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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? - 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

Noobette

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  1. I’m pretty sure I don’t have a flu or bug, since I don’t have nausea, vomiting, diarrhea, fever, malaise, or body aches. Just this damn pressure and bloating! I’m feeling quite a bit better the last couple of days, though - maybe it was the L-glutamine I started taking, or just time. i already eat a low-carb primal (paleo + dairy) diet, so pretty much no grains. Thanks for all the support and suggestions!
  2. I got glutened at a restaurant two weeks ago - I ate half a flour tortilla. This was the first time I’ve had a sizable gluten exposure since my diagnosis a couple of years ago. The other times I’ve accidentally eaten gluten (that I know of) was in small amounts (a few baked potato chips one time; salad dressing another time) and I had no symptoms. I was fine for the first couple of days, then the symptoms I had for months before my diagnosis came back: chest tightness, stomach tightness, bloating, and my bowels are a bit off. The symptoms are not getting better; if anything, they ate getting a bit worse. I think I’m luckier than most because my symptoms aren’t that bad, but it’s still a drag to feel icky all day. How long can I expect this to last? Are my symptoms all caused by inflammation? I’ve been drinking bone broth and ginger tea, and will start taking L-glutamine. Any other suggestions?
  3. Thank you @Megamaniac - I don't hear about chest tightness as a symptom of being glutened, so it's good to hear of someone else. My current symptoms aren't bad, just annoying. It's hard to tell if it's anxiety tightening my chest, or something else. But since it's only been happening since I ate that damn tortilla, my guess is it's gluten-related. My doctor made me have an echocardiogram and stress test to rule out cardiac issues before he would do the endoscopy (this was a couple of years ago). I learned that telling a doctor "my chest tightness gets worse when I walk up a hill" makes everything else grind to a hart until the heart gets checked out!
  4. About 10 days ago I think I ate most of a wheat tortilla (the restaurant stuck to their story that it was a corn tortilla like I had ordered, but I don't believe them - I'm pretty sure it was wheat). Nothing happened in the first couple of days, then I developed intermittent chest tightness, which was one of my primary symptoms before my diagnosis, the others being bloating, food sitting like a rock in my stomach after eating, exercise intolerance, and weight loss. Anyone else get chest tightness as a symptom of being glutened? I haven't felt this symptom since I became very strict with cross-contamination.
  5. I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.
  6. The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination. Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing. i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away. i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks. Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!
  7. I love Aroy-D coconut milk, although I use the canned kind. There are no ingredients which could contain gluten, so I feel very safe eating it - and I eat a lot of it. I'm not home so I can't check the label to see if it says "gluten-free" anywhere, but I certainly consider it safe.
  8. Cindy's Kitchen of Brockton - I've never seen this brand before. It contains soy sauce - not something I expect to see in balsamic vinaigrette!
  9. I would never have known the dressing contained wheat, except that my nephew really liked the dressing, found it at the store after lunch, bought it, and brought it home. I would also think balsamic vinaigrette would be pretty darned safe. Goes to show we have to be constantly vigilant.
  10. Surprise biopsy

    I am in a very similar situation. I tested positive for two of the celiac genes (2.5 & 8, IIRC), and stopped eating gluten proactively even though I wasn't having symptoms (that I recognized, anyway). However, I didn't separate stuff in my kitchen or worry about cross-contamination. I got sick a while later and eventually had an endoscopy which showed Marsh 1 - inconclusive results after being gluten-free for a year. I got strict and replaced all the wood and plastic stuff in my kitchen, and my symptoms went away. I've since struggled with whether to do the gluten challenge and find out for sure how careful I need to be, but so far I've decided it's not worth the risk. I end up telling most people I have celiac, just because it's easier than going into a long and tedious explanation.
  11. I went to a big lunch yesterday at a distant cousin's house who I barely know. I really hate making food restrictions an issue in situations like that, so I usually eat sparingly and selectively instead of asking lots of questions and drawing attention to myself. The salad had dressing on it already, but it wasn't a creamy dressing so I made a calculated assumption that it was safe. By a total fluke, I found out hours later that the dressing (balsamic vinaigrette) contained wheat. I'm pretty sure this was the dressing that went on the salad, but not positive. Anyway.... nothing happened! This was only the second time in two years I have swallowed something containing gluten (that I know of). I never had immediate symptoms even when I was chronically ill pre-diagnosis. Also my diagnosis was ass-backwards and inconclusive, but I'm not willing to take the risk of a gluten challenge to find out for sure. If I got glutened from balsamic vinaigrette dressing, I guess I need to be more careful. I just hate to be that guest who grills their host about every little thing. Celiac steals all the fun out of social eating.
  12. It sounds like you're past the experimental phase, but just in case… did you use gluten-free oat flour in your "control" spice mix? If it wasn't gluten-free that could confound your results.
  13. One of my only symptoms before going gluten-free was painful canker sores in my mouth, which I now get very rarely. I was already gluten-free when I first got sick (I stopped eating gluten because I have the DQ2.5 and DQ8 genes), so was unable to get an official diagnosis. My bloodwork was normal, but my biopsy came back as Marsh 1. I was not willing to put myself through a gluten challenge. It was at that point that I became strict gluten-free; in addition to not eating anything containing gluten, I replaced my cutting boards and cast iron pans and separated stuff in my kitchen. It only takes a few milligrams of gluten to affect your gut for weeks. If you are sharing cutting boards and a toaster, you are experiencing continuous cross-contamination. Try going strict and your mouth sores may be a thing of the past!
  14. The report states that everything appears normal on inspection, except you appeared to have duodenitis, which is inflammation of the uppermost section of the small intestine. Duodenitis is a very common finding and could be due to a variety of causes. You had biopsies taken of multiple areas, so when those results come back you will have an additional report which might show other abnormalities not visible to the naked eye.
  15. I am in a sort-of similar situation. I cut out MOST gluten several years ago when I started eating a paleo diet for general health reasons. My join pain and canker sores quickly went away. I was not strict and continued to eat wheat maybe once a month. Then I got genetic testing though 23andme and found I had both DQ2.5 and DQ8. This was a surprise, since no I have no diagnosed celiac in my family. I decided to cut gluten out of my diet completely; I had no symptoms to suggest I current had celiac, but I figured if I had no exposure, I couldn't develop celiac. Several months later, I got sick; lots of stomach and chest discomfort, fatigue, exercise intolerance, and weight loss were my main symptoms. Eventually I had a gastroscopy. I didn't expect any celiac-type results because I was gluten-free, but lo and behold, my biopsies came back as Marsh 1. That's not a definitive result, but the other possibilities were either ruled out with other tests or were very unlikely. I went to a gastroenterologist who told me she couldn't diagnose me definitively (my blood work was negative, as expected on a gluten-free diet). She told me I could either live as a celiac, or do the full 12-week gluten challenge and re-test. I decided that the risk of triggering a new autoimmune disease was not worth the risk. So I went all out: separated my kitchen stuff, bought new cutting boards, became that annoying person interrogating waitstaff and potluck guests. My symptoms went away. I have done a lot of other things to help my symptoms, though, so it's not totally clear that it's the gluten. I've only had one gluten exposure that I know of since then (Lay's baked potato chips contain wheat starch!), and it didn't cause any noticeable symptoms. I don't like having to be so strictly gluten-free without knowing for sure that it's necessary, but until there's a test with a considerably shorter gluten challenge, that's what I'm doing. Otherwise it's not worth the risk for me.