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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 ellen123

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  1. Thanks, everyone, for your great suggestions. I'm not sure which one I use but if whatever I do comes out successful, I'll let you know. Ellen
  2. Does anyone have a tried and true stuffing recipe that's gluten-free but also doesn't rely on cornbread? I have family members who have multiple food allergies (corn, casein, eggs) in addition to gluten intolerance. I've tried two experimental stuffings so far (stuffed a chicken each time) using gluten-free bread made primarily from brown rice flour and no corn (or dairy or eggs) but the texture is mealy and yucky, which was kind of predictable given how most gluten-free breads have a tendency to be dry and mealy. I'm thinking of experimenting with gluten-free crackers instead to see if that improves the texture, but I'm running out of time, and these experiments are getting expensive!
  3. I'm not sure if this links to the same article but my son just sent me this link to a Chicago Tribune article about Whole Foods labeling issues. http://www.chicagotribune.com/news/chi-112...,0,241722.story Ellen
  4. I have not sought an official diagnosis because, as a retired lawyer with a lot of negative experience with the insurance industry (and also as someone who knows from personal experience how tenuous health coverage is when you're not in a group plan), I don't want to take the chance of being denied coverage, or terminated from my individual plan, now, or somewhere in the future. I also have a long-term care policy which I may not have gotten if I were diagnosed. I don't need the official diagnosis: I am 99.9% sure I have celiac disease, both because of the nature of the symptoms I've had and my miraculous recovery from most of them since I became completely gluten-free last February. If I seriously need to test the waters, I can always revert to a gluten-filled diet and see what happens. But why bother? I'm so incredibly relieved to be without the pain I had (and the dermatitis herpetiformis that drove me crazy with itching), and eating gluten-free is not that difficult once you get the hang of it -- well, at least for those of us whose kids are no longer living at home. So I can't see the advantage of a diagnosis as a general rule. There may be specific situations in which it might be helpful or necessary.
  5. Sunblock From A Chair Cause A Dh Rash?

    Are you sure there's not another cause lurking out there? For instance, many DH sufferers find that iodine (such as in iodized salt, shellfish, seaweed) and NSAIDs such as ibuprofen, advil, etc. aggravate the rash and can cause an outbreak. This appears to be the case for me, and I've read similar comments on this forum.
  6. Red Ichy Bumps That Look Like Bug Bites

    Many people on this forum who have those itchy bug-bite-looking bumps say it can be DH. I have them too, and although I haven't had them biopsied, I believe it's DH. I had it only occastionally, a couple of times a year maybe, before I went gluten-free. Since becoming gluten-free last winter, I now get the bumps much worse if I accidentally ingest gluten (I get more of them, for a longer time). and it's also aggravated (in me, and in others on this forum) by iodine in salt, shellfish, seaweed, and also by NSAIDs (non-steroidal anti-inflammatory drugs, such as ibuprofen, advil, motrin -- maybe even aspirin). To relieve the itching, try applying moist teabags directly to the rash (regular black tea like Liptons). It really helps me. Sometimes it makes the difference between being able to sleep and staying up scratching. Good luck. Ellen
  7. I am happily gluten-free since February 08. My severe daily neck pain is gone as are the frequent migraines associated with the neck pain. Peripheral neuropathy is improved, although not completely better. DH has gotten worse if I get cc'd (or it could be from seaweed, iodized salt, or shellfish, which I now try to avoid. The only problem I'm having is that I now have gas and stomach bloating, which I didn't have before going gluten-free. In fact, I had no GI symptoms before. Any ideas about what's going on?
  8. Does Dh Always Equal Celiac?

    I have DH and neurological symptoms but no GI symptoms. I haven't had a biopsy or endoscopy so I don't know what my villi look like. I consider myself to have celiac disease based on the fact that I have DH and neurological symptoms and that a gluten free diet has dramatically improved all symptoms overall in the 4 months I've been completely gluten free. Both the DH and neurological symptoms come back pretty quickly if I've been glutened (the DH within hours, the neurological stuff within a day). For the most part, if I've had an accidental ingestion of a small amount of gluten or get cc'd, the DH appears in a few places and the itching goes a way in a few days (the red bumps stay longer). From time to time I get a small outbreak of DH even without gluten -- I used to take ibuprofen and that set it off; or if I have a lot of seasalt or iodized salt, that sets it off as well. Once in a while I get one or two itchy bumps somewhere and have no idea why. On the sole occasion that I ate a lot of something that I thought was gluten-free but later learned was not, I had a major outbreak of DH that covered a lot of places on my body and lasted 2-3 weeks. That was the exception, however. I'm waiting for the day, somewhere down the line, when the DH will be almost non-existent.
  9. Wow, that's really good to know. It's amazing what I've learned from others on this site in just a few months! Thanks. Ellen
  10. First, HAPPY BIRTHDAY, Ursa. I'm also 55, so haven't quite made the 60 mark yet. I haven't been gluten free for that long, only a few months, but I am still mystified by the sudden onset of symptoms when I cannot for the life of me figure out how I could have gotten glutened. I tend to feel like the many good days I have are lucky, but I've stopped questioning why some days I don't feel well -- it took me years to get damages, so I guess it'll be a long haul reversing that.
  11. According to Dr. Peter Green [Celiac Disease: A Hidden Epidemic], If you have a positive diagnosis of dermatitis herpetiformis, you have celiac disease. And you must adhere to a gluten-free diet no matter how "normal" your intestine may appear. (Emphasis his.) There is no other known cause of DH other than celiac disease. Apparently the only really reliable way to diagnose DH is through a skin biopsy taken near, but not at, the site of a DH lesion. A skilled dermatologist should know how to do it. Dr. Green says there is another, almost identical disease called "linear IgA disease" and a biopsy will reveal whether it is DH or the other. Having now learned that a diagnosis of DH means a diagnosis of celiac disease, I am still reluctant to get a skin biopsy for the same reason I expressed earlier: while I want to educate my doctors and I also think it's probably wise to protect myself with some sort of "gluten intolerant" note in my records, I don't want to be denied insurance or have any kind of celiac-related symptoms excluded from coverage. Health insurance is supposed to help us with access to medical care, not punish us for getting sick -- but that's not the reality at this point.
  12. That sounds like a good idea. Or maybe I can have them write "allergies: wheat, barley, rye." I'll give this some thought. Thanks.
  13. Weight

    I've been gluten free for about 3-1/2 months now and I also noticed I was gaining weight. In addition to the explanations above, I found that I was eating a lot more carbs than I had been before and I'm guessing that contributed to my weight gain as well. In my effort to find gluten-free foods, I was relying a lot on rice and noodles for both lunches and dinners, plus rice crackers, gluten-free toast for breakfast, even noodles or rice crackers for snacks. And like the others, I found I was hungry earlier in the day after breakfast. My stomach began "growling" by 11 a.m. or even earlier. I am now trying to cut down on the carbs a bit, trying to eat more salads and protein at lunch time and saving the noodles, rice or potatoes for one meal at dinner, cooking a lot more vegetables and eating less of the carbs even at dinner. I've been using fruit or vegetables for snacks too. So far, I haven't notice big differences on the scale but my body seems to be redistributing a bit for the better. If you're eating a lot of dairy I'd cut down on that too. If you're ready to deal with the weight gain, those are my suggestions. On the other hand, many people feel deprived at first when they go gluten-free, so you may want to just let yourself get used to that before reducing carbs or doing anything that will make it harder for you. Good luck! Ellen
  14. Thanks, Yolo. Please see my reply to Ursa's comment for the answer to why my doc hasn't noticed that I'm feeling better now. In short, I don't go to doctors unless I'm scheduled for my 100,000 mile service, or I feel like I'm dying. But you're right. It feels like my doctor should be informed, not so much for any reason I can think of but more so for the reasons I can't think of. What if I wind up hospitalized and they feed me some kind of gluten-laden intravenous solution or something? (If there is such a thing. . .) In any case, this insurance system in this country stinks, doesn't it?
  15. Thanks, Ursa Major. In fact, it was your comment on another thread that made me understand for certain that I do have celiac disease. I am positive I have dh, but no, I have not been tested. I am a person who seldom goes to doctors. In fact, in spite of years of pain in my neck, for the most part I didn't seek treatment, as on the few occasions when I mentioned it to doctors, they didn't seem to take it seriously or know what to do -- so I just coped with it. I tend to be kind of stoic about pain and I don't have much confidence in western medicine as a rule. After I developed peripheral neuropathy in addition to increasingly unbearable neck pain (for which physical therapy did nothing), I researched, learned about celiac disease, and treated myself with a gluten-free diet. Before that, I always thought of myself as a really healthy person who just was unfortunate to have a bad "weak spot" -- my neck, which has given me 25 or more years of chronic pain and frequent headaches. I will look into Enterolab relating to my daughter. Thanks again. Your replies are always helpful. Ellen