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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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About grannynanny

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  1. Would love to meet others in beaches area to share recipes, restaurant info, etc.
  2. Indigestion And Other Awful Symtoms

    Hi Steph, I'm taking Three-Lac, sold by Global Health Traxx. I believe it's considered a probiotic, but it's definitely touted as helping to control the candida overgrowth which our celiac symptoms have created over the years. Sue
  3. I recently moved to Sussex County, Delaware and must start all over with doctors! Anyone know of a celiac-knowledgeable doctor in the beaches area? Also, any support groups around? (The CSA website gave me only one link, and it didn't work.) Thanks. Sue
  4. Olive Garden

    Celia, I did ask the waiter to make sure that they didn't add croutons to the salad and explained to him that I had a gluten allergy, which meant no bread or pasta. He even asked me a little more about celiac, out of curiosity. So I really don't think that contamination was the issue. I'm just about convinced it was the dressing, or perhaps the marinade used on the chicken. Anyway, I suffered for three straight days but am finally feeling whole again! And what a great groups of folks here at celiac.com! Sue
  5. Olive Garden

    To Laura: No, you weren't too harsh. I understand your passion and where you are "coming from." And I appreciate your concern. To all: I think eating out is a huge challenge unless we are assured, IN WRITING, that we are in safe hands. Seems to me the only way to know for sure is if the restaurant provides a gluten-free menu. Then we know that the management, the kitchen staff and the wait staff have all been educated about gluten-free foods. Otherwise, speaking to a manager, or a chef, assures us only that that particular person is or is not knowledgeable. Our experiences may be completely different from one Olive Garden to another, or one Maggianos to another, etc. The manager of one restaurant I visited in the Chicago area (not a chain, but a very trendy fine-dining establishment) told me that there was gluten in everything -- rice, potatos (without an "e"), etc. Obviously, I was "on my own" that night! The challenge continues . . . Sue
  6. Olive Garden

    I guess CarlaB knows more about Maggianos than I do. I usually stay away from the Italian restaurants because of all the pasta offerings. But I would add to your list of Chicago restaurants Wildfire, which has a gluten free menu. They have steaks and chops, but a wider variety of other offerings. They have a location a few blocks from N. Michigan St as well as a couple of locations in the suburbs. Sue You are absolutely right, happygirl. I stand chastised and will hereby pledge to be more proactive about ordering gluten free. Sue
  7. Celiac Sprue & Doctor Too!

    Russ, You're not going to believe this, but not only do I have Celiac, I am also Malignant Hyperthermia susceptible! I know the two are completely unrelated, but I just thought I'd share that little item with you. In fact, not only am I MHS, but I founded MHAUS in 1981 and attended the ASA meeting in Chicago in October where MHAUS had a 25th anniversary reception I don't usually spend a lot of time on this board, but I sure have been all around it this weekend. You can see my posts nearly everywhere, but my complete story was added to the "Tell your complete story here" thread under "Coping (I think -- or maybe post-diagnosis)." Turns out I was glutened yesterday and I haven't been up to doing anything more than sitting in front of the computer ever since. I think it was my early MH-related experiences with doctors which made me realize (scarey!) that I knew more about it than they did. Those experiences led to my founding MHAUS, but also helped me take charge of my own situation with regard to Celiac. And I think doctors are seeing this more and more with the availability of information on the internet. My generation of doctors tended to be dismissive of anything they didn't know or understand, but your generation seems to be so much more receptive and unguarded. Yea! Sue
  8. Hello - I'm New

  9. Didn't see anybody mention Dr. Fassano at the Univ of Maryland Medical Center in Baltimore. He is one of the best known celiac experts in the country and is usually quoted or featured in any articles you see in the popular press. He is a pediatric gastro (?) and only does the celiac clinic on Fridays, but I made an appointment with him for this Friday, months ago!
  10. Okay, here goes! I hope I can write this in a way that is both cathartic for me and doesn't bore the hell out of the reader. My MAJOR symptoms (and stay tuned, I'll talk about my minor symptoms later) began to occur about eight years ago, following two fairly major surgeries (which involved some bone transplants). After eating out one night (and it was a yummy shrimp pasta dish), I spent the next 20 hours on the bathroom floor -- and I really had to make some fast decisions about which end to place over the toilet first! (Sometimes it was the right decision, and sometimes it wasn't, if you get my drift ). And, to top all, I was a guest in my son's and daughter-in-law's home ! Crawling downstairs in the early afternoon, my d-i-l ran me over to the local hospital ER. After rehydrating me, the doctor and I decided it had probably been the shrimp I ate the night before. Bouts of V&D started to occur more and more frequently over the next year or so (I'd now begun to rule out bad food) and my doctor sent me to a Gastroenterologist for some diagnostic work. I was scoped here, there and everywhere, drank barium for swallows and enemas, ate nuclear scrambled egg sandwiches (the gastric emptying studies), and still learned nothing. I was switched from Zantac to Prilosec and, eventually, to Nexium. Now, a move to a new city, so I had to start from scratch with all new doctors And now my symptoms are starting to escalate from occasional bouts of V&D to almost daily bouts of nausea, cramping and bloating. Nausea would sweep over me for no apparent reason several times each day -- sometimes it lasted for only minutes. I ate Tums by the carload and made my visits to the ER on a regular basis for IV fluids and suppositories (when I had barfed to the point that my stomach lining was all I had left -- and it was seriously trying to come up!!). And NOW I'm convinced that I have a) stomach cancer, some rare disease that no one's ever heard of or c) WORMS (or some sort of parasite I brought back from one of our overseas trips)! I couldn't decide which I had, and went back and forth, giving each equal weight. Or, maybe I had them ALL!!!!!!!! A food allergy? No way, I was MUCH too sick And then came D-Day (that's D for diagnosis, self, mind you). It started a little differently than the others. I woke early in the morning with stomach cramping and bloating. By mid-morning, the cramping had become so bad and the bloating so severe that I looked like I was 9 months pregnant -- WITH TWINS!!!!! I went by ambulance to the hospital (and BTW, they really pay attention to you in the ER if you arrive by ambulance!) where I was given a morphine drip for the pain and testing began. A gastroenterologist and surgeon were called in and they started preparations for surgery, thinking I had an intestinal blockage. But well, no, I didn't. So some more tests were done, and I swallowed even more barium and then, guess what? The pain subsided. After 5 or so hours, and 2 or 3 barium milkshakes, I felt fine. Nonetheless, they admitted me (they didn't believe me that I was fine ) for 24 hours at which point I basically released myself from the hospital (my roommate was driving me c-r-a-z-y and I had to go home to get ready for company!). Dr. P. (the Gastroenterologist) wanted to see me NEXT WEEK for some additional follow-up, but you know how that goes. His scheduling secretary said he couldn't possibly see me next week, or the week after, and since I would be gone the week after that, it would have to be next month. Soooooo, the next week, when I woke with the beginning of the same symptoms, I did what everyone in his right mind does these days, and ran to the computer to Google "stomach disorders." It wasn't long before I found Celiac, and after spending the day reading information from numerous websites, knew I had found out what was wrong with me!!!!!!!! Hoorayyyyyyyyyyyyy!!!! I immediately went gluten free (although I had a lot to learn, and still do ) and began feeling better within 24 hours. In the 2 1/2 (or is it 3? -- time flies when you're having fun) years since being gluten-free, I have had no more bouts of V&D, no more nausea (yea!), occasional cramping and/or bloating (especially if I get glutened), and I'm like a new person. Now, back to my followup with Dr. P. I saw him nearly a month later and laid out my case for Celiac. He, of course, was skeptical, but was willing to do the blood work to rule it out. Hmmmm, do you see where this is going? "But, Dr. P.," I said, "I've been eating a gluten-free diet for 3 weeks now and, from what I read, it could skew the results." "If you have Celiac," he said, "you've had it all your life and 3 weeks of not eating gluten won't make any difference." When I called for the results of the blood test, his nurse told me that one reading "was a little elevated," but nothing I should be concerned about. I guess I should try to find out what the reading was, but I've kinda sworn off going back to mis-informed Dr. P. and his mis-informed nurse. Now that you've waited so patiently, I'll reveal the MINOR symptoms that I associate with Celiac (remember my earlier promise? 1. celiac disease is an auto-immune disease, right? My dental enamel was so badly damaged in childhood that a couple of my teeth grew in blackened with decay (at age 7, thank you very much!). Thus began my lifelong history of dental problems (an understatement) including a partial denture in second grade, and progressing to the loss of every tooth in my head by age 50. I now have a complete mouthful of implants, including bone that had to be taken from my hip (see paragraph #1). 2. I had (until I went gluten-free) DH on my scalp and, on very rare occasions, a very sore red rash all over my abdomen (DH?). 3. I became infertile before trying to conceive my third child (mid-thirties) and had completely finished with menopause by about 38. (No explanations given.) 4. I've hated milk all of my life. 5. Bone and joint pain (especially my right hip -- almost completely resolved since going gluten-free. 5. And, oh yeh, I'm overweight (30 - 40 lbs. and have gained now that I'm not throwing up all the time! And now, for my final encore, I'll tell you what I suspect has been (unknown) Celiac Disease in relatives. My father had a lifetime of "stomach problems" ranging from GERD to intestinal bleeding to "severe and dangerous" anemia at one point in his mid-seventies. Doctors couldn't find the source of the bleeding and eventually he recovered (although he continued to be anemic until his death a couple of years ago). His sister, my aunt, began vomiting blood during a trip abroad (in her fifties). Doctors in Belgium removed 75% of her stomach, which had ulcerated, in order to save her life. So she was one of the early gastic bypass patients (involuntarily), dropping from a normal weight to about 75 pounds, where she stayed until she died a few years ago. Hmmmmmm . . . And now, for the final chapter of my story (although I retain the right to add other little tidbits as I think of them I feel no pressure to have my Celiac diagnosed by medical tests. Certainly my 3-year stint of gluten-free eating has been proof positive enough for me. HOWEVER, . . . MY KIDS AREN'T PAYING ATTENTION WHEN I TELL THEM NOT TO EAT GLUTEN !! So, I have made an appointment to see Dr. Fassano in Baltimore later this week. I'm anxious to know whether he thinks I need scientific verification of my status and (now that my kids are starting to have kids of their own), what I should tell my family. So do stay tuned, I may have another follow-on by this time next week. P.S. I've loved this Board, and all the good information its members have given me.
  11. Uhhh...?

    Sinenox, It does sound like you need a good workup for rectal bleeding. BUT, if nothing of note is found, I'd just like to relate my sense that it might POSSIBLY be related to intestinal/stomach damage due to celiac disease. My father had severe internal and intestinal bleeding for years and nothing could be found during his many hospital stays. We nearly lost him at one point due to "severe" anemia, but the doctors couldn't find the source of the bleeding. They certainly didn't consider that he might have had Celiac-induced anemia (or perhaps even a permeable gut?). He died a couple of years ago (from numerous other complications, not celiac disease), just about the time I was discovering that I had Celiac. The more I have learned from reading, and from others on this board, the more convinced I am that my father was a lifelong Celiac sufferer (I can remember his terrible stomach problems even when I was a young child) whose symptoms nearly cost him his life in his seventies. Sue
  12. Olive Garden

    I've been on the gluten-free diet for 2 1/2 years, mostly with good success. But yesterday, I ate lunch at an Olive Garden, ordering about the only thing on the menu which appeared to be gluten-free -- the chicken caesar salad. About half-way through my meal, I began to experience mild celiac disease symptoms and have been dealing with them ever since (about 20 hrs later). I am quite suspicious that the caesar salad dressing they used had gluten. The only other thing it could have been was the Sweet and Low that slipped into my iced tea -- be careful, Olive Garden now disguises their sugar packets so that the Sweet & Low, Equal, Splenda and sugar all look alike!!!!!!!!!!! My experience with Olive Garden is that there is NOTHING on the menu for a celiac disease sufferer. That said, I had dinner at an Olive Garden (we selected it because we were travelling and it was the only restaurant we could find near our stop for the night). They had risotto on the menu -- hurrah!! And I ordered it with no ill-effects! I wonder what speaking with a manager does? If they have a special gluten-free menu, it would certainly be worth it to speak with the manager, and perhaps do a little advertising to that effect. Usually, when I tell a wait-person that I can't have gluten, it sets off a series of running back-and-forth from our table to the kitchen, several times, thus delaying our ordering. It's also embarrassing if we're eating with others. So I usually end up ordering based on the ingredients mentioned on the menu. A mistake, I know, so I deserve every stomach pain and run to the bathroom that I get!! We lived in the Chicago area until recently, and so many restaurants there were becoming savvy about celiac disease -- some even offered a special gluten-free menu. Maybe such awareness will trickle down . . . ?
  13. Electra, I, too, had a trip to the ER by ambulance a couple of years ago (before I knew I had celiac disease) with pain and bloating. It was like being in the final stages of labor, but the pain was just under my ribcage. I was on a morphine drip for the pain and after numerous MRIs and CAT scans with barium, it resolved (I think the barium acted like a huge Tums). Anyway, when the pain started again a week or two later, I got online where I found out about Celiac. I immediately cut gluten from my diet and felt like a new person! Nothing in my hospital chart says "celiac attack," but we know, don't we?
  14. That's so interesting . . . and such an epiphany for me. Thanks.
  15. Dh On Scalp- Anyone?

    I used to get exactly what you're describing all over my scalp -- I would pick at the sores because they bothered me, then they would crust over. Since going gluten free, the scalp has improved alot, but the shampoo and conditioner I use has probably helped, too. It is Frederic Fekkai and is VERY EXPENSIVE, but worth it in several scores. I never knew shampoo had wheat in it!! One last note is that every once-in-awhile, I will get a huge red welt (hive?) in my hairline -- always in the same place, the right forehead -- haven't noticed a pattern, but it happens every 3 months or so. Anyone else? Any ideas about cause?