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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 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


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About eerickso

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  1. Thanks. It's been a roller coaster lately. I was put on prednisone for the short term but I couldn't tolerate the side effects for more than 3 days. I'm hoping the longer term drug is able to kick in fast. I finally did have a relatively good day today and even got out into the sunshine for a couple of hours. Hoping this sticks and I don't do my normal one step forward, two steps back!
  2. Well, had my colonoscopy today and the other boot dropped, so to speak. He thinks I have Chron's (there are discontinuous ulcerations and edema throughout the colon) althought it could be UC. Biopsies should help determine which, and I also have an order for a blood test. I'm so tired of the pain, nausea and fatigue and beyond exhausted from trying to find something I can eat without doubling over and running for the bathroom. I'm on a number of drugs now that hopefully will start helping to calm things.
  3. Thanks. I'm still having a rough time and my doctor wants to also test for Chron's and ulcerative colitis. Nothing would surprise me at this point.
  4. Makes sense based on what seems to have happened to me. Thanks!
  5. Thank you all for the responses. Sometimes I just want to collapse and cry each time I'm dealing with something new. So much of the recovery feels like one strong forward, two steps back. I do know my iron - and probably lots of other things - is low. I plan to follow up with a nutritionist next week. Chris, thanks for sharing your experience. It sounds very similar. I do hope it's just part of the healing/withdrawal/detox process! I talked to my doctor yesterday and he said to eliminate all dairy (I've already eliminated most). One day at a time ...
  6. I've been feeling the same way. My brain fog seemed to lift pretty quickly but I've definitely had some tough days since going gluten-free over the last couple of weeks. I've now added dairy to my banned list and am starting to see a bit of improvement but it is all very gradual. I'm still getting cramping and still wake up in the middle of the night with pain. The main difference is that I'm not cramping up every 15 minutes between 6 AM and noon; now it's just a couple of times. Hope you (and I!) start feeling better soon!
  7. Yesterday my tongue was feeling very swollen and almost like I had burned it. Today I have a blister under my tongue. I've had burning sensations over the last few weeks. I've been sticking to a gluten-free diet for almost two weeks. Do the current mouth and tongue issues mean that I'm somehow still being glutened?
  8. Reading about the difficulty of going back on gluten after being gluten-free for a period of time, I'm wondering if this is what I've unknowingly done to myself. I've had vague / intermittent symptoms throughout my life. However, last December I went on a high protein diet that basically excluded grains, high carb veggies, dairy and fruit. I felt better than I had in years. When I went off the diet, I phased dairy, fruit, and grains back in and that's when my symptoms hit like a freight train. I lasted a month, just eating one serving of dairy, fruit and grains per day before seeking medical help. The symptoms exacerbated throughout this period and for the weeks afterward. I'm thankful that I've now gotten the testing behind me and am once again gluten-free but I'm wondering if my 'cleansing' myself of gluten while on the diet had something to do with the extreme reaction I had when I reintroduced it. For those of you who are doing or have done a gluten challenge, are/were your symptoms worse than when you used to be eating gluten regularly?
  9. I'm about a week and a half into being gluten-free and I can tell that it's going to take awhile to start feeling like my old self again. The intestinal distress is still there but the urgent episodes have dissipated somewhat. The fatigue and nausea are still very much present and I've decided to stop trying to keep everything covered at work and just give myself some time to focus on resting and healing. Trying to work full time - even via telework - was wearing me down. As it was I probably pushed it more than I should have. After reading more on this forum, I decided to eliminate obvious dairy from my diet (primarily my morning yogurt) and do think that is helping. I've also started taking sublingual B12 and probiotics. (I was already taking a multivitamin, Biotin, and Vitamin D - earlier tests had shown me to be deficient in D.) I think I'm going to put a high priority on finding a nutritionist so I can better focus on ensuring I get the nutrients I need. Right now I'm not feeling like my body has the capacity to do that on its own. It's kind of ironic that I've struggled with my weight for years and never thought I'd be one to worry about maintaining my weight but that's where I am right now. I weigh at least 25 pounds less than I've weighed at any point in the last 20 years. Anyway, not too much new but wanted to give a brief update and let you all know I'm appreciative of all the great info here.
  10. Thanks. Today was rough. My morning was easier than many but I had more afternoon issues than normally and now am just exhausted and constantly nauseous. On the plus side my doctor called about my CT scan results and although there are a few things to watch nothing truly serious showed up. At least I'm *only* dealing with one disease so far. ;-) I'm off to read more about the healing process so I know more about what is reasonable to expect. Thanks again to you all for the feedback.
  11. Thanks! Two things noted on my endoscopy that we're visible to the naked eye were a number of "mini ulcers" as well as scalloping of my intestines. After two and a half days gluten free I'm feeling better in general but still have a lot of intestinal distress particularly in the mornings and overnight. I guess it would be a bit much to expect my intestines to repair overnight. :-)
  12. Exactly! And that's even what I said to my doctor after seeing the blood test results. On the other hand, I am a little concerned about a comment he made about there having to be something else going on if the biopsies are negative since my blood work was so out of and there were some abnormalities noted on the endoscopy. In a way it would be nice to have the diagnosis all wrapped up and all of the symptoms explained - and of course to have them go away. At least there's to CT san to help look for other things in the meantime and I figure its a good thing that I haven't gotten a call in that regard. I also suspect there will be another colonoscopy in my near future unless I start getting better. I'm thinking I'm going to have to stick to very simple food choices since in the last several months the only obvious gluten in my diet has been an English muffin once a day and I was still quite sick. So far at least I'm not having to deal with nausea after eating although my intestines are still a mess. Guess its just going to take awhile. I'm glad this forum and all of you are here to help along the way!
  13. Well, the endoscopy is behind me so now I just need to wait 2-3 weeks for the results. Either way the doctor said I had to start 100% gluten free today and I'm looking forward to finally starting to feel better. I had planned to change my diet once the testing was done anyway; I'm tired of being sick. As it was I couldn't bring myself to eat much more than an English muffin each day during the testing. I can't imagine how sick I'd be if I were someone who normally ate a lot of breads, cookies, pasta, etc. My doctor pointed to some abnormalities in the photos taken during the endoscopy, but said that the biopsies and what was seen under the microscope would be the true test. Either way, the bottom line is the same for me - and even if it comes back negative, I'm going to suspect that it's due to the fact that I don't have much gluten in my diet to begin with. Apparently for me, a bad reaction doesn't take much!
  14. Thanks! I'll be back with a full report. It's funny to be hoping so much for a clearly positive set of test results.
  15. Thanks so much! I'm lucky to have been able to get the testing scheduled pretty quickly once I finally narrowed down my own search for a dignosis and went to the right doctor. I had actually started with my GP and then a neurologist (due to all the whacky neurological symptoms I was having) and it seemed like the latter wanted to test for everything *except* celiac. I've been trying to piece this all together for quite awhile now.