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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 mhb

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  1. Hi, I have gotten my EnteroLab results back. Recently there was an article at the New York Times (Can't find it now) about how inaccurate testing blood for antibodies to different foods is for determining food "allergies." Apparently skin tests are more accurate. The New York Times article had said that the problem with testing for antibodies in the blood is that sometimes the immune system will mistake one food (protein) for another that it is sensitive to, thereby producing antibodies to a food it is not sensitive to. This made me wonder, since EnteroLab also tests for antibodies, are there potential problems with their tests being inaccurate also. I know EnteroLab says that their tests are a lot more refined and sensitive than blood tests (they catch these problems before they even get in the blood, etc.), but does that just mean they do a better job making some of the same mistakes as the blood tests? Or does the immune system make fewer errors in the intestine then in the blood for some reason? Also interested in any comments about my results below. I realize no celiac genes. At one and half years off gluten and dairy (known reactions to gluten are digestive and endocrine (HPO axis)): Anti-gliadin IgA: 16 Anti-tissue Transglutaminase: 12 Fat score: <300 Anti-casein: 11 Anti-egg IgA: 8 Anti-yeast IgA: 7 Anti-soy IgA: 17 HLA-DQB1 0603 HLA-DQB1 0604 [HLA-DQ 1,1 (subtype 6,6)]
  2. I've been off gluten for 1.5 years and casein for 1 year, except of course the occasional screwup. I'd been hoping to reintroduce casein after a year, so I started with a goat milk yogurt (goat and yogurt forms supposed to be easier to digest). Well that was the end of it. Immediate reactions were slightly gurgling stomach, bronchial congestion and gas. Two mornings later loose stools. I don't know if it's lactose or one of the proteins, but before going dairy free I didn't have all these symptoms to it, just bloating, so I suspect it's a protein.
  3. Hi, I never find much explanation of the connection between ammenorhea/infertility and gluten, but the association is commonly referred to. I don't think they understand the connection, but the theory is that gluten mounts an autoimmune reaction somehow affecting reproductive hormones, perhaps affecting a gland that produces them? I was treated for PCOS for years. Went off those meds same time I went off gluten. Voila, regular periods. it seems when I get get glutened my period is late, but within a week because other than errors eating out, I'm gluten free over a year now with timely periods. Turned out the casein in dairy caused the acne that was also attributed to PCOS, so I'm off dairy too.
  4. Sa-bai Thong, Madison

    My understanding is that the only 2 gluten-free dishes there are #49, Yum Ta-Wai, and # 52, Seeda Longsong, but I haven't tested them out.
  5. Vietnamese Cuisine

    What are the noodles in pho made of, or do you ask to leave them out? If the latter, do they remove them (cc) or just not add them in?
  6. I've been gluten-free for about three quarters of the year, and dairy free since about September. The gluten free diet remedied lifelong amennorhea, and the dairy free diet relieved my lifelong acne. Recently I started using butter on bread, thinking that it was very low in casein and may not pose a problem. But I started to get some strange bumps around my back and shoulder. They do not look like dermatitis herpatiformis, and they do not act like pimples. They itch before even showing up that much, and then I get the bumps in clusters, but if I keep trying to scratch they hurt. They don't itch terribly. They're fairly easy to ignore but I also notice some general transient itching in other parts my body where no bombs have appeared. I never used to have this sort of reaction to dairy, but I am wondering if it could be the butter. Has anyone had *new* symptoms relating to dairy after reintroducing it? These bumps also do not resemble eczema. I don't know what they are like. Any thoughts?
  7. Sushi?

    Sushi is a great stand-by for me! I just make sure they've used rice vinegar in the rice (I heard some alternatives to that can have gluten). So far not one restaurant has used the alleged alternative. Then instead of using soy sauce, or even wheat-free soy sauce which some have, I ask for lime wedges and squirt lime juice all over it. Delicious. Gives it a slight ceviche twist. Some Japanese restaurants use corn starch for their tempura, and if it goes in a dedicated frier (one place I visited did) that can be safe too! They could probably grill salmon plain in it's own pan, or if they're sophisticaed on the gluten issue could make a gluten-free sauce. But I usually head straight for sushi. Now, some sushi, like eel, probably has wheat in that terriyaki type sauce on it. And special rolls often have something possibly wheaty in them. I usually just get one order salmon or tuna or something simple, then complete the meal at home or eat an apple in the car.
  8. I wonder if it's all that linear. Do we have reason to think villi destruction is "end stage" as opposed to just one manifestation, more like a spoke on a wheel with gluten at the center?
  9. Sometimes tempura is made using corn starch rather than wheat. As long as the fryer didn't have gluten items in it that may work if you can communicate it to them. Call ahead if you can so you know what will work. If tempura, eat well before going and just have vegetable tempura. You could check the soups, but they may all have wheat.
  10. Anyone know if this has gluten? It was all I had on hand when I had my first major D attack ... 5 days after eating gluten. I'd had 2 days (apart) headache and a major emotional outburst in between. It seems my reactions are different with different glutenings, and changing over time. I never had the D reaction before. It's not a bug because I feel totally fine since. More like a last hurrah! I know I got gluten 5 days ago. No dx for celiac, but I'm certainly more suspicious than ever. I had thought me new headache issue this year was hormonal ... maybe not.
  11. Yea, a brilliant breakthrough in terminology! I like this structure, but I would go one step further and say: gluten autoimmune disease of the intestines, aka celiac gluten disease of the nervous system gluten disease of the reproductive system gluten disease of the skin gluten disease of the kidney gluten disease of the thyroid gluten disease ... fill in the blank [can we put "autoimmune" in all of those with certainty?] It doesn't matter the known and unknown mechanisms (microorganisms, enzymes, immune cells ...) for purposes of communicating at restaurants, with family and friends, etc. It matters we take ourselves seriously first, and others take us seriously second. That way classic celiac stays what it always was, and the rest of us are not celiac, not gluten "sensitive," not gluten "intolerant" (the latter two being too descriptive of personality in everyday usage) ... we have "gluten disease of the ..."! Wouldn't we be taken more seriously? And all this focus on getting dx through endoscopy - only *really* relevant for gluten disease of the intestine/celiac - can be supplanted with the diet gold standard. If your symptom goes away off gluten you have "gluten disease of the ...." We don't need endoscopy to be taken seriously by ourselves or others, though it isolates for some that gluten/celiac is the cause of their digestive distress. You see it's all been a problem of language and I couldn't wrap my brain around it. While I respect the ***slooooow*** role of the science community in getting a grip on all this, in the near term patients need to take charge of how this disease is articulated. The medical community, in large part, is too busy and detailed to get the big picture, often not seeing the forest for the trees. They don't know what fallout we experience by them choosing to label many of us "gluten sensitive" and "gluten intolerant." We on the ground are getting the big picture and paying a price for the knowledge that we no longer need to pay. We have to fix this problem of communication. As another poster said on another thread, you are not looking for a dx of celiaac, you are looking for a correct dx. Can anyone improve on "gluten disease of the ..."? I am ready, never having had an endoscopy, to confidently inform people that I have "gluten disease of the reproductive and digestive systems," but I think it'd be great to get a bunch of people, if others agree, to start a movement together so there's language consistency in a new communication of our issues that will serve us better. I guess the only problem I'm spotting with this is the unknown of when gluten *causes* a "related" condition and when it is just the same gene predisposing to both. How 'bout: "gluten-related autoimmune disease of the ..." A little wordy but ...
  12. Boy, if all these responses don't illustrate my original point. There are so many ways people use all the terms, and different assumptions they make when they use them, that we are not - truly - all having the same conversation ... medical community and online forums alike. I believe we have a situation here ;-) But what to do about it? The main celiac research centers, it seems to me, should do a better job of elucidating it all, but I think they don't because they don't know much. And what about the major gut-health/health variable of gut neurotransmitters and nervous system? No question this must play a part, but I hear no mention of it. See http://www.lisaannmarshall.com/Stories/HTNOV.pdf : "With 100 million-plus nerve cells (more than in any other organ, including the spinal cord) and a prolific chemical factory churning out all the same neurotransmitters found in the brain (including more than 90 percent of the body
  13. I think this is really important, that I don't think we know, to my knowledge, how much of the conditions strongly associated with celiac are associated because they are both caused by gluten, or they are simply two (or more) conditions one is predisposed to by the same gene(s). I have read that the high rate of type 1 diabetes concurrent with gluten is due to some of the same genes being involved, not necessarily that gluten caused the diabetes. And, to weave in the microorganism byproduct line of thinking (although I don't personally think anything boils down to one cause), it's possible those genes cause specific immune reactions to microorganism byproducts as well as to certain food-related proteins. Have any major networks/shows covered this issue at all, more than quite a quick "health minute" type of disservice? I'd like to know who and when so i can try to pull up an archive and see how the issue was treated.
  14. Anyone know why my info to the left says "Warn 0%"? No one else here says anything like that???
  15. Sorry you saw it this way, because I think we're all or mostly on the same page about this, but it illustrates my original post perfectly ... that just *using* the words intolerant and sensitive *sounds* less serious than *celiac* even in a community that for the most part I think knows better (other than maybe those new to it all?). I've had a concern that discussions about all this here and in the medical community are doing a disservice to community knowledge, maybe unintentionally, but with negative repercussions. I would go so far as to say that if one can't say for sure they have "celiac" they face potential and often real stigmatization of being a drama king or queen. All while failing to communicate to the public the larger gluten story historically and why it affects so many and that there's a LOT we don't understand yet, and that *anyone* who says gluten affects their health should be taken *very* seriously even if they are not dx celiac. Where is that message getting to the public? Should we all bombard Oprah to do a show?