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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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  1. Just wanted to post an update since it's been a couple of weeks since my endo and colonoscopy were done. The GI said he didn't find anything obvious, but he did take some biopsies (still waiting for the results). I've been gluten-free since that day 10/27/08. Most of my gi symptoms went away within the first few days. I was still having D, but it was less severe. Now 2+ weeks into it, all of my gi symptoms are gone! The only lingering problem is my energy level. I'm forcing myself to exercise in hopes that it will help me improve. I'm also still getting B12 injections monthly. They will recheck my levels next month. It's amazing what a difference going gluten-free has made! No more bloated tummy, gas, stomachaches, heartburn, it's all gone! I don't care that I don't have an "official" diagnosis. The Enterolab results and dietary response speak for themselves. I'm so happy to feel more like myself again.
  2. Thank you guys for your replies. I really needed to vent. Guess my expectation were too high after waiting that long to see someone. He was saying that I probably had some sort of infection that lead to my symptoms and changed the way my bowel is functioning. He says that he doesn't think I have celiac and that my bowels are just not working correctly for some other reason and there's nothing they can really do about that. I'm glad he reran the blood tests and that he's doing the endoscopy. But I'm really unsure about the colonoscopy. I know you don't need that for a celiac diagnosis. His rationale is that B12 is absorbed really far down in the small intestine, near the entrance to the large intestine, so he's going to see if he can see if that portion is inflamed. He said that the B12 deficiency is not a symptom of celiac, although pretty much all of the literature I've read lists it a a symptom. I really don't understand why he thinks I definitely don't have celiac!?!?!
  3. After waiting 6 weeks to get in to see a new GI, I finally had my appt yesterday. I saw another GI in June (symptoms started in April) and he just said I have IBS, take Imodium, and move on. Since then I have become lactose intolerant and B12 deficient. I had the Enterolab tests run and they were positive for gluten sensitivity (see my siggy for more info about that). So I went for my appt really excited about meeting the new GI (I found his name on the local celiac support group website). I met with the resident doctor first who was very thorough about getting my history, symptoms, etc. I showed him my Enterolab results, which he wrote down. He listened to my grumbly stomach, etc. He seemed surprised that I hadn't had an endoscopy already? Then I waited 20 mins alone in the room while he consulted with the GI. So the GI comes in and immediately says that he agrees with the first doc, that I have IBS or a "functional bowel problem" that may never resolve and I may have chronic D for the rest of my life. WTF????? I said that was not an acceptable diagnosis and I refuse to live like that. I didn't have an infection/bug when my symptoms started, it was just D and stomach aches after I ate. He also totally dismissed the Enterolab results saying that you can't find antibodies in the stool and he had no idea what they were actually testing. I think to humor me (or to spite me), he recommended doing an endoscopy AND colonoscopy They also reran the celiac panel since my GP didn't do the complete test. Also tested my thyroid. The Endo and Colo are set for the 27th. I'm terrified and wondering if it's worth it all. But I'm one of those people that will doubt the Enterolab results if I don't do these tests and would be more likely to go off a gluten-free diet if I didn't have an official diagnosis. Help! I'm scared and frustrated. Why do doctors have to act like they know your body better than you do? He was so resistant to the idea of celiac. He said that a lot of people have those symtpoms, blah, blah, blah. Why can't I find a nice doctor who will take me seriously?????
  4. I'll let him know about those veggie burgers, thanks for the suggestion! Sounds like we'll end up having a similar kitchen arrangement as you. Too bad our cabinet space is severely lacking. I'm going to have to get creative! The fridge is going to need a good scrubbing and we'll rearrange it so my stuff is up top and he can have the rest. There's a lot of work to be done! I also called and left a message for the pediatrician. Hopefully I hear back from her tomorrow since she's off today. Will keep you posted...
  5. Fedora, You are right, who knows what an endoscopy will show. I'm willing to do it and I'm going to ask for it at my GI appt. It is weird that that score came out low since I'm obviously having intestinal damage with the lactose intolerance and b12 deficiency. I know gluten-free and a vegetarian diet are possible, he's just not willing to do it. Veggie burgers are too convenient for him to pass up. I did warn him that I'm going to need a separate cabinet, cutting board, toaster, etc. so he's prepared for the changes!
  6. Thank you both for your quick and informative responses! I have such mixed emotions right now and this helps to clarify what I need to do next. I haven't been dismissing dd's stomach complaints and I'll definitely call her ped to have her run the celiac panel. Hopefully the doc (and my daughter) will be cooperative! At my GI appt I am going to request that they run the complete celiac panel. I had edited my original post to add that I wouldn't think the endoscopy would show anything since my malabsorption score was normal, which according to enterolab, means that there isn't severe intestinal damage yet. My plan is to see the GI, see what tests he'll run, and then go gluten-free after testing. Regardless of what dd's pediatrician does, she'll probably go gluten-free too. Hubby refuses to do it, says it's too hard to be gluten-free and vegetarian Amy
  7. I just got my Enterolab results back. Geez, those were the longest 2 weeks of my life! I'm not surprised by the first 2 results, but I'm kinda suprised my fat score was in the normal range. At least I know what's going on with my body and I can see the light at the end of the tunnel. Gluten sensitivity Stool Panel Complete Fecal Antigliadin IgA 174 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 112 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) I'm going to take these results when I meet with my new GI on Oct. 9th. My regular physician has basically said he did all he could do for me and now I have to deal with the GI's. Should I push for an endoscopy (would this even show anything since my fat score was normal?) to confirm the diagnosis or should I have them run the complete celiac panel(my gp ran part of the celiac panel in April and it came back negative)? I feel like I need an official diagnosis to convince the rest of my family to get tested (even then, I'm not sure that they would). Also, what do I need to do to get my daughter tested? I would like to try to go thru her pediatrician. Does she need gene testing or the celiac panel? BTW, she's 5 years old, very small, and often complains of stomach aches (although that could be because she hears me complaining about my stomach hurting all the time, but I don't want to dismiss her complaints). Thanks for your help and suggestions! Amy
  8. Thank you all so much for your wisdom and support! I will print out that page from U of Chicago and bring it to my GI appointment. It's so frustrating when doctors act like they know so much about a disorder, but they are either using outdated info or just dismiss your symptoms. Hopefully the next doc is more open to investigating this. Thanks again!!!! amy
  9. So is that what my results mean? My total IgA is low and the results aren't reliable? I swear, medical professionals no nothing about this disease (at least not up here, but it seems to be a wide spread problem). I guess I'll request to the new GI that all of the tests are run. Yep, my plan is to learn all I can about going gluten-free and will start after my biopsy (which I will insist on). I'm getting to the point of not caring if I have a diagnosis and just getting started on my road to recovery.
  10. I was able to get a copy of the tests my gp ran for celiac. Here are the results: Tissue TransgluAb: result 0.9, Unitys: U, Reference Range: <20 EndomysialAb IgA: Result:negative, Reference Range: negative, Analyte Specific Reagent My gp says he doesn't want to run any more tests and that I should just see the GI again. Guess I'm still on hold until Oct. 9th. I did send out my Enterlab stuff yesterday, so I should have those results by the end of Sept. I'm so frustrated..... Input welcome! Amy
  11. Hopefully the Enterolab kit will get here today. I'm so ready to get it done and send it back out. Can't wait for the results! I guess since I'm requesting a biopsy with my new GI, I don't have to worry about traveling gluten-free, at least not yet. I've definitely been checking around the boards for ideas and how to deal with eating out, since we do that alot (although that may have to change). You guys are definitely very helpful! Amy
  12. Thanks for the advice. I don't have an appt until 10/9 and that's just a consultation with the new GI. I have no idea how long it will take to get the biopsy. It really sucks that you have to keep eating gluten so the tests show something. I feel like I'm poisoning myself! I'm going to ask for a copy of the bloodwork on Tuesday, when I go in for my B12 injection. Will definitely post the results. Yep, I'm in Vermont! I'm about 45 mins northeast of Burlington in the boonies. I'd love to meet more people up here. I don't know anyone with celiac disease or who is gluten-free. Amy
  13. So I called my gp's office to find out what test they ran for celiac. The receptionist pulled my file while I was on the phone, but she said that the file just said "celiac test, negative". I have to go back next Tues for a B12 shot so I am going to ask again what tests they ran and request the 4 tests that are usually recommended. I also made an appt with a different GI (not until Oct. 9!) to get a second opinion and hopefully request a small bowel biopsy. Hopefully this will get things moving in the right direction. Also checked and saw that Enterolab sent out my test kit, so it's on it's way! Amy
  14. Thank you all so much for your suggestions and sharing your stories. This is all really new to me and is very overwhelming. I don't know what specific test my gp did for celiac, but I will definitely ask him and find out the results. I also found a support group website in my state and there are recommendations on doctors to see. I'm going to see if my insurance will let me switch GI's to someone who is more knowledgeable about celiac and gluten intolerance. Should I be seeing an allergist too? Does it matter at all, do I really need a diagnosis or should I just go gluten-free and see if it works and stick with that? I did order the test from Enterolab to see what it turns up. Hopefully that will arrive in the next few days. In the mean time I'm trying to make the transition to gluten-free. It's really difficult that I can't have dairy either. I'm fixated on what I can't eat. I'll also be traveling in 2 weeks for 5 days, which will take a lot of planning. Thanks so much for all your help! More advice is always welcome!!!!! Amy
  15. Hi! I'm new to these boards. I've been doing a lot of research about gluten intolerance and celiac disease. Here's my history, I'm at a loss as to how to proceed. I've always had "stomach issues" thought to be related to anxiety. Lots of nausea, lack of appetite, cramping throughout high school (about 15 years ago) and college. This past April I had a sudden onset (over a weekend) of severe cramping, bloating, gas, diarrhea, loss of appetite. After about 2 weeks of this non-stop I went to my gp and he tested me for celiac sprue. The test came back negative. An ultrasound to check for gall bladder disease, etc was also negative. I was referred to a GI for further testing and was found to be lactose intolerant. I've been dairy-free since the end of June and my sypmtoms have continued and actually worsened in the last few weeks. The GI really wasn't helpful and blamed my probs on a "functional bowel problem" or IBS. I was also just found to have a vitamin B12 deficiency and started on weekly shots yesterday. I'm so uncomfortable every day, it's really miserable. Are there other tests I should recommend that I have done or should I go gluten-free and see how I react? I'm so tired of feeling this way every day. Amy