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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.

Noobette

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  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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!
  8. 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.
  9. 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.
  10. Hello! My son had a colonoscopy & upper endoscopy when he was in 4th grade. The worst part was getting the bowel prep into him - that was pretty traumatic for both of us! The next bad part is getting the IV in. After that, he will just take a nap and wake up when it's all over. Even though he is gluten-free, ask the doc to biopsy the duodenum anyway. I had been gluten-free for a year when I had my biopsies, and was surprised when they came back as Marsh 1 (probable celiac). I'm a GI nurse and assist with scopes most days, so I'd be happy to answer any other questions you have.
  11. I had the same biopsy results. This is a Marsh 1, the mildest positive result. Celiac is the most likely reason to have this finding, but it's not definative. Other reasons include: infection, medication reaction, H. pylori, Crohn's, intolerance to a food protein other than gluten, or other autoimmune condition. I can interpret some of this, but some is unclear. Here's my translation: Duodenum: possible sprue (celiac) Mild chronic gastritis (very common, some inflammation/irritation in the stomach) 0 h pylori - I'm not sure what the "o" indicates Colon biopsies all normal
  12. I had frequent canker sores for decades, starting as a very young child - basically as young as I can remember. They decreased dramatically when I stopped eating gluten.
  13. Vomiting With Celiac?

    My son missed 15 straight weeks of high school due to unrelenting nausea. He had lots of testing, all normal. There are a bunch of "functional" GI disorders ("functional" meaning that there is nothing structurally wrong and usually nothing that will show up on a test). His various diagnoses included functional abdominal pain, functional dyspepsia, and abdominal migraine. If you are having frequent vomiting, you could fit the criteria for cyclic vomiting syndrome. These disorders all seem to overlap substantially, are treated similarly, and are unfortunately not easy to treat. My son improved, but is still nauseated most days. If you can't find anything wrong with testing, look into the functional disorders. I hope you find some better answers, though - what you are going through sounds just awful. Hang in there!
  14. Cant Even Cook With Gluten?!?

    Flour is so fine, it can be impossible to work with without it going airborne and then settling on everything in the kitchen. If there's flour dust all over, you will ingest some of it. Lots of the resources I've read recommend banning flour from the kitchen entirely.
  15. Using Coconut Flour

    Coconut flour is VERY different from any other kind of flour! Don't try to substitute it for other flour in a recipe because it's so different that the recipe needs to be adjusted a lot. Coconut flour soaks up a ton of moisture. Typically you use a small amount of coconut flour and lots of eggs. Or it's mixed with other flours in a recipe. I tend to follow recipes pretty closely when baking, and especially so when using unfamiliar flours. That said, I just baked something with coconut flour tonight: plantain biscuits!