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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 FREE Celiac.com 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 Celiac.com Store.

ironictruth

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  1. Whatever you do, run to the store now and eat donuts and bagels. Because I think when your endoscopy is done and over with you're not going to see them again. There are a lot of really good gluten-free cookies, cupcakes, brownies, etc. Donuts and bagels... not so much. Hope you feel better soon after you get some answers!
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5292331/
  3. My sibling is biopsy positive but antibody negative. Was the genetic test run? I was fine with one scope and sick to my stomach after the other due to the meds. Easy cure the next time around was to give anti nausea meds. Other then that, it was a breeze.
  4. You mentioned the fatty liver, so my mind went there right away. Try your local celiac group for docs. Or, https://celiac.org/blog/2017/06/dr-sheila-crowe-becomes-president-american-gastroenterological-association/
  5. DGP IGA can produce a false positive in liver disease. I was told this by not only a specialist but also if you Google liver and DGP IGA you will find a link to a publishEd study where some of the folks who were positive for that particular test were negative for the Celiac Gene. that being said, some people only test positive to that test who do have celiac disease. Celiac disease can also come with a heightened risk of elevated liver enzymes and liver trouble. So.... Now you have the three C's. Coincidence? Correlation? Causation. Get a celiac saavy GI, get an edoscopy and keep us posted!
  6. I can only guess based on what I do know. 1) allowable limit of IELs changed over the years. Depending on your pathologist and what lab you used, you would have to find out what limit they consider a normal range. 2) having said number one, in the early stages of the disease process you may only have a slight increase in IEL. 3) the way the biopsies are oriented on the slide when the pathologist reads it can have an effect on the count. 4) The disease can be patchy with its destruction. IELs are situated along different parts of the villi. I don't remember which it is for celiac, it may be the tip, it may be the base. With all of this, you may simply have patchy damage, poorly oriented samples on the slide, lab specifications for looking at and counting IEL, villi that are blunted in a small sample so that no cell increase is at the tip. There may be some other fascinating reason for this however. It sort of makes me want to look at Google University.
  7. So, I have gotten the heart arm/thing. it's still unsettling when it happens but I'm much better at dealing with it now. My brother who's a confirmEd Celiac also had it. he doesn't go to doctors very often but when he got sick he ended up going to two cardiologist because he really truly thought there was something wrong with his heart. it turns out it was a vagal response from the irritation in the gut.
  8. I am so sorry for what you are going through. I was falsely diagnosed with Hashi's and my antibodies were normal! I wish I could help by saying my story is like yours, which it is, but not in the ways you are looking. It is true, TTG can be elevated in other disorders including problems with the liver. you seem to sort of fit into the Latent or potential Celiac category. I too sought out a second opinion and it was sort of a waste of time. I Ended up going to a Celiac specialist. I still don't have any answers one hundred percent, but at least I know things can be accurately looked at in terms of whether or not my issues are related to gluten since I have a specialist. So I really hope your new doctor is well versed. I only have a marsh one score or an increase in a certain cell in the intestine, I don't have any Villi blunting that was found. The way my specialist described it though you can be sick for a few weeks to a couple of months just from an exposure. You will see a lot of people on the boards here discussing that it can take months if not a year or longer to feel better. I always assumed it was because of the damage to the villi I but I think there are other factors involved as well. Unfortunately I am only a couple of weeks into a gluten-free diet and when I was previously on a gluten-free diet for three months I toO still did not feel well. So I totally understand where you're coming from. You will see time and time again on this board the people tell you to be patient ,wait avoid exposure, avoid processed foods, and that it takes time. My brother is a confirmed Celiac and I can tell you he had some of the weird symptoms that you describe issues with his heart, eyes, we both get a pressure squeezing feeling in our brains. I do not know where you live or what your insurance situation is like but I was able to go to a center for excellence to get both A celiac specialist and an endocrinologist to rule out the Hashimoto's. if you ever have a chance to read the book Jennifer's Way by Jennifer Esposito, she's an actress, she dealt with a similar situation. lots of diagnoses, lots of suggestions for psych meds. Took a long time to get a diagnosis. You may not have Celiac, but keep plugging away, you know your body. I wish I had better advice for you, then maybe I'd have some good advice for myself! Best of lucK, wishes for good health, and keep us posted.
  9. The blood test could very likely still be positive. but you need to have it done very soon. Call and ask for it. TTG, DGP, EMA, overall IGA. My doc told me to go gluten free and forgot to run the blood work for a month. If you call and ask for it Get it drawn as soon as possible and then you should be able to talk about it at your appointment. Good luck.
  10. Hello, The test you test positive for can be positive in folks with celiac (as cycling lady) and it can also often produce false positives ( very new research this year suggesting it's not as accurate as we once thought). That being said, some docs might dismiss the elevated DGP IGA if TTG is not positive. To me that kind of begs the question, why did they run a celiac panel in the first place? So, hopefully the GI is willing to sit down and talk with you about what your options are including scheduling an endoscopy. Depending on what your symptoms are, regardless of whether or not he feels the testing shows you have Celiac, you may still need a scope anyway. Ask the doctor how many biopsies he takes to check for celiac. They really should take 4 to 8. if he or she says one or two I would be concerned you have a GI doctor who does not have enough knowledge about celiac disease. You will find by looking around on the message boards here that this disease can often be difficult to diagnose and you definitely want to have a doctor who Is not going to mess it up. Good luck and keep us posted! Hopefully whatever is causing you to have this testing done will be figured out soon and you can be on your way to healthy and happy. Oh and you absolutely must continue to eat gluten during all the testing. As others will tell you, go ahead and enjoy whatever cakes, cookies, and breads you like as much as you can now. You can always take the five pounds off later!
  11. The way I have had it explained, coupled with reading, is that once the intestinal cells (IELs) start infiltrating in response to gluten, they prompt a release of cytokines and interleukin response which can cause an inflammatory response anywhere in the body. Celiac, potential celiac, ncgs, bacterial infection, HIV, graft vs host disease, whatever the cause, once the cells activate, weird stuff happens. My theory is that it is an attack on the enteroendocrine and nueroendocrine cells which are in multiple spots in the body and play roles in everything from mood regulation and vagal responses to release of histamines to support gastric acid production. If villi are attacked in some cases, they not the intended target. Either way. Keep reading/searching. Jmg is right. The science is still progressing. But if you feel better off of the stuff then at least you have your answer. I am in your boat as well but am not feeling better so the need to include/exclude a diagnosis is that much more important to me. Is it a processed food I ate? Was a former 2 month no eating out trial not enough time? Good luck and best wishes!
  12. I Know! we are very lucky to have them.
  13. They do label some of their plain non seasoned organic meat though which is what kind of confused me.
  14. Woo hoo! You are awesome. Thanks!
  15. Does anyone know why some Wegmans meat says gluten-free and other meat does not? I hate to be overthinking this but it seems that the organic steak will have the gluten-free Logo on it but the regular steak will not. Yet in my boyfriend's fridge right now there is a non-organic peppercorn pork loin that says gluten free and a non organic package of turkey breast tenderloins that doesn't say gluten free. He asked me this morning if we could cook the turkey for dinner and I honestly have no idea. The only ingredient listed on the back is turkey. It does say on the front that it contains less than 5% retained water. Just seems odd to me that the turkey Would not have the Wegmans gluten-free logo but the peppercorn marinated pork tenderloin Does. Anyone have any experience with this?