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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 Justscared

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  1.   Panel came back negative (results below). I guess I am now going to take the gluten out for the truly gold standard. It is amazing how many people without Celiac swear they feel so much better when completely off gluten. This has been quite the roller coaster - thank you so much everyone for your support. I did learn a lot - now if only I could figure out how to bake some really nice gluten-free cakes.      Component Results Component Standard Range Your Value Gliadin IgA Ab 0 - 19 units 2 Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 GLIADIN IGG AB 0 - 19 units 2 Negative 0 - 19 Weak Positive 20 - 30 Moderate to Strong Positive >30 Tissue Transglutminase Ab,IgA 0 - 3 U/mL <2 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstr- ated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Tissue Transglutaminase Ab,IgG 0 - 5 U/mL <2 Negative 0 - 5 Weak Positive 6 - 9 Positive >9 Endomysial IgA, Ab Negative Negative IgA 91 - 414 mg/dL 194    
  2. Thanks everyone again. Just wanted to write an update -  my GP ordered the panel, so I had blood drawn this morning after eating cake and other gluetened things all week-end. Now I will just be waiting may take up to 2 weeks, but they said probably not that long.   Keep praying my GI was right - as he did not even want to do the blood panels.      
  3.   I meant "CELIACS-CELIACS". :-) As in not just "gluten sensitive". Those with flattened villi on the biopsy, positive blood tests, etc.
  4. I have already contacted my GP via the health records system they have online but I will also call her to request the blood panel over the phone. Their office was closed today because of snow and bad driving conditions. So I will try to get those blood tests anyway, for peace of mind. This process seems so frustrating that I think a genetic test that could confirm the lack of a gene would be amazing, because that one really should be beyond the shadow of a doubt. I just don't think how I could get genetic testing ordered. A this point, it would be worth it, speaking of peace of mind. There seems to be too much uncertainty involved for a condition that requires Nazi-like avoidance of a substance that is pretty much everywhere. As I assume most Celiacs or NCGS cannot guarantee the complete avoidance of even microscopic traces of gluten for the rest of their days, I wonder what happens to them when they do get contaminated. Getting some symptoms back and feeling sick for the moment is one thing; having inflammation and damage triggered in the body again and further increasing the odds of terrible diseases like lymphoma - is another. It is still not clear to me what is the level of gravity of the situation when a celiac who is generally on a gluten-free diet gets contaminated accidentally. What about for a NCGS ?
  5.   In that case, what would be the role of the blood tests? If they come out negative, I would still have to do the 6 months gluten-free trial, if I understand correctly.   Then why have them at all? Shouldn't I just go ahead with the gluten-free diet?   Let's just also take the scenario where someone has negative blood tests and negative biopsy but embarks on a gluten-free diet for 6 months anyway. During this time, they would likely eat better than before because they would eat more whole foods, less processed foods, etc. Generally, when people embark on a health-related diet of any sort they start eating better most of the times.   As a result of these changes, the person in question decides that she feels much better after the 6 months of dietary changes. As such, she concludes she MUST have gluten sensitivity even though there is no direct proof that it was the elimination of gluten that did it. It could have been that the overall better diet contributed to an overall better health and energy level - yet the person in question would never know, and she would decide that she would have to avoid gluten for the rest of her days.   This would not necessarily be a tragedy, but I CAN see how it can be a major dent in quality of life for those people who believe they have "it" when in reality they don't - especially if it is believed that gluten-sensitive people don't just have to "avoid" gluten as much as possible, but to be as religious in eliminating it as the Celiacs themselves (as in "not even cross-contamination allowed).   I have only done a total of 4 days of gluten-free so far (2 days a few weeks ago and 2 days this week) and I can already see how the constant fear of cross-contamination or even the smallest amounts sneaking in one's food - can affect someone's life terribly. This constant fear is quite un-necessary if the disease is not there .     Does anyone know what happens to NCGS people who only "avoid" gluten as often as possible as opposed to "eliminating it religiously"? Are even very small quantities harmful as in the case of full-blown Celiacs?   Thank you for any nuanced info!
  6. I asked my GI and he said it was extremely little what he thought he saw during the endoscopy, so he biopsied it to make sure. The biopsy came back fine so for him the case is closed.    If the blood panels also come back fine, can I conclude without the shadow of a doubt that I do not have either Celiac or NC-gluten sensitivity?   I will ask my GP about the blood tests.    
  7. I thought about it some more. Here are my worries now: The GP might not take me seriously, especially after the GI sent her the biopsy lab report where it clearly says "no evidence of Celiac Sprue". The insurance company will surely not want to pay for this blood panel after a Celiac dx was excluded with a biopsy. What kind of reason should I give for setting up this next appt with my GP ? Or should I ask for the blood panel over the phone and if she says ok, just go in to have the blood drawn? I am not even sure how to approach this. I can also tell her I am willing to pay for the tests myself. I wonder how much should I expect if my insurance company nays it?
  8. Oh, gosh...duh! Thank you for reminding me. I guess I will just call my GP and ask her to do the panel. I hope she won't refuse. I was wondering if the 2 days of gluten-free I just had coupled with 2 more days I had two weeks ago could affect the results. Tomorrow I'll eat gluten again, not that I need much encouragement for that, as this is definitely something I can do in spades. I just wish this mess was over. My GI is very convinced I am 100% fine, so if he said " no need for blood panel", how should I put it to my GP? I am glad to pay for the tests myself. Now if I make an apt with her, what should I say I want it for?
  9. I am thinking about asking my GP when I have the yearly physical in a few months. For now, I will stay gluten-free.
  10.   Thanks so much, everyone - this really helps. I will check both TJ and Costco for the pre-made options.   As for making my own, what kind of flowers should I buy and from where? I know it is usually a mixture of corn, rice, potatoe and taopica flower with some xanthan gum in it. Am I correct?   Where could I buy all these separate flowers at decent prices - so I can make my own recipe?   I remember trying to make some French crepes with buckwheat a while ago. They were so bad I never tried them again and kept that buckwheat flower in the cabinet for years until I tossed it in the garbage.   My goal is to put something together that would get as close to wheat as humanly possible. I am a general carb addict and I love fresh bread out of the oven more than any food item on Earth. When I go to those Indian restaurants where they come with that crunchy thin bread with sesame on it, I literally go insane with pleasure eating that thing. To me, this must feel like what heavy drugs feel for some (I said "must" because I never tried any kind of drugs :-)).   Today I made my children some egg noodles with carraway seed and cheese and I thought I was going to faint from craving it.   For me, giving up gluten means giving up the best tasting foods in the world. I keep hoping that at the end of my 2 months gluten-free period, I will still have my symptoms so that I can at least conclude it has nothing to do with gluten. :-(   At the same time, I hear so many wide-eyed non-Celiacs going on and on about how amazing they felt once they gave up gluten - that I feel compelled to try and face the truth.   Thank you again!
  11. I would appreciate any tip for a really fine gluten-free flour that tastes and performs as close to wheat flower as possible.   I am trying to rule out a possible gluten sensitivity by embarking on a 2 months gluten-free journey. MY GI recently ruled our Celiac with 1 biopsy of the small intestine he took during an endoscopy I had done for acid reflux.   He said a blood panel is unnecessary and that I do not have Celiac. Given some persistent symptoms I have had over the years and for which I had various tests that came out fine, including muscle/bone pain all over the back, occasionally flairing cheilitis, chronic rhinitis, etc - I am still not ready to think my relationship with gluten is 100% fine.    So I thought I would check it myself with a completely gluten-free period. Trouble is I am discovering I was using flour for quite a few things in cooking, including French crepes, thickening of sauces, etc.    Yesterday I made some beef stew using some fine corn meal instead of flower (that's what I happened to have in the house) and it kinda sucked.   Do you know anything about this supposedly awesome gluten-free flour?   Any other recs that perhaps wold not break the bank?   Thank you so much,
  12. Yes, this is what I plan on doing. Today was my first day completely gluten free. I did ask the dr. Whether I should get some blood tests anyway and he said no. So I will just have to try it with the elimination diet. After all, I still have some symptoms I've had for years, including muscle / bone pain all over my back, occasionally flairing cheilitis at the corners of the mouth, chronic rhinitis, anxiety, low moods, sometimes foggy brain, etc. The latter, of course, could simply be good ol stress, as I am joggling a professional career, 2 kids and their increasingly demanding school needs, all while cooking from scratch daily, etc. Oh, well - I'm just grateful for the good test results so far. The gluten free journey will be interesting.
  13. UPDATE, BACK FROM GI.   Biopsy results indicate no celiac sprue or infectious microorganisms. Just grade A esophagitis in the lower part of the esophagus from a little reflux.   Apparently though, the # of biopsies the dr. took of the small intestine was only 1. He also took 2 other biopsies of the middle lower esophagus - I got a copy of the lab report.   I asked the dr why he wrote "atrophic duodenum" in the endo report (the reason why I've been freaking out for almost a week now) and he said that it was a very small portion that seemed a little different to him and he just wanted it biopsied; but the final call is the biopsy itself and according to him, that came 100% normal, with no villi flattening.   I asked him whether I should still do a Celiac blood panel and he said no.     What would you advise me now?   I want to take myself completely off gluten anyway for 30 days and see what happens.   Will the reflux go away? Will the muscle/bone pain all over my back disappear? Will  the occasional flair-ups of cheilitis (little sores at the corner of the mouth) vanish altogether?  Will I see other health benefits?   Who knows? Many people NOT diagnosed with Celiac claim miraculous changes in health after they get themselves off gluten.   I still sometimes worry that I could just be gluten-sensitive but without blood panels I cannot know for sure. Maybe my GP will want to do a gluten-sensitivity panel when I have the yearly check-up.   I guess the take-home lesson for pre-diagnosis people would be:   Do not assume that the "atrophic duodenum" remark your GI. writes in the endo report right after the procedure = "villous atrophy".   Sometimes the dr. THINKS he sees something and the lab finds all in order.   It CAN be very nerve wrecking though.   Thank you so much again for everyone's support - I remain grateful for all the information and help I received here. I did learn a lot. I
  14. It makes sense. I just never thought that people would continue to rely on processed foods after such a diagnosis. A gl,ute-free boxed prodict may be gljuten-free but it's still a processed thing. The point is to increase your intake of whole foods cooked from scratch. You would think that this would be a wake-up call that would put people in the kitchen, constantly peeling whole vegetables and cutting pieces of fresh meats, etc (yes, very time consuming indeed - which clashes with the huge pace of life of modern society). But if you have a more serious condition, you would think cooking whole foods would get very high on the priority list.     The fact that many people just want to get their food from a box is perhaps part of the western way of living.    
  15. Endoscopy Today

      Well, basically I never understood whether "atrophic duodenum seen by dr. during endoscopy procedure"  = "villous atrophy seen by the lab under the microscope".   Yes, I will ask for clarification today, including pathology report from the lab itself, Celiac panel (regardless of results) and nutrient panel (regardless of results).   Thank you again.