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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 JoshB

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  1. Raven, I agree with you that for many of the blood tests in use, false positives are extremely rare. So rare in fact that I suspect those cases are just beginning and haven't yet developed intestinal changes. That's not the "false positive" I'm referring to, but rather anyone who decides they were "positive" when truly they were not. The consequences of having and not knowing are devastating. But there is a significant cost both socially and economically to eating gluten free. Doing this unnecessarily (or even necessarily) will strain your relationships and finances for the rest of your life. Irish, I have little doubt at this point that you will decide to "take offense" with anyone who does not agree with your line of thinking. Now, first, chill out. Second, go back and read the thread again. I was here giving honest --and I think good-- advice to someone who asked for it. You're the one picking a fight. You "took offense" and "exception" before you were even involved in the thread, and now you're trying to attack my arguments by attacking my character, making it look like I've set out to antagonize you. If you would like to change my mind, or even just post an alternative viewpoint for discussion, then please make a well reasoned argument backed by dependable evidence. Anecdotal evidence is your uncle telling you how dangerous the ocean is because he was bit by a shark when he was ten. Scientific evidence says that it's not very dangerous because only one out of every twelve million beach-goers gets bitten. One of these forms of evidence is considerably more valuable than the other.
  2. The manufacturer of the test kit seems to think that the specificity is above 98%. Usually "A" type antibodies seem to be higher, so that's a little odd. Did they do a "Total IgA" test as well? http://www.inovadx.com/PDF/nccls/704520_nccls_EN.pdf I would think this is a positive result. If there's any question left in your mind, then now is the time to get a biopsy.
  3. I've got a very good idea of what IGA deficiency is, Irish. It means that your "A" type antibody response is abnormal, and that the IgA-anti-TtG test will be invalid. Fortunately this is not a "false negative" as a celiac panel should always include a total IgA check, which will flag this issue. And, in any case, only about 3% of celiac disease patients have low "IgA". In a research setting, where the clinician actually knows what they are doing, and where they know there is accountability for their work, the sensitivity of ELISA IgA-TtG, TgG-TtG, and EMA are all upwards of 95%. In the "real" world the sensitivity of each of those is usually ~90% or even less depending on lab. This is part of why a celiac panel includes redundant tests. I think it would be a good idea to get retested at another lab if there was very strong reason to expect celiac disease, but negative blood work. It's very easy to think of the cost of a false negative. Remember that a false positive has a cost too. Especially for a child.
  4. I'm not sure that Entero is quackery. The ideas behind the tests do seem to make sense. You find antibodies in the stool, it seems likely that your body is pissed off at something in there. But since this is all being immediately expelled from the body, do the antibodies really matter? Is there opportunity for a feedback loop to develop like in celiac disease? Nobody knows, and it doesn't seem like we're likely to find out, because they seem more interested in getting every customer than can than they are in publishing their results and having other organizations validate their methods. As for the blood tests failing, I really think they should be quite reliable. Study after study shows how good they are. The trouble with taking anecdotal complaints against a test like this is that there's a selection bias. The only people who are going to speak up are the freak cases that the blood test didn't work for. You have a lab failure or mix-up, or just something very strange about the person taking the test and it doesn't work out. Well, those are the people you're going to hear from when you ask about the blood test. Not the 1,000 other people it worked fine for.
  5. With one DQ2.5 I think her odds are somewhere around 8% of developing it in her lifetime. That number seems to vary a bit from study to study. Genes don't appear to be enough to cause it. Usually there's some trauma: an illness or injury, or even extreme stress can kick things off. Actually, blood antibodies are generally much more sensitive and specific than biopsy. Though they don't always run anti-gliadin now, like in your Enterolabs test, because it's not specific to celiac disease. There are several other, very good tests though. You can just ask for a "Celiac Panel". I would absolutely look into it for yourself. There's a big crossover between Hashi's and Celiac. There are even a couple studies showing thyroid improvement on Gluten Free for people who do not have celiac disease. I don't think the "why" part of it is understood yet.
  6. Tracy, children usually heal in a few months. Adults, though, take anywhere from a year to "forever". Or at least that's what used to be thought; my GI tells me that they have excellent success with prednisone in those cases. This is why they'll want to do an endoscopy now, and then a followup in a year or two. You're lucky to be symptom free, but you really should be just as careful. The upset stomach is bad, but the real worry is bone loss and cancer. I was trying l-glutamine for a bit to try to speed things up. Some people swear by it, and hospitals use it to help you recover from intestinal surgery. I didn't really notice a difference, but then I'm not sure I would have even if it was working well. We really need studies in this area.
  7. She has one very risky gene [DQ2.5] for celiac disease, but it should not be taken as a diagnosis; about 13% of the population in the US has this. As for the other results... who really knows? The tests that Enterolabs has developed seem reasonable on the surface, but they have not published their work. It's not been peer reviewed or duplicated. They are the sole backers of their tests. They are banned in a number of states, and your insurance isn't going to pay for what they do. There are reasons for this.
  8. Is This Even Possible?

    Frankly I don't think it's possible, and you are likely endangering your relationship with your workmates by worrying about it. If you're concerned about crumbs on the door, then stand second in line and don't open it yourself, or wash your hands after the meeting. Maybe you should stop in and see the doc, or take a vacation day and rest up. Hard to remember it sometimes, but people do get sick without the assistance of gluten!
  9. Did you get a copy of your lab-work? That might be helpful. 40% or so of celiac cases involve no intestinal discomfort that the patient noticed. This is generally referred to as "silent celiac disease". Usually in these cases it's discovered because of the "minor" manifestations of the disease or because a family member was diagnosed. Symptoms and severity differ a whole lot from person to person.
  10. It's fine. Almost no one uses gluten or even wheat starch as a binder now, so there's nothing to cross contaminate with. Besides if any manufacturing facility is going to have good protocols against cross contamination on a processing line, it's a pharmaceutical plant.
  11. That is a good point. There's a lot of areas where the current scientific answer is "We followed for two years and this is what we saw", but the real answer is "In the long run, who knows?" For many questions we'll never have an answer, just because finding that answer would be incredibly cruel or expensive. About the only reason we know of so many risk increases is because of the Korean War study where they were able to look at frozen blood samples from forty years ago and determine who had celiac disease at the time and what happened to them over the following decades. How else would you do long term studies? You can't exactly figure out that someone has celiac disease and not tell them just so you can see how it progresses. And it's hard to pay for studies on symptom improvement.
  12. I've asked this myself. Everything I've read says that neuro issues that come from actual damage don't usually get much better. Stress and pain, however, do have a major effect on your nerves. Also, there are some common vitamin deficiencies that can do horrible things to the chemical transmitters your nerves use to send messages. Fatigue, of course, has an enormous effect on our mental sharpness. All of that should correct itself as you get better. So, I guess it depends on you and your situation.
  13. It sounds like you and your son are allergic to wheat rather than gluten intolerant. I think you could test that without eating wheat for a long time, just get an allergist to do a prick test. If your reactions are that quick and clear, I'm not really sure what a doctor or a diagnosis is going to do for you. You'll have to eat wheat for several months to test for celiac antibodies, and frankly I don't think you'll be positive. What difference does it make to you if the rash is allergic or auto-immune? Either way you're not going to want to eat wheat. I guess it would be nice to figure out if anti-histamines help you.
  14. It depends on your doc and possibly what you ask for. My GI has finally talked me into one, as some issues aren't resolving. I'm supposed to go in a few days here, and he says I've got my choice between full sedation, a little something for the pain, or nothing at all.
  15. The "IGA" you're referring to is simply an indicator that your "A" type antibodies are in working order -- the other tests can report false negatives if you're low here. It has no bearing on whether you are celiac positive. It's the other numbers on your test that actually count. If you have positive blood work, you almost certainly have celiac disease. In fact, the certainty is much greater than with the endoscopy. The endoscopy at this point may give you some indication of how bad off you are, but even a negative endoscopy should be taken to mean that they either missed your damage or that you caught things early. Studies show that a follow up endoscopy after a negative scope and positive blood work will find damage on the scope 95% of the time one year later if the patient continues on a normal diet. With that in mind, I would not keep eating gluten just to emphasize damage on the scope. Every day you are losing irreplaceable bone mass, and may be doing some of the other associated sorts of damage. Unless your scope is months away, it's very unlikely that any diet change you make now will visibly effect your results. As an adult with celiac disease, if you've progressed to level III villi changes, you have more than a year of healing ahead of you.