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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

crazymurdock

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  1. 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/
  2. 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/
  3. 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.
  4. 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.
  5. 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.   
  6. 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.
  7. 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.
  8. 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.
  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?

  11. 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.
  12. I am hiding out in the Waynesville area- not far from mile marker 20 on Interstate 40.
  13. 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 and had lost a lot of weigth to quickly. In 4 months time I was down to 230 lbs - a lose of 50 lbs. I finally got an apartment down there and was able to shop and cook for myself. I then gained everything slowly back - faster after completing my job assignment and then starting school. Erik
  14. 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 again! Erik