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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 along with the group at Chicago's Celiac Center and at NIH.
  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. After I started going up to 22 times a day and had went from 250lbs to 179lbs in 3-4 months, a new gi doctor performed another endoscopy and did the additional specialized tests that came up with the Type 2 celiac disease in May of 2014. I then participated in the Mayo Clinic's Hu-Mik-Beta-1 antibody trial in 2014-2015, and the AMG 714 trial (2016-2017) for Refractory Celiac at Columbia University. With the Hu-Mil-Beta-1, I was getting better but then started developing antibodies to their antibodies and had to stop the trial before completion. When they performed the final endoscopy for the exit of the trial, the biopsy results did show normal villi, normal intraepithelial lymphocytes, and a normal T-cell population (happy dance), so I was taken off of Budesonide that I had started on in mid-2014. Less then one year later however, I was in the hospital for 4 days with IV's in both arms with calcium, potassium, magnesium, and prednisone dripping in. I had to have additional infusions of potassium and calcium for 4 months after and continued an oral prednisone for two years. During the hospital stay, they also had me start back on the Budesonide. My biopsy came back with complete villous atrophy, abnormal intraepithelial lymphocytes, and the subsequent test that showed the clonal t-cells were back again. So the Type 2 celiac disease was back. At the time of the hospital stay, my calcium level had dropped to 5.4 which seem to of have started a chain reaction with my parathyroid. Since 2016, I had been on 1,800mg of calcium a day and my calcium level slowly creeped up. I was at 8.2 in November. From a bone scan in May, my previously diagnosis of Osteopenia had progressed to Osteoporosis and my primary care doc wanted me to start meds for it. It didn't feel right, so I refused and he asked if I would go to a arthritic doctor. I agreed and went to him and from looking at all the test results, he said if I was a 75 year old, he would immediately say I had Osteoporosis and would want me to start an osteoporosis drug but with me at the age of 45, was hesitant. I told him I preferred not to go on one because I was already on 20 pills a day so he asked if he could run some labs. Later that evening, he called and said he wanted to send me to an endocrinologist because my parathyroid levels where high. I went to the endocrinologist and after some tests, he came up that I had Secondary Parathyroid Disease which probably was caused from the Celiac Disease and the treatment would be to add an additional 2,000mg a day of calcium. He also said that it would of been a big mistake if I had gone on the Osteoporosis drug before the parathyroid issue had been resolved. So, I have been on 3,800mg a day since November. I go back next week to retest my levels. With the AMG-714 trial, turns out I received the placebo. In addition to the Celiac and high liver levels, the last two years I have also had 4 dvts in my left leg, Venous Insufficiency in both legs, the parathyroid issues, and type 2 diabetes. To maintain lab levels, I do take a B12 injection once a month, one multivitamin, iron, magnesium, calcium, potassium, folic acid, vitamin c, budesonide, 81mg of aspirin, metformin, vitamin D3, Omeprazole, and Zinc for a daily total of 22 pills. My ttg antibody levels have been normal and are being tested every 6 months. I did have another endoscopy in November and I still have damage in the gut, abnormal lymphocytes, and the t-cell analysis shows the same type population as it was in 2016. Good news is the T-cells didn't seem to get worse! Bad news is the diagnosis are starting to pile up. Despite all the above, I still work 50+ hours a week at a papermill to help support my family but mainly to push myself physically. I average around 4.5 miles of walking a day during a 10 -12 hour shift, provided that I wear my compression stockings. Being there for my family and especially for my daughters is what helps me push to not give up and hope for a cure.
  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, so it is rare. There are two subsets of Refractory - Type 1 & Type 2. Type 1 can be usually treated through diet - like the Fasano Diet that was suggested above. Type 2 is not so easy. The attached link is from The National Institute of Health and explains some about RCD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/
  7. crazymurdock

    Refractory celiac

    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. https://www.hindawi.com/journals/grp/2013/518483/
  8. crazymurdock

    Refractory celiac

    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 and that it was probably a mistake to have taken me off of it the first time. I am slowly weaning off of the Prednisone now. A year ago April, I was hospitalized for 4 days and giving iv calcium, magnesium, and potassium along with iv prednisone. Once out of the hospital, I was on 80 mg of prednisone for a while and I am now down to alternating between 10mg and 7.5mg. Like you, I already have osteopenia and there are concerns with bone health among other things. Have you or the docs looked at the meds you take and how they may interact or could hinder each other? The iron blocks the ability to absorb calcium so they have me taking them hours apart. The same with taking Omeprazole and magnesium. How is your albumin level? I was asked to drink 2 protein shakes a day to try to build it up. Like you I eat a lot of eggs and plain baked meats.
  9. crazymurdock

    Refractory celiac

    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 had enough time to heal enough before the mishap at the awards ceremony that this is just a short reaction. You mentioned taking supplements and named Vitamin A & D. Have you monitored your calcium and magnesium levels also? Three years ago I was diagnosed with Type Two Refractory Celiac Disease - 11 years after being diagnosed with Celiac. I was put on Budesonide. I traveled to Mayo Clinic to see Dr. Murray and participate in the Humanized Mik-Beta-1 Monoclonal Antibody study. I started to develop antibodies to the treatment so I had to drop from the study. The treatment I did get seemed to work and reversed the clonal t-cells and intestinal damage. I was then weaned off the Budesonide. Then one year later, it all returned. For the last year I have been on Prednisone and Budesonide and having to take large doses of calcium, magnesium, & potassium to keep from being hospitalized. Last fall, I went to Dr. Green at Columbia University and was one of 22 people in 5 countries who qualified to partake in the AMG 714 study. I have asked both doctors about what they thought causes refractory celiac disease and they both have said that they are not sure of the specific triggers but that the general thought for Type One was long time ingesting small hidden sources of gluten. That is why to qualify for any of the RCD studies, there are so many tests, medical history questions, and examination of your diet to rule out gluten.
  10. crazymurdock

    Celiact Vitamin Support

    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.   
  11. crazymurdock

    Refractory Celiac Disease

    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 in 2003. After the first diagnosis of RCD type 2, I was put on a daily dosage of budesonide and the 11 years of diarrhea finally ended. I am enrolled as a study participant with Dr. Murray at Mayo using the monoclonal antibody therapy - and now have been reclassified as type one. After the last treatment in October, I am happy to say that I am back to the weight I was before all I had lost January - May of last year. My color has returned and my energy is slowly coming back. My biopsy from November’s endoscopy was night and day difference from the one I had in August. I hope you have success with your study.
  12. 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 that diagnose up till this June when they started me on budesonide, I endeared diarrhea every day despite a gluten-free diet.
  13. 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 in Asheville, NC. After experiencing some concerning health issues, and after many tests my diagnosis of 11 years of celiac disease was upgraded to refractory celiac disease with clonal t-cells, something the Asheville doctor hadn't seen but once in 20 years and said I needed to be treated by a celiac center and felt Dr. Murray was the best option and he hoped that I would qualify for a study that they are running to treat rcd. If you google or youtube search for Dr. Murray, there are several informative videos that he has posted on celiac disease, rcd, and gluten issues.
  14. 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

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

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