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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About carynanne

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  1. I must not be understanding this correctly. Is the tranglutaminase test for antibodies to gluten? And if so, how can there be any antibodies to gluten at all in the blood stream and the patient not be considered gluten sensitive? I can understand how a higher concentration of antibodies could suggest a higher sensitivity, but if there are any antibodies at all in someone's system, doesn't that suggest that their bodies are recognizing gluten as an invader?
  2. Why Now?

    Hi. To add to the website answer, in short: With autoimmune diseases (I have a thyroid one), there are 2 factors to consider: genes and the environment. You have to have the genes to carry the risk of an autoimmune disease, but something in the environment has to trigger it. The trigger for celiac is unknown. If you have it, you've carried a propensity for it your entire life, but for some unknown reason your body didn't start responding to gluten until recently. I wasn't diagnosed with Hashimoto's until I was 27. People with lupus often don't have symptoms untl they are much older than that. There are just things we don't know about what triggers autoimmune diseases -- when they figure all that out, maybe we'll have a much healthier populace. But it is very common to go your entire childhood and into adulthood with no symptoms and then suddenly develop them. I understand childbirth to be a major autoimmune trigger, but I'm sure it's not the only one!
  3. There are 2 tests online that I've found, though I haven't done either of them. I'm still waiting on my labwork (it's been over a week--??), but here are the websites for them: A saliva test to see whether you carry the genes for celiac. Apparently about 30% of the population carries them, though, so this sounds interesting, but will not tell you if you have celiac. This is called a Biocard, and it is a home blood test for antibodies to gluten which I think is like a pregnancy test in that, while a positive is a good indication that you are celiac, a negative does not mean you're not. You can read more about it on that website. If anyone else has any more input on those, please speak up! *I can't figure out how to get this test in the US -- this is a Canadian website.*
  4. The reason I change my meds periodically (which consists of taking a week off of them here and there, or taking an additional 1/2 pill a day for a week at a time occasionally) is because when my hashimoto's was diagnosed, it was diagnosed based solely on an antibody level in the 1700s with a reference range of 0-35. My TSH was 4 and my T4 was and has always been within normal limits. My labs have never, not once, been out of range. My endo insists that my TSH, for me, should be between 0.5 and 2.0; I've never found any reason why. Everything I read says that if your TSH is above 5 or 5.5, you should become suspicious of a thyroid disorder. So if I actually do have a malfunctioning thyroid, as best I can tell, my doctor has created an arbitrary system and is trying to follow it, regardless of my symptoms. I've recently begun experiencing metrorrhagia -- bleeding between periods -- and his only suggestion was "test the blood." Labs are normal. So it obviously, to him, is not my thyroid -- even though when you google "metrorrhagia causes" one of the first things you get is "too much thyroid hormone." And I've never experienced this symptom before in my life. My periods didn't start until I was almost 17, and I've only ever had them every 3 or 4 months at the most since then (I'm 30). So if he's not going to listen to me, then I'm going to experiment, rather than wait until I've caused myself uterine fibroids or a tumor from too much synthetic hormones.
  5. Your TSH was 20??? Wow! Mine was 4 both times they tested me before diagnosis. When I was diagnosed with Hashimoto's, it was my antibodies that gave it away --- they were insanely high. The TSH, I'm finding, is mostly useless in determing appropriate levels of Synthroid: I change mine based on symptoms, without permission. And since only some of my problems went away on it, I'm thinking that can't be the end. (I actually do have a known genetic link to celiac, though. My grampa died at 63 of colon-related disease, and was a diagnosed celiac.) I just get really tired of being nauseated so often. I feel like I have morning sickness without being pregnant. It comes and goes. When my blood test came back negative 3 years ago, the endocrinologist who diagnosed my thyroid actually asked me if I were still interested in doing the biopsy for celiac, and seemed willing to do it, but I thought I didn't need it. Now I think I'm going to push for it even if the PCP balks, because an actual celiac diagnosis is villous atrophy of the small intestine, and they can't know that without endoscopy! You really have to assert yourself, I've learned, if you want to be heard. I'll keep you posted! You do the same! --Caryn
  6. Wow. Your story sounds EXACTLY like mine. I'm 30, have Hashimoto's which I was diagnosed with 3 years ago, have always had irregular periods, everything blamed on thyroid, normal colonoscopy, recent rash, infertility (though I have 2 kids -- I had to try hard with drugs for them), and an initial celiac test (uncertain what tests were run exactly) that came back negative 3 years ago. While I'm waiting for an actual celiac panel result right now and don't have a diagnosis, lots of people on this site I've been reading about try the gluten-free diet even without a diagnosis. I would probably have the biopsy anyway, just because I'd want to know, but there's always that. I keep wondering, also, if maybe something else I'm eating is causing me problems, instead of gluten. But I'm waiting for the results first. But seriously, if it were me, I'd get the endo anyway. Caryn
  7. Thanks! I didn't think to look at their website (duh). If these tests come back negative, I think I'll come a little more prepared and show them where they can find them. It sounds crazy, bt I really wish I could just get a diagnosis of celiac so I can stop wondering... even tho that means that I have a "disease." At least it would explain things.
  8. Anti-gliadin (AGA) IgA Anti-gliadin (AGA) IgG I dunno. I went to a Wellstar (they're big in the Atlanta area) physician's clinic, and they use Quest. I wonder if these labs are listed in a different section of the book. Or if they needed to say "antibodies" after them. The doctor was perfectly friendly about it, but he sort of acted like he had never seen these tests before. I understand that Celiac is massively underdiagnosed-- maybe this is 1 reason why.... Thanks! I guess I'll hear back about it sometime next week. Caryn
  9. [ Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Total Serum IgA
  10. Also, does anyone recommend that MYCeliacID genetic test that is like $369?
  11. Hey, I was on here 3 years ago looking for a diagnosis, but when I went to the GI doctor they ran a million GI tests, with only 2 of the tests I know are for celiac -- the gluten antibodies one and an ANA. Gluten antibodies was negative. The ANA came back positive, so they ran several other tests for lupus, diabetes, etc., and they found out I have Hashimoto's thyroiditis. I let the ball drop on celiac, thinking we had found my problem. But now 3 years later I am having a major relapse in nausea, with constant abdominal pain, menstrual irregularities and infertility (all issues I was having before I started on Synthroid), and a new major problem with teeth! I had 8 new cavities since the last dentist visit 8 months earlier. I take impeccable care of my teeth. It's unreal. I want to go back in to be fully tested specifically for celiac, but I can't remember the tests that are recommended that would cover all the bases and ensure a pretty high probability of accurate diagnosis. It does run in my family, but 2nd degree--no diagnosed 1st degree relatives (though several suspected). Thanks! Caryn
  12. Thanks!! You people rock.
  13. Hi, I'm going to a GI doc tomorrow and I read in here somewhere recently that there is something called a "complete celiac blood panel" which can give you a very strong idea of whether or not you have celiac disease. I can't seem to find where I read it. Can anyone send me a link? I think it was 4 tests. I want to go to the doc tomorrow prepared and ready to defend myself. (I lost faith in doctors a long time ago). Thank you! Caryn
  14. I just thought I'd write in and say that I just got up out of bed at 12:30 because my stomach was growling and I couldn't sleep. I guarantee you I ate a full meal for dinner... I wonder if it's to do with malabsorption? Your body not using the calories properly because of damaged villi? Assuming we're celiac, of course. (I've already half-convinced myself I am.) Caryn
  15. I should start with: I don't know yet if I'm celiac but strongly suspect it. That said, I have at least a similar problem: I eat ALL THE TIME. I snack on anything I want, eat large amounts of fatty foods (I stay away from sugars because if I eat those, I'm STARVING half an hour later) and don't exercise (just because I've recently gotten out of the habit). I used to exercise but it never really made a difference in my weight, only my energy levels. I'm Female, 5'9" and 127#. And I cannot gain weight. Recently I've noticed that pasta makes me VERY sick the next day after I eat it. I end up with a terrible stomachache and diarrhea the next morning. So yes, I have a similar problem. And I'm getting tested hopefully next week for celiac. Caryn