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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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  1. I fixed it! You open a Firefox tab and type about:config in the address bar. Click "I'll be careful I promise". Then you find these four items: dom.push.enabled dom.webnotifications.enabled dom.webnotifications.serviceworker.enabled dom.push.connection.enabled Click on each of them to change them to FALSE. For now the problem is fixed. Let's hope Firefox doesn't reset it to default their next update or whatnot. Sheesh.
  2. Yes but in there it gives me the option to enable browser notification but there is no option to disable the box that pops up asking me over and over again on each page. You would think having it in the settings would be good enough, or the pop up box should have an option to "not show this message again". It's annoying enough to possibly drive me away from the site. PS edit: It's definitely a Firefox problem, I tried Chrome and it's not there, even the notification enable box in the account settings is not there. I will have to use Chrome to use celiac.com or I will quit Firefox altogether. It used to be great but this isn't the first thing it's done lately that drives me crazy.
  3. I'm not talking about having agreed to receive notifications, I'm talking about the box that pops up asking me if I'd like to request notifications. It's got a flag in my address bar and I can't make it go away in my Firefox settings. It pops up every time I open a new post even if I click on "not now". I did about:config and set the dom.push.enabled to false and that also has not got rid of it. Any ideas?
  4. Teeth hurt and headaches, very likely you are clenching and grinding your teeth in your sleep. This can cause constant daily headaches, tooth and jaw pain. A good night guard should be fitted by a TMJ specialist (even if you don't have TMJ symptoms, like clicking and popping in your jaw joint, this type of doctor should fit you). If you want to try something first just buy one of the cheap night guards at a pharmacy or grocery store that you heat in water and fit yourself. You will know quickly if it helps your headaches and tooth pain. Oily stool can be a sign of something wrong in the GI tract and you definitely should be investigated further for not just celiac but a number of other digestive conditions. I agree completely with the advice to consult a dietician.
  5. She needs to find some other thing to obsess over. Saving people in communist countries is hardly the ONLY charitable thing available. Surely there are people in her home country that could use humanitarian aid and Christian saving. It sounds like she has got hold of this idea in her head and won't consider alternatives. It might work out for her but if she is a positively diagnosed Celiac and knowingly goes into a country where she will have little control over the quality of her food (in or out of prison) then her ambition to do this thing is bordering on pathological because she is discarding her own health in favor of the idea.
  6. Wow you are right, I see it now!!! DARN... I've been taking them. No wonder my stomach is still all screwed up. (Plus I haven't been able to scrub out my cabinets yet, or go through all my lotions and toothpastes and whatnot. I have a whole large box of supplements I'm going to have to probably throw out.)
  7. I have a bottle of Dr. Mercola Complete Probiotics and it says it is gluten free, also free from dairy, corn, soy, yeast and eggs. Dr. Mercola's Whole Food Multivitamin Plus is a wonderful, complete vitamin, but does NOT say gluten free on my bottle. However, I thought I read somewhere on his website that it is gluten free, it just doesn't have the official label yet, but I am not sure. I am having a lot of frustration with supplements too. At first, I read a book that said the preservative magnesium stearate is bad for you, and it seems to be in every supplement. That's why I went to the Mercola brand, he doesn't use magnesium stearate. Also his Digestive Enzymes list only gelatin, cellulose and silica as ingredients besides the enzymes, but the bottle doesn't say gluten free so I don't know. I am taking all these though and they seem to be helping. I have a bottle of Nature's Way multivitamin, and it says that it contains no "wheat grain" but does not say no gluten. Also, it does contain wheat grass but I have read that the grass is not the part with gluten. So is there cross contamination there? I don't know. I just bought a Rainbow Light brand calcium supplement. It says it contains no gluten, but it does have magnesium stearate. I am so completely lost with the supplements, and so frustrated. I can't keep much of anything on my stomach and I just got my bone scan results, not good. I gotta do something. Oh.... here is something to investigate.... http://lifelinefoods.com/pdaily.htm Again, I can't find on that page where it says gluten free, but one of their other ones does. That liquid, if gluten free, might be the best choice, it may be easier to absorb and not have the preservatives.
  8. I don't know if OP is still reading this thread. There are a lot of good responses. You are correct, if you go gluten free with him, and you marry, things will be a lot easier. But he has an emotional issue with this and I think it has something to do with boundaries. If you go gluten free "for him", this is not a position he can trust. He wants you to be you. If you make this major life change he needs to know it is real and will be permanent. The only way that will happen is if you want to be gluten free for your own selfish reasons. (EDIT: this sounded bad when I reread it, I don't mean bad selfish, I mean good selfish, as in reasons that are genuinely for your own benefit, not his.) As far as I am concerned, your potential future children are selfish reasons enough. I am not of the belief that it's okay to eat gluten "until" you get Celiac Disease. From my own life, I suspect gluten has been making me sick since I was a small child, but very insidiously. Not necessarily ways that will be caught in your child. It made my own children sick in ways that were never caught as Celiac or gluten related but in retrospect, clearly were. Man was not really meant to eat grains, and you could do worse than having a low-grain, gluten free lifestyle to give your children the best nutritional start. Do some researching on these matters and come to this conclusion on your own, completely aside from him. Disconnect your gluten free diet from him. Make it so even if you broke up, you will remain gluten free for the sake of your future children whomever you have them with. And of course if you stay with him, your kids automatically have a good chance of getting his celiac gene. YES, it certainly does benefit someone with that genetic tendency to be gluten free from birth! If you eating gluten free along with him makes him feel "weak", he needs to get over that. He feels he is rare and sick but he needs to learn up a little on gluten and the human race. He is only the tip of the iceberg. All the obesity around him in young people, the early onset diabetes, it's all connected to wheat and carbs. It makes him feel like you are treating him like a "sick" person, and catering to him, when he does not want to be treated that way. I can understand that. You need to quit doing it "for him" altogether. And he needs to quit viewing himself as sick or inferior as a man. He is actually quite normal. It is the last 10,000 years of us eating grains that is abnormal.
  9. Husband - Grrrrrrr

    He probably thinks he has been heroically good and it's like the movie when the air traffic controller says, "Millions of safe flights and nobody says a thing but one little plane crash and they're all over you about it." People don't get the 100% OCD requirement. And that Celiac Disease is a FAMILY disease. If you have the genetic tendency, then you could at any time come down with frank digestive symptoms, but more insidiously, decades of untypical damage. Destroyed thyroid, TYPE 1 DIABETES for the love of God. That alone is reason enough to take no chances and keep your kids completely gluten free. Maybe that will get his attention. Silent Celiac disease can cause a child's pancreas to quit, dead in its tracks, we're talking giving insulin shots to a 5 year old, pricking his finger several times a day. I've seen a family go through this. You do not want to go there. Thyroid failure, bone fractures, intestinal cancer, all of it linked to Celiac. It's not about tummy aches and the trots. You are saving your children from hellish results. The negative blood test is completely meaningless. It is one point in time. A snapshot. All it means is the person might not have active villi destruction at this point in time. I don't know, maybe summarize this in a 30 second statement and give it to him, with apologies for not appreciating the extent to which he already complies, then let him stew in it awhile. To be clear, I'm not saying you don't appreciate what he already does, I'm saying if you say that to him, at the same time you give him the nasty facts, it'll be like a conduit to open his brain to hearing you. At least my husband seems to respond to that. He needs to hear the actual words, "I notice what you do and appreciate it." After that he seems open to listening to new information and my point of view, for about 30 seconds. LOL.
  10. Do you have a separate toaster? Are you SURE nobody sneakily uses it? How about microwave, wooden spoons? Pots that have small pits or scratches, that even washed could hide gluten? Separate cabinets? Have you considered airborne particles? Crumbs dropping in your silverware drawer? Cosmetics, shampoos, lotions, hair dye, etc? I agree about the antibiotics also, it may have messed up your gut bacteria. I also agree cuts taking a long time to heal is not normal. Also the tingling and other symptoms you mention could be signs of certain nutrient deficiencies that may be continuing to affect you even if your villi are healing. But I worry that you still have diarrhea once a week. It is not really normal at all, unless you can account for it by eating a ton of watermelon at once or something.
  11. I home schooled my youngest the last 2 1/2 years of high school. We pulled her out of school in the middle of 10th grade. Best decision we ever made.
  12. YES and YES. You have neurological symptoms, fatigue and digestive symptoms, Celiac Disease is definitely in the differential diagnosis. I recommend finding a good gastro intestinal doctor as soon as possible.
  13. Welcome! I think you nailed it. You probably understand how the healthcare system works with diagnosis codes. Insurance reimbursements, disability claims, decisions about risk vs benefit for treatments and drugs, etc. They want black and white, nothing vague. Everything needs to be scientific and if it is not, they fake it as best they can, so they can declare something on paper. Fibromyalgia is the classic example. We know you are sick with something, but we cannot identify a virus or bacteria that is the definite cause so we come up with a list of things to help us decide whether or not you fall into this definition. ("Diagnostic criteria"). Most chronic or autoimmune diseases have this sort of diagnostic criteria. If you meet x number out of y things, you are officially diagnosed. You've probably read about the intestinal biopsy being the "gold standard" for diagnosing Celiac Disease. There are two other ways. One way is positive Dermatitis Herpetiformis. The other is to meet 3 of 4 criteria, being positive blood tests, positive biopsy for certain changes but might not be the complete classic flattening, positive response to a gluten-free diet and having HLA-DQ2 or DQ8 genes. (As far as I know, I'm not a doctor and I don't know if all doctors use this new diagnostic method, it is more updated than requiring the completely flattened villi.) Right now you feel the solution of being gluten free is working, so why get a definite diagnosis? One thing I worry about is unplanned hospital stays, and even worse, old age care. Right now the Meals on Wheels program my mother uses does not even have a gluten free option. Institutional food for the elderly seems to be suffering budget cuts. Gluten free eating can be expensive, so later in your life if you are dependent on a facility of some kind to feed you, you might need doctor's orders to qualify for the gluten-free diet. To answer your question, no you can not be diagnosed (at least in the official sense) on symptoms alone. That meets only 1 of the 4 criteria. (Your symptoms went away when you went off gluten.) If you are already eating gluten free, you may not be able to get a positive on either the blood test or the biopsy. The doctor is right, the blood tests are not reliable, and there are many different ones, some more sensitive, some more specific, but in general, the celiac tests are very specific, meaning if it is positive, it is reliable, if it is negative, it could be a false negative. Yes, I too feel the need to have something concrete. You may not realize why you want it, but subconsciously maybe you've already wondered what would happen if you were to be hospitalized for an accident for example, and lost control of your food. YES, you want something in your "chart". But it does not have to be confirmed Celiac. Talk to your doctor about what she is putting in your record. It should be something like "gluten sensitivity" either celiac or non-celiac. At this point they have not proven you one way or the other. But talk to your doctor about making sure whatever concrete diagnostic code she is using will get you qualified for gluten free food. This may vary depending on where you live. I don't know if there are places and people who take "Celiac" more seriously than "Gluten Sensitivity", but they shouldn't. The non-celiac version can make you just as sick. The firm diagnosis for Celiac would mean you have completely flattened villi of the small intestine. Even if you do not have that, you may in the future. Your sensitivity may be a precursor to the intestinal damage. If you want more answers without the risk of an endoscopy, you can get the gene test, but if positive will still only give you 2 out of 4. But the important thing is what your doctor puts in your record to ensure that any future doctor, or the insurance companies, or institutions, will comply with your gluten free diet. AND if you are like me, will give you something authoritative to tell your family, if you think any of them might have gluten issues but you have trouble getting them to believe your "theories". I am in the same position as you are. I do not want a biopsy because I have had horrible reactions to most procedures and surgeries. It is not worth the risk for me at this point. But I am very aware that the longer I go the less chance I have of getting a positive biopsy if I don't go for it - I cannot consider doing a gluten challenge, I think it would kill me. This is a decision point many if not most of us have had to go through - ideally we would have had blood testing and biopsy BEFORE going gluten free, but for many of us, we figured out for ourselves what was going on and tried the gluten free diet just to see, and were blown away by the results. It will be nice when the doctors get on board and start thinking of celiac before the patient does, and order the testing before we get the idea. That is how it is supposed to work with doctors, right? You go to them with a problem and they come up with a few possible answers and test them out. Right now I think everyone with a "fibromyalgia" diagnosis should be tested for Celiac. Neurological manifestations of gluten sensitivity are very common and fibromyalgia is more and more understood as a CNS/nerve fiber disorder. EDIT: Good links, posters, you got them in while I was writing my tome.
  14. Like you I was sick for years. The doctors seem so clueless. I think you should talk to the GI doctor with an open mind and if he thinks you should do the endoscopy, go for it. If you get a positive diagnosis it will probably lead to you putting all the pieces together and understanding all your health problems. But it does take time. There is so much information to absorb and you have to go find it yourself, it seems like for some reason doctors just have very little awareness of how to handle this. They will give you the diagnosis and say go gluten free, but you will be on your own to figure out your nutrient deficiencies and how to correct them and how to find gluten-free food and so on. But the info is there. This is probably the best general website, you have come to the right place! There is a book called something like "Celiac the first year" written by Jules something my memory is so bad today and I'm in too much a hurry to look it up. She gives a month by month plan to absorb all this. Some things are not applicable to me like she tells you how to handle hosting dinner parties, HA HA HA, I haven't had a "dinner party" in 35 years. But anyway, if nothing else the book helps calm you down and slow you down so you can take things one step at a time. Everything you are feeling is normal. It will take time, the people in your life will slowly come around. They too are totally clueless but as you gain knowledge and confidence they will learn to appreciate your new eating restrictions, hopefully. Best of luck and welcome!
  15. Diagnosis Final Now

    Well, I WAS going to recommend "Buried Treasure" liquid vitamin C but I cannot confirm that it is certified gluten free. I used that a few months ago and I loved it. It tastes like orange juice (you just mix a spoonful into water) but without all the sugar, and it did not upset my stomach like whole fruit does. Right now I need to get a lot of good vitamins and I want to order more but their website is hard for me to understand for some reason. Another thing I liked about the liquid C was that it was complexed, not just ascorbic acid like a lot of C products.