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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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About ironictruth

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  1. You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance. Oh good luck to you!
  2. Run to the nearest celiac disease specialty center if you can. Especially with conflicting doc opinions. Where do you live? Honestly, I test positive to only the DGP and the newest research on its specificity is a mixed bag. My recent scope did not show "active" celiac disease but only a slight increase in IELs. I am waiting for my post biopsy appointment with the Celiac specialist next month. But I've been through a couple of GI'S locally and honestly I feel it was definitely worth going to a specialist. Especially when you have some positive blood work but a normal biopsy the doctors really go back and Forth on diagnosis and never really know for certain. Unfortunately given the above I just said I probably still do not know for certain. Sigh. But I trust the specialist to be at the top of his game on the research and at least I can feel confident and comfortable in what his opinion may be next month.
  3. Thank you! An interesting read.
  4. I said I would keep some folks updated who were curious about my positive DGP combined IGA/IGG assay which has mostly been negative when separated in to IGA and IGG tests (except 2 extremely weak IGA's). I did 14 weeks of eating gluten and they retested the TTG and DGP (combined). TTG was again negative and DGP was pretty much exactly where it was 8 months ago. EMA was not done for some reason. The serology was done locally. The Boston folks said they would not do serology when I was there but await the biopsy. The endoscopy which was done in Boston (6 samples taken) came back showing no villi blunting but an increase in intraepithelial lymphocytes. Not suggestive of active celiac disease but from what I read, lands on the Marsh 1 score. Slight increase in IEL's can be caused by NSAIDS, SIBO, H. Pylori, and others. Now, first, I do not use a lot of NSAIDs but admittedly used them about a month ago for 7 days (1 in the morning and 1 in the evening) after a fall and some bruised ribs. Second, locally, they poorly ruled out SIBO. Even though the test was negative, the folks in Boston questioned the method used as not being the best. Last, H. Pylori was ruled out at least in the samples taken from the small intestine in August. Going back to August, there was no mention of IEL's on that biopsy but duodenitis (I assume, this would include an increase of IELs as well but hey, I am no doc or pathologist). Anyway, resuming gluten did not seem to make me any sicker then I was before. Though admittedly, none of these symptoms started until my FIRST gluten eating for 6 weeks back in the fall/winter of 2015 so I am not sure I ever really felt better since then. I continue to get pressure and pain in upper right rib cage and feeling like my brain is being squeezed at times. Kind of makes you wish we had easy access to TTG 6. During the hiatus of trying to get a diagnosis I was given one of Hashimoto's 6 months ago by a local endo. Suspicious of a conversation I had with him, I set out trying to get another local endo which literally proved to take the last 6 months and counting with poor coordination of medical are, lost records, etc. So, while I was out of town getting the scope done in Boston, and enjoying all of the food the city has to offer, I tried to see if I could get in to an endo THERE to rule out Hashi's. I did. And he did...in under 4 hours. It was sort of comic relief in a way I guess. I know people jump on the DGP thing, that it is an extremely accurate test, but I have already shared a study here showing potential low predictive value and have been informed of such by two celiac clinics in the United States. Not that it is a useless test by any means, but not heavily relied on by the celiac specialist community. The irony, is of course we thought we would wait for the biopsy and the pathology report literally says no evidence of active celiac, the presence of IELs is non-specific, and basically the findings should be correlated with serology. LOL!!! SO, either I have the very start of celiac disease with atypical symptoms OR I have a false positive DGP as many had in the recent Columbia University study, and some other disease process. Landing me in pretty much the same boat I was before I resumed eating gluten at the end of December. Only now I am 3 pounds heavier (hey, pasta and chocolate cake were all over Boston). I have yet to have my follow up appointment scheduled to discuss the results with the specialist. I will keep everyone posted. I also agreed to participate in a study where they took some blood and 4 additional biopsies. My doc is the one who is doing the study but I am not sure he will or can use those samples to take an additional look. Anyway, I am frustrated and scared still that something else is going on but much calmer then I was months ago. But I now know how to have a scope done without vomiting as they did a great job listening to my concerns in Boston. They used only 1 med instead of 2 (had the 2nd on back up if needed )as well as pushed the anti-nausea meds prior to the scope. And they informed me of a couple of possible tests I could have done locally which was was a LMAO moment for me because one of them is a really easy test that is done often. Coincidentally, my local GI doc thinks I am nuts but ordered some 2 day scan for me with radioactivity to rule out a tumor practically no one ever gets. Nice of him to think of me, but a simple "lets see how your stomach is emptying" apparently was not a thought process there. Anyway, I had a mini vacation out of it.
  5. How are your bathroom habits? Giving up gluten can equate to a fiber loss. And celiac can slow transit time. You may literally be full. I was going everyday but had 2 scans months apart. Both times docs informed me the colon was full. I was shocked. You do not want too eat too much fiber either though because it can also cause issues with constipation. Make sure you are getting enough fiber and water. Try a small laxative if needed but not all of the time. See if after that your weight goes down along with the tummy.
  6. Yeah, this is pretty much what happened to me. My first scope on gluten for 6 weeks was totally fine. My 2nd scope off of gluten several months later showed duodenitis ( no villi blunting) and the same test you test positive for which above, I explained the current research on. Again, except for two very weak positives on the separated DGP IGA tests, I tested negative to the separated tests within days of testing positive to what you tested positive for, the DGP screen. I continued to feel poorly on a gluten free diet but admit I was still eating out and was not careful until 5 months on the diet, right after the duodenitis was found. Now I am back on gluten because I want it ruled out/in by a celiac specialist. I had 2 docs say probable celiac and a few said no. It is confusing! It might be worth getting the gene test, asking for the separated DGP assays (perhaps a different lab in town) and see how they test. Do you know how many biopsies were taken? Any from the duodenal bulb? See if you can get a copy of the pathology report. Do you have celiac in the family? Would you be willing to eat it for awhile longer and see a celiac specialist to rule it out? Have you had gastritis before? A gluten free diet might be worth a shot. And people on the boards here will remind you that it takes time on the diet to feel better. BUT, there is a difference between time for healing a destroyed gut and time passing not feeling well with the wrong diagnosis. We should keep in touch as our stories/results are very similar and I am working with a clinic in Boston. I am still waiting to hear if I will be going for another endoscopy based on the latest DGP screen.
  7. Huh? Yes, you need to be on gluten for the scope. Not even sure why they would say that to you. What blood tests were positive?
  8. That sounds like a good plan then. You do not want to feel any worse during your internship. Enjoy your time and feel better soon!
  9. You might want to stay on gluten for the scope. 3 months off is awhile. I doubt you would fully heal or anything during that time. But you may start to heal. Especially if you already feel like you're in limbo. Some folks are fine with positive blood work and committing to the diet but if you feel like you're in limbo you probably want the scope. And it's a good idea to stay on gluten. Although some celiac centers suggests two to three weeks of eating gluten before the scope, there's a number of studies that also suggests it could take more than 3 to 4 months to cAuse mucosal relapse. it probably would be better not to chance it if you plan on getting the scope. Try to eat it everyday, even if just a little. Oats should not impact the numbers. They just can be hard on the sensitive tummy. There is always a possibility of false positives. There is a constant learning curve In Medicine. Probably you will come back positive on the biopsy For celiac. But you never know, you could end up a case Study. There are plenty of thyroid receptor cells in the gut. Since you need to be on gluten for the biopsy, and it sounds like You probably will be gluten-free for life, you are overseas... I would enjoy the food where you! Good luck!
  10. Thank you!
  11. For those with nausea, how quickly after exposure? 10 minutes? 4 hours? 1 day? And how long does it last? Minutes? Hours? All day? I have been getting nausea on and off since the summer. Was gluten free then but a lunch of raw veggies could Put me into queasy stage. All I had back then was duodenitis, and if I had to guess gastritis, I have no idea why they didn't biopsy for that when they were in there but they didn't. I am on gluten again now and eat an english muffin often in the am. throughout the day I just have my usual weird symptoms some pain in the upper right quadrant, head pressure maybe some mild nausea but nothing too extreme. Saturday I went nuts And ate pretty much every sample at Costco early in the day, we had cupcakes In afternoon, and then went to dinner where there was bread and ravioli and croutons. I felt some mild nausea after walking around Costco and then pretty drunk and sleepy after the cupcake (Sugar, lol) and fine after dinner. But I had a couple glasses of wine at dinner so I would've noticed much. It was not too bad in the morning but by the afternoon naUsea was kicking in so I tried to ease my stomach with a giant soft pretzel. lol. I was in agony after dinner, so so so nauseous I had to end up taking some Pepto and melatonin to fall asleep through it. this morning I ate a bowl of Cracklin Oat Bran and maybe Within 7 minutes I was feeling queasy but it didn't last for that long. it seemed awfully quick to be in the small intestine so I thought perhaps stomach. I am under a lot of stress now for various reasons so I thought perhaps maybe between the wine and the sugar On Saturday and the stress I just have another case of gastritis. so does anybody get really sporadic timing? Anything within minutes?
  12. Do you know how many samples were taken to biopsy during the endoscopy?
  13. I do not have a diagnosis. But I do know that I had an EUS in late July to rule out duct issues and an endoscopy in late August and both doctors said visually everything was fine. In fact, one of them (was referred to him for the procedure only) sternly said, "there is nothing wrong with your duodenum!" But never asked me a single question about symptoms nor did he introduce himself. Nausea was one of the main symptoms at the time. The pathology report read "marked focal duodenitis", which is basically inflammation without villi blunting. My GI commented on the language the pathologist used. So yup. They can miss a lot visually during the scope.
  14. Good lord! A new baby after a high risk pregnancy and now this! I hope you are getting plenty of rest and some down time for yourself.
  15. They may not have run those tests. They are liver enzymes, I'm just wondering if you happen to know if they were done fairly recently. If not, it may be good to inquire. Keep us posted!