been seeing a Professor for the last 7years every 3 months and I have had enough. So I don't think I will be going back anymore and I'm going to finish seeing him.
  2. Hi I have RCD2 and villous atrophy have been like it for about 5 years now. I don't worry about it anymore just accepted that I have got it. The main issue in life is be positive, and get on with your life and be safe
  3. Welcome to the club I have been in the same situation for the last 5 years. I am lucky living in the UK I have been having my treatment with the NHS and it's free. I am still having treatment after all these years and I was diagnosed with marsh 3c. Ask your doctor about B12 injection that may help you. I'm having B12 injection every 3 months for the rest of my life. Hope this will help you. Regards John
  4. What I would like to ask you is, people who have refractory celiac type 2 like myself. What are the consequences for those people because I have RCD2 and I have been furlough for 12 weeks.
  5. I myself am a patient of David Sanders and I have been for the last 5years. He is a brilliant man especially in Gastroenterology. I have had RCD2 for the last 5 years and I am currently doing well and that is with the help of David Sanders and his team.. I also had 5 endoscopies and without those I wouldn't have known that I had RCD2
  6. Hi my name is John and I have had RCD2 for the last 6 years. I am and have been on steroids and immunosuppressents. I have lost 6 kilos in weight within the last 2 years. Now I am waiting to go into hospital for a stem cell transplant. If it happens great otherwise I will just get on with life.
  7. 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 eve
  8. 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.
  9. 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 h
  10. 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
  11. 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.
  12. 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
  13. I am from the UK and I have been suffering from Refactory type two celiac disease for the past 4years. I have been on trials in Holland for 5 months for Refactory type two and have never heard any results from the trials. I have suffered from undiagnosed celiac disease for overy 55 year's until 6 year's ago and then I found I had Refactory type two celiac disease. However without these trials we would never progress to finding any sort of cure for any disease which can or could be fatal. My hat goes off to these Proffessionals who are doing their utmost to helping people like us. Goo
  14. 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.
  15. My name is John I have had celiac disease since I was born but only diagnosed with it 6 year's ago. I also have refactory type two celiac disease for the past 4 year's and have got total villous atrophy. I have a Marsh 3c. I have been taking budesonide and azathioprine, I also have osteoporosis and anemia. I have been seeing the top man in the UK and I go to the hospital every 6 to 8 weeks to have my bloods checked
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