crazymurdock
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Scott Adams reacted to a post in a topic:
Blood transfusions and celiac
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Altocleff reacted to a post in a topic:
Blood transfusions and celiac
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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...
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New (for me) celiac disease categories
crazymurdock replied to trents's topic in Related Issues & Disorders
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/ -
cyclinglady reacted to a post in a topic:
Searching For Refractory Friends
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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!
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crazymurdock reacted to a post in a topic:
Searching For Refractory Friends
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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...
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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...
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Hi jddh, Glad to see you are still keeping a good attitude. I am sorry you are still fighting the unknowns.
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ARCHIVED Scope and biopsy - lymphoma
crazymurdock replied to Booiegirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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... -
ARCHIVED Refractory celiac
crazymurdock replied to Leuconostoc's topic in Coping with Celiac Disease
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... -
ARCHIVED Refractory celiac
crazymurdock replied to Leuconostoc's topic in Coping with Celiac Disease
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... -
ARCHIVED Refractory celiac
crazymurdock replied to Leuconostoc's topic in Coping with Celiac Disease
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... -
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.
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ARCHIVED Refractory Celiac Disease
crazymurdock replied to sophi0547's topic in Super Sensitive People
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... -
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...
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ARCHIVED Suggestions On The Best Celiac Doctor/program In The U.s.?
crazymurdock replied to Integrous's topic in Doctors
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... -
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