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crazymurdock

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About crazymurdock

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  1. This article from NIH gives a more thorough description of the differences between Type 1 RCD and Type 2 RCD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/
  2. 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!
  3. 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...
  4. 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...
  5. Hi jddh, Glad to see you are still keeping a good attitude. I am sorry you are still fighting the unknowns.
  6. Having elevated ttg levels would lean towards not having Refractory Celiac Disease. It is one of the first tests that a Celiac Center performs. There is still a small possibility to have elevated ttg and have RCD but it is not likely per the two Celiac Centers I have been to. 1% of Celiacs have RCD...
  7. Hope the rest of your labs are just as good as the albumin. Last April a year ago my albumin was at 1.6, now it is 3.65. Just like you, I am trying to avoid the enteral feeding. Below is a link to a page I found awhile ago while researching RCD that is one of the better ones as far as explaining...
  8. Budesonide is a little more specialized and does not effect the whole body like Prednisone does. When digested, it stays and effects mainly the intestines. The only thing is that it is a lot more expensive. Luckily my insurance covers most of it other wise it would be out of the question. The docs...
  9. Hi Leuconostoc Cyclinglady is correct in that refractory celiac disease is rare - affecting 1-2 percent of Celiacs. Type One is usually controlled by a short stint of immunosuppressants to calm the body down and a strict diet. Type Two is not so easy to treat. It sounds like you had been diagnosed...
  10. I had taking the CeliAct Multivitamin for a 6 week period last year and it seemed to help increase my energy level some. After I started a study with Mayo Clinic and they requested that I come off it and the probiotics so that they wouldn't interfere with the study drug...
  11. 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...
  12. Hello lblb24,

    To be honest, I have not gone to many of the resturants in Magie Valley. I live not but 5 minutes from there, but hardley go - very sad. I do not know of a resturant in the area that specifically caters to gluten-free food, but any time I have ate out, all the people have been very understanding when I ask questions concerning the food - some places, like Outback Steakho

  13. I saw that your from Waynesville. I am vacationing to Maggie Valley in June. Any restaurants with gluten free options?