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crazymurdock

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Everything posted by crazymurdock

  1. crazymurdock
    Hi Dave, I have had Celiac Disease since 2003 with an upgrade to Type 2 Refractory Celiac Disease in 2014 which is still active. I have been anemic for over a year and my hemoglobin has been dropping every 3-month lab test. I actually will be going for an iron infusion tomorrow morning. Due to the anemia, last April my lymphoma doc suggested that I get a...
  2. crazymurdock
    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/
  3. crazymurdock
    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!
  4. crazymurdock
    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...
  5. crazymurdock
    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...
  6. crazymurdock
    Hi jddh, Glad to see you are still keeping a good attitude. I am sorry you are still fighting the unknowns.
  7. crazymurdock
    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, so it is rare. There are two subsets of Refractory - Type...
  8. crazymurdock
    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 the science even though it was 4 years ago. Open Original...
  9. crazymurdock
    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 have told me that I will need to be on it the rest of my life...
  10. crazymurdock
    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 with Type One and had it under control. Hopefully you...
  11. crazymurdock
    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. I hope to go back on them after the study is completed.
  12. crazymurdock
    Hi sophi054, the medical study you are enrolled in, is it for monoclonal antibody therapy? I was also diagnosed with RCD type 2 back in May, and then reconfirmed in August after many tests at Mayo Clinic. I had clonal t-cells with villous atrophy with increased intraepithelial lymphocytes despite years of being gluten free. I was diagnosed with Celiac Disease...
  13. 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...
  14. crazymurdock
    I know it has been awhile since anyone posted on this topic but thought I would add my two cents. First off, Integrous, I hope you have found some answers by now. Like some of the others, to anyone looking for a great celiac disease doctor, I would also suggest Mayo Clinic and Dr. Murray based off personal experience. I was referred to him from a GI doctor...
  15. crazymurdock

    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

  16. crazymurdock

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

  17. crazymurdock
    I do not know if it is so in other FoodLions grocery stores, but a couple of days ago I went into the one in Waynesville and they had a little section dedicated to gluten free foods. I was shocked! Normally I would have to drive 40 miles to go to Earthfare in Asheville to shop for things.
  18. crazymurdock
    I am hiding out in the Waynesville area- not far from mile marker 20 on Interstate 40.
  19. crazymurdock
    Hi Everyone, Do you have room for one more? I have always been on the heavy side, having a large frame structure, but I am way over now. I am currently 284 lbs and would like to get down to 210 lbs or so. A year and a half ago, while I was traveling to and from Mexico on a job assignment, I went through a rough time and was continuously getting glutened...
  20. crazymurdock
  21. crazymurdock
    Thanks Jackie, I quickly scaned you research paper and plan to read it in more detail when my littles ones are asleep. It is very informative with facts that I had not found on the internet. I recieved some good news from my Dr. last week. Though now I am now going to be more on the lookout for the out of the ordinary symtoms or changes. Thanks...
  22. crazymurdock
    I got to talk to the Dr. by phone last Thursday. The biopsy results were good news - he went through the list of good things such as no hardening of, no Wilson's disease, and so on. There is some inflammation. That was why he had ordered the extra labs - something to do with the soft tissue. I can not remember all the exact wording - but he basically said...
  23. crazymurdock
    Thanks to you and AliB for the info.
  24. crazymurdock
    How long of a duration do you take the milk thistle? I started taking it two weeks ago to see if it helps out. There is nothing in the directions on how long you can or should take it. Thanks!
  25. crazymurdock
    Still do not have any results or answers yet. The nurse called on Monday and asked me to come in for more lab work. When I asked about the liver biopsy, she said that there was some inflamation and the Dr. want to run more blood tests. Hopefully when the lab work comes back, I will be able to talk to the Dr. and see what is up.
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