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crazymurdock

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by crazymurdock

  1. 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. 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. 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. 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. 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. Hi jddh, Glad to see you are still keeping a good attitude. I am sorry you are still fighting the unknowns.
  7. 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.
  8. 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...
  9. 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

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

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