• Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

1 Follower

About trilobitian

  • Rank
    New Community Member
  1. Meeting Location Frustration

    This IS really terrible. I'm horribly disgusted by that treatment.
  2. I live away from my parents and currently live in Rochester Minnesota which houses the Mayo clinic so the amount of gluten free awareness in this city is abundant. (Which is really nice!) My favorite is Chipotle and has so far been the safest place for me to eat and I have not gotten sick. However, when I go home, I'm going to a much smaller city (~30,000) people and my parents absolutely love to go out to eat. They consider it to be a treat to take me out to eat when I come home to visit. However, pretty much every restaurant at home when told I can't have gluten say to me "What's gluten?" and it's the biggest danger sign that I can face! I have to explain very in depth to them but I have yet to eat at a place at home that seems to "get it right" Always getting sick! I've asked told my parents that if they want to treat me the best thing is to cook at home. They truly understand what's going on with me (even though I've only been diagnosed for half a year) and I can eat great food, worry free at home! Unfortunately, they still want to go out to eat all the time. We don't have any outback steakhouses and chipotles at home and I'm not home enough to make a big deal out of it to restaurants I'm going to visit once or twice a year. Any suggestions?
  3. Unusual Celiac Case

    Well unfortunately with the many attempts I've made with allergy doctors, they want to take me off of all my many medications that we use to keep my hives under some control so I am miserable for about two weeks straight. And then I go in to see the doctor and they don't do any allergy tests and tell me I don't have allergies. This has happened twice. But the allergy doctor I'm with right now at Mayo says that it isn't possible for me to have allergies because I have a total IgA deficiency and I guess when you have that you can't have allergies? I don't know. Because of the total IgA deficiency I have also been told I can't have DH. But since going gluten free, I have had two cases that looked and felt suspiciously like DH. I called my celiac doctor at Mayo on that and he was perplexed to say the least. Both he and my allergy doctor have both come to the same consensus that I can't have allergies and I can't have DH if I have an IgA deficiency. And that test is most certainly correct as we have taken the test for IgA deficiency about 5 times now (Along with the other parts of my immune system that have been showing to be dropping to deathly levels since last summer- SCARY!) Needless to say, I've got a new appointment with a dermatologist to determine if I am indeed having DH reactions- even though I don't go in until the end of August and the rash has cleared up already (even though it took about a month) I know that if they ask me to suffer off of my medications for two weeks again, I will be demanding that they actually do allergy tests on me, because I have suffered needlessly twice now and I refuse for them to play that game with me again.
  4. Unusual Celiac Case

    Thank you so much for that link! I will certainly talk to my doctor about it on Friday. I've had others suggest to me "The elimination diet" but when I tried to research it, I couldn't find anything very specific.
  5. Annoying Friends

    Oh my gosh I know what you mean!!! I have one friend who thinks you can "cook the gluten off" on like grills and stuff. That burning it off "kills it" and that even if someone touched my food after they touched someones bun without washing their hands that it wasn't "like it's that sensitive anyway" I feel bad that I have to say something so obvious like "you can't just kill off the gluten by raising the temperature because gluten isn't alive. The idea of sanitizing is for things that are alive. Gluten isn't alive or dead, it just is." And "yes, it is that sensitive. It can seriously hurt me." I get so frustrated!
  6. Hello all. I'm new to the forum (I have been perusing it for a few months now but never registered) I am 25 years old and was just diagnosed with Celiac disease in February. I started going to the Mayo clinic because I had chronic hives (the second time in 4 years that I have had these hives that just don't go away.) My doctor and I spent many weeks and months trying to figure out why I had these hives. In the processes we discovered my immune system was in really bad shape. And then one of my tests came back positive for celiac sprue. So I was transferred to a new doctor who did the upper endoscopy on me and declared that yes, I did have celiac disease. So I've been gluten free now since then. I went back to Mayo about a month ago and discovered that my immune system is not improving, it is continuing to drop. My hives area also not going away. We're beginning to think that these are not related to the celiac at all. I have found that I seem to have a sensitivity to Annatto. So I've cut that out of my diet. My hives definitely get worse after I have that. And now I'm suspecting soy. I've read that soy has been discovered to have a lot of gluten contamination from the GROWING process. Ugh. (This genetic modifying and monoculture the United states loves so dearly is out to kill us celiacs I swear) So now I think I need to watch my soy intake. As of now, I've had hives for over a year now, straight with only a few weeks here and there where I had some relief from them. My doctors are suspecting possible common invariable immunodeficiency and I'm going to be (hopefully) finding out on Friday if I do have that, and what it means for my medical future. (expensive- that's for sure) I used to work at an Environmental Learning center where our meals were served in a dining hall and I couldn't control all of my diet. I have found that one of the best things for me coping wise was to get my own apartment with my own kitchen. I know that it is cheaper to have roommates. But it was something I just could not deal with learning to cope with this diet and having to deal with roommates who want to have their own diet and all the possible cross contamination. I feel in control of my diet and I know that if I get a gluten attack, it was my fault and much easier to determine what caused it. It's also been a lot easier when I don't have to watch other people eating things I can't eat and smelling all that yummy food that I can no longer have. I'm so glad I was diagnosed after college though! I think college would have made coping with this disease TEN times more difficult. And it's hard enough as it is!!! Anyone else out there with some unique symptoms and other intolerances? Crystal