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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have been on thyroid meds for about 15 years. Last year I was diagnosed a Celiac and have been on a gluten-free diet since. I had asked to be retested a few months back and they were able to reduce my dosage based on the results so I know it is improving for me.
I actually did get a tattoo after my diagnoses. Some would question how relative it is but for me, since it was a colonoscopy that finally led to the diagnoses, it seemed to fit. I will let you figure out where I got it but it is a circle with the line through it in the middle is an arrow pointing down (to mean, exit only). Now of course it will be 9 years before the GI doc does another colonoscopy so he will get to see that (hopefully once I'm under and they roll me over..lol) but my dermatologist got a kick out of it when she did my head to toe skin check last month. I guess if, as I age, it sags, nobody but the person who sees me naked will know.
So sorry to hear things haven't gotten better. As I was reading through all the positive feedback from other members I was thinking how tomorrow will be exactly 1 year and it has gotten better. I don't crave bread anymore and like you, that was a staple for me. I do have Udi's most days for lunch as I like sandwiches but no other bread. I have good days and bad ones too. Sometimes I'm still very angry...like just now when my co-worker walked in w/ a huge brownie and was offering to share. Or the days they cater Valentino's (very yummy italian food restaurant in these parts)...I can smell it from my office. But from where I was last year...I cried when someone walked by w/ lasagna and a breakstick...I'm doing so much better. I wish only the best for your health.
I got a phone call on my birthday and was told I have Celiac disease. Not having a clue, as they were looking for why I was anemic and hadn't considered the 25+ years of IBS might be related, I asked "how do you spell that?". She told me how to spell it and that I was going to have to rid gluten from my diet so naturally my next question was "what is gluten?". I don't remember much after that...I heard something like blah, blah...no bread, no pasta...blah, blah...no beer, no pizza....blah, blah...then I started to cry. My follow up appointment was almost a month later and by then, I had done all the research and had found this Godsend of a website. Basically I spent 5 minutes with him and was told to go talk to a nutritionist.
That will a year ago this Thursday...life is so much better now that I know.
I have a sister who after testing negative to the antibodies started a gluten-free diet and feels great. She won't got in for further testing as the way she feels is proof enough. I'm with all the other responses, you are a Celiac and more testing isn't needed. I'm glad you're feeling better. My symptoms were very similar to yours and I spent years w/o a correct diagnosis. It wasn't found until I became anemic so be thankful you found that smart doctor early in the process (2 misdiagnoses isn't bad...I went 25 years and saw countless docs). Seems like things are going very well for you now that you know what not to eat...same here. Good luck with your journey and enjoy all those naturally gluten free foods & drinks out there...time to really start living!
At the grocery store last week I asked about Gluten-Free beer and the manager pointed me to Mike's Hard Lemonade Light and the packaging states it's gluten free. He said he asked the distributor and was told it's just the light that's Gluten-Free. I hadn't had any problems w/ the first few I drank but in the last 2 days, I had 2 each day and today my tummy is a bit upset so it's very possible that even though it's packaged as Gluten-Free it's not completely. I know my friend said right off (when she saw me open it) "hey, that's a malt beverage, how can you drink that?". So I guess I will make sure I drink it on a very limited basis as I can't think of anything else that would have gotten my tummy in a bind (it's not bad but I can certainly tell somethings not exactly right).
That's pretty much how it went for me as well. It's been almost a year and I definitely feel better about it now. I have actually taught my GP a few things (and I certainly don't expect her to be a celiac expert, heck...my GI doc isn't) and we seem to be getting it all figured out. I told her how I had researched the affects on your thyroid so we tested me again (sooner than needed) and found we get to lower my dosage. Will see her next month for another test to see if we can lower it some more...with any luck, it's one medicine I can stop taking. She's been great but nothing has kept me more informed than this site and researching the net.
Good luck, Smead!
When diagnosed last fall w/ Celiac, my GI doc ordered B12 shots for me every other week for 6 months and now I go monthly. As far as my primary physician is concerned, this will be a forever thing for me...monthly B12 shots. Oddly, it was never mentioned that I should take a supplement. For me, I'd rather do the shot.
I am less than a year into my diagnoses but I suffered for over 20 before I was properly diagnosed. I saw many doctors over those years and was always sent away with "IBS" and your tiredness is "normal". UGH! My little sister has had the same stomach issues but her initial testing was negative. I encouraged her to try the diet as she didn't really have the money for further testings. She has been gluten-free for almost 2 months and feels great. Last weekend while traveling, she ate a sandwich and as of last night, she is still suffering from the set back. I would suggest the same for you...try it for 6 - 8 weeks and see if you feel a lot better. If, at that point, you still aren't convinced, eat something with gluten and see how your body reacts. From what I understand, there are many people who test negative but are doing so much better with a gluten free diet. I too am an italian food lover but I have found gluten-free pasta that tastes just as good so I don't feel like I'm missing out on everything. Mostly, it's the convenience I miss but I'm adjusting. Good luck!!
Not sure what I'd do w/o my Udi's....it's my answer to the bread issue and I have sandwiches everyday for lunch. Hope it's not too bad for ya. If you don't have problems and want to purchase it again. There are coupons and it generally goes on sale every month or so (at our local grocery store's health market) so I stock up since you store it in the freezer anyway.
My little sister went gluten free a few months back (after testing negative and at my request to give me 2 months and see if it makes a difference). Last weekend while traveling, she ate a sandwich as she felt guilty about telling my sister-in-law (who prepared them) that she couldn't/shouldn't. Needless to say, she was sick the rest of the weekend. She missed out on a lot of fun and what would have been a great dinner that evening but she couldn't eat or drink as she was in so much pain. On the bright side, she knows that even though she didn't test positive for Celiac, she has an intolerance. She says she hasn't felt this good in years. Exactly the way I felt after being diagnosed and going gluten-free. She's almost 10 years younger than I am so I'm very grateful that she got a handle on it and will not be doing more damage to her body due to lack of knowledge.