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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 marycubs

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  1. Hi - I posted this last week: "I found a site that I thought has a good overview of Celiac Disease - and wants to increase awareness of celiac disease. The personal stories section highlights how varied the symptoms can be - and how frustrating the lack of diagnosis can be. In case you haven't seen it : http://www.celiacawareness.org" Also - look at the posting in this category about the NIH promoting celiac awareness. There's a link to order publications - I've ordered 50 and am going to forward them to my local TV/radio/newspapers. If a bunch of us do this - it will help awareness. Mary
  2. The website (www.celiac.nih.gov) has some educational materials for patients - I'm going to order one batch (25 for $5) and send them to some local physicians/GIs - including the ones who did not diagnose me correctly for 3 years. I'll have a cover memo asking that they review the material, as like many people, I have celiac disease and was not diagnosed quickly - I know they get lots of reading material all the time - but maybe a few will read it ?? I guess its worth a try. Maybe I'll send it in to our local news paper and tv news - they have a health news segment and could include it. Mary
  3. Hi - I found a site that I thought has a good overview of Celiac Disease - and wants to increase awareness of celiac disease. The personal stories section highlights how varied the symptoms can be - and how frustrating the lack of diagnosis can be. In case you haven't seen it : http://www.celiacawareness.org/ Mary
  4. Vitamin B12

    My B12 was at 307 several months ago and the doctor said it was fine and never retested me...saw the posting that new studies show under 400 may mean trouble. I'm going to a new doctor soon - am looking at all of my lab work from the last year (since being diagnosed with celiac disease May 2006) - and making a list of questions for her. B12 is on my list. I sometimes get the tingley feeling - and also bump into things - have been bruising easily too. I never knew that was part of B12 def. ( I am iron deficient - and the supplements haven't helped too much - another question for my doctor) Is ringing in the ears anything that is associated with a deficiency ? Mine started a few months ago and havent' stopped. I know tinnitus (sp?) isn't uncommon - but wonder if it's associated with celiac disease since I never had it before ??? thanks - Mary
  5. New To Celiac...now What?

    Hi Irishgirl and welcome ! This is a great forum to look at - there are many knowlegeable people here that can help you out. I do not tend to participate often - but come back to read the tips and wisdom of others at least weekly. There's a Delphi list of what foods are gluten-free (celiac3270 can help you with it) and a newbie package that Nini can send you. I was diagnosed a year ago after going through a few years of increasing symptoms (bloating, diarrhea, anemia, fatigue, depression, etc). I recognize I was lucky not to have suffered longer. While my symptoms are much better than a year ago, I find I am still not to where I want to be so am now exploring further testing to check for other auto immune disorders. I don't really eat too many of the gluten-free foods - due to the expense - but treat myself now and then to pasta (tynkyinada is best to me) and flax seed bread by Kinnikinnick. I also like Ener-G sesame pretzels. While the diet may seem bad at first, you really do get use to it. I'm eating healthier than ever - fruits, veggies, plain chicken, fish are all okay. Be aware that many processed foods (canned soups, salad dressing, even some OJ and lemonade) have gluten added to them. You'll need to educate yourself by reading this board and I suggest Danna Korn's book Wheat free Worry free, and if you want more technical in depth information, Dr. Peter Green's book Celiac Disease - A hidden epidemic. Here's a link that also may help: http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm - check out celiac disease info for patients and the one for Doctors - it speaks to what follow up tests should be done. Remember - you are not alone in this - there are more and more people being diagnosed (finally) with celiac disease. hang in there Mary
  6. Usa Weekend Magazine (sunday Paper)

    Great to see an article in a mainstream paper !! I emailed Dr. Mitchell thanking him for the article and explaining that over a 3 year period I had 4 Drs. (including a GI) label my symptoms as IBS and a result of stress/depression. After being being sick of feeling sick, I did research on the web - asked my Dr. for a celiac disease panel and was confirmed a celiac disease with an endoscopy. I also mentioned that many people with celiac disease have other auto immune disorders. (I'm in the process of trying to figure out why I am still ill after 1 year of being gluten-free)...so a gluten-free diet isn't always the only answer. I asked him to please continue to talk about celiac disease in his articles - as this is a very common disease that needs more attention and awareness. I encourage all of you to email him - if you click on the article - there's an easy link to "contact us"..and send a note to him... I've decided to start emailing papers, medical talk shows, news media, etc, to try to bring more awareness to this disease. take care - Mary
  7. Something Got Me :o(

    Check the cocktail sauce - I was glutened by that once... it was a store brand. Good luck ! I know it can be hard to figure these things out. Mary
  8. Sliding Backwards

    Thank you all so much for your ideas. I hardly slept last night due to D, stomache pains, etc...so it was sooo great to read your messages this morning. Lollie - thanks I will check on the sleep apnea. I didn't know that could be associated with the palps. Ursula - I never would have thought of watermelon as a source of potassium ! I do have concerns about Lipitor as well (or taking any other new drug at this point). I feel like my body must be adjusting and that is why my cholesteral has suddenly shot up. And Ms. Sillyak the pedialyte is a great idea too... I will give it a try ! I think you all are right - I need to get back to basics - eliminate and keep a food diary to figure things out. While I like my Dr. (at least she knows what celiac disease is - unlike my previous Drs.) she doesn't look at the whole picture -but seems to treat each symptom/problem separately. Thank you again for your suggestions - Mary
  9. Hi all - I've not been an active participant - but periodically come in to read your wisdom (usually when I'm feeling down). This site and the people who contribute really are wonderful. I was diagnosed May 2005 and have been gluten-free except the errors along the way. I am committed to the gluten-free diet. After going gluten-free last year I felt much better for a few months. I'm still better than I was a year ago at this time...but feel like I'm sliding backwards. I'm really not bummed about the diet - I can handle that. It's that I am soooo tired of feeling tired and having no energy. I'm 42 and feel 88 energy wise. I also am still having D - but not to the extreme that I had a year ago. I was anemic, and my levels have increased - but still on the VERY low end of the scale. So, I'm on iron supp, multi, D, B12, and Cal-Mag (all gluten-free). I see a Dr. who keeps a check on my levels..and checked my thryoid recently - said I'm not hypo, but on the low end of the scale. I now have high cholesteral (never had a prob before) and she wants me to start taking Lipitor. I've recently been diagnosed with premature ventricular contractions (heart palps are waking me up at night). Again, the Dr. says they aren't an issue -very common - but one more new thing. I see a therapist for depression (related to other life issues - empty nest, lousy job, broken heart) It's been a tough year. BUT I am making positive changes - going back to school & I bought a new home. After reading a post below - I've decided to go back to veggies/fruits, plain meat. I've been eating too much rice & potatoes. I'm also going to start probiotics. I also just bought Dr. Green's book. I guess my question for you all is did your energy levels improve in less than a year ? Should I still be experiencing D - (and still always floating) ?. The GI that did the biopsy said my damage was 'significant'..so perhaps I'm just not being patient. Any help/encouragement you could provide would be appreciated. thank you !! Mary
  10. Trouble With Doctors...

    Nini - Just a word of sympathy for you. I went through such frustration with my own diagnosis..It took me 4 doctors (including a GI) before I found one that knew about celiac disease and agreed with my self diagnosis - and didn't just tell me its stress related or emotional. I can't imagine how much worse it must be for you when your dealing with your daughters' health ! Hang in there and I hope you find a good Dr. out there !!
  11. A friend at work sent this link to me....Its great that Celiac info is getting out there and going "mainstream". (However, around my home city the products that are out there are still pretty limited. But no doubt it is getting better !) Mary
  12. Penny - If your doctor hasn't checked your thyroid out yet, have that tested. A friend of mine had hypothyroid (low) and the forgetfulness, brain fog was very noticeable. Mary
  13. Hi - I agree with Coultier - I found Danna Korn's book Wheat Free Worry Free very helpful ! Mary
  14. Help! Glutened By A Friend!

    Okay - just to add a little humor to our gluten free lives: when I read the topic "I've been glutened by a friend"... the Rollings Stones song "I'm just waitin on a friend" came to mind. I bet there are alot of songs we can play with - To the tune of "Born Free"... (for all you age 40+ posters): "Wheat Free... though pizza surrounds us... our hotdogs are bunless ... Wheat Free... we must continue to be"
  15. Where To Go From Here?

    Hi and welcome I'm only a month into being Gluten Free myself, so I'm still learning. I searched the web and have found this site very helpful...I've spent lots of time reading past posts and reading what others think about certain brands of gluten-free foods, what advise they gave etc. Once the relief of finding out what you have is over, the reality of this being a life long change sinks in. It is a change - but just takes time to read, learn and find your way. I recommend Danna Korns' book Wheat Free Worry Free; the Art of Happy, Healthy, Gluten Free living. It's in paperback - and when I looked on Amazon they had used ones - so it won't hurt your wallet. I'm only 1/2 way through the book - she has a chapter or two of recipes in it - but it is more of an explaination of Celiac Disease - and speaks to the impact this has on your life - because it does - but also keeps it in perspective. The diet may be inconvenient, and difficult at times - but at least it is something within your control. I had the 'typical' symptoms - digestive issues, fatigue,anemia...and after 5 weeks I am definitely feeling better. I had one bad episode after eating a taco..but other than that my body is feeling better and I feel I'm on the road to recovery. Good luck - and hang in there !