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
My good friends know of my dire situation so they take it upon themselves, after a learning process highly facilitated by me, to make sure that I am safe (special cutting boards for me, calling to read me ingredient lists from packages, etc), but those not as close as they are might not completely understand, or 'get it'. That means that it is my responsibility to take care of myself that night and ensure that I am safe (until the world is a better place and we're not such a SHOCK to everyone).
If I am uncomfortable inserting myself into the necessary food conversations, or perhaps it's not entirely appropriate for whatever reason (that's up to you to decide), I make sure I am either not hungry or I bring my own food. Whether you're diagnosed or not, stating a "severe reaction to certain foods" should be enough to start the pertinent conversations. You'll get more comfortable with those conversations the more you have them. Eventually you might even get to the point where the explanation includes "if you want anyone else to be able to use the restroom this evening it might be a good idea for us to talk about the menu"!, for those who still have reservations. Talking to the chef, organizer, caterer, those are all requests that are not unheard of, nor are they asking too much
Often it can be difficult to accommodate our extreme sensitivities, which is why I always have food in my purse. Sure, you're going to miss out on some awesome food here and there, but you won't be sick afterward! I don't like to take any risks so unless I can talk to someone who cooked it, I won't touch it. The people around you will be curious and ask why you're not eating, or why you just pulled a small meal out of your bag. That gives you the opportunity to educate people that might not otherwise learn about the difficulties the gluten sensitive/allergic/intolerant face in these situations that others might just take for granted.
I would be HIGHLY interested to find out what repercussions this idiocy may have on his job/reputation/life. This is not unlike malpractice! If this had been a shellfish or peanut allergy he would have a dead body on his hands. No facebook post is going to get him out of that situation. Someone mentioned the DA and CO laws, getting a soundbite on video, contacting his employers, etc.
Can we get updates from anyone that is going for the throat on this guy? I would like to know when he has been appropriately dealt with, personally.
Looking for anyone with any experience with this problem, as the doctors look at me curiously and respond with a "hmm, I've never heard of that before".
Let us start by saying I am Celiac - gluten free since diagnosis over 3 years now. A never-cheater, living in an entirely gluten free kitchen and home, very careful about food intake and happy to be healthy. On to the weird stuff...
Let's say that you've just finished eating a meal, a big one or a small one, a definitely gluten free one - doesn't matter what the food happened to be aside from it not containing gluten (I've ruled out food triggers of any kind concerning this issue and the time of day is no matter as well). Let's say you finished your meal and were comfortable - so you leaned back in your chair while everyone chatted over their plates. Perhaps your behind was 4 or 5 inches from the back of your seat so you could be said to be "reclining". Five or ten minutes later you get up and go about your business, in an upright position, and your stomach slowly begins to swell. We're talking 7 or 8 months pregnant swelling. Just absolutely full of air, or something, or an alien, who knows. To the point that it is only comfortable to bend at the waist to relieve the pain and pressure, or be laying down curled around a pillow for a couple hours. The eventual 2-3-hr-later result involves a lot of air... escaping... the body.....
This happens when I lay, when I lean (seriously!), when I bend over for more than a minute or two; any time I do not stay completely upright for at least two hours after eating. IF I do lay down after eating I can avoid this giant bloated belly by staying in that horizontal position for 3 hours or so. As you can imagine, this interferes with normal life, with work, with my relationship. This has been going on for at least 10 years.
Does ANYONE have any experience with this? Doctors don't seem concerned. I'd like to plumb the depths of your experience before I demand my doctors refer me to all sorts more tummy-insides-guts specialists. Thanks in advance.
You and my boyfriend, dear husband of Celiac, should high five! We've been dating for a few months and up until that point he had no idea what Celiac Disease was. I am a strict strict strict NO GLUTEN girl, and not only did he pick up on it quickly, but did research *imagine that* and wanted to learn as much as he could about keeping me safe and healthy. Flash forward to our decision a couple weeks ago to move in together, without having the "gluten free kitchen" talk.... Yes, I know, whoops... But what did he do, he took all of the glutenous food to work to quickly eat and get rid of, he threw away the pasta in the pantry, and will now only buy foods that he either knows by reading (very carefully and learned-ly) are safe for me or by asking me about questionable ones. I didn't ask him to do any of this!!! I was shocked. (I swooned a bit, I will admit)
He now even gets caught up educating others who don't know about Celiac disease and lurking gluten! (well, he partly likes to know more than everyone else, so that helps, heh)
There are conscientious and thoughtful people out there, looking out for our guts! It helps the Celiacs like me, who feel still a bit alienated and judged by many, feel a little more accepted
Say, for instance, someone with all of the symptoms for years is finally blood tested and the antibodies are present. This person is sent home by her "doctor" (he was in fact a real doctor, just an idiot) with a website in hand and no other information or advice. No mention of biopsy. Nothing. I go completely gluten-free that DAY, and begin to do research. This is now 2 years past and I want to have a definitive diagnosis of Celiac Disease for the future possibilties of Celiac and insurance. I absolutely cannot eat wheat again. I will be at death's door ill, lose my job, the whole fun shebang if I do the 3-month-kamikaze reintroduction of wheat. But I must be diagnosed officially.
From all of my research I've learned that the blood test only shows gluten sensitivity, not that it can diagnose the presence of actual Celiac Disease (in comparison to gluten allergy and/or sensitivity).
In this instance, is the gene test not considered a diganosis? It really just gives an indication of risk? From what I've looked into so far, I was under the impression that the gene test was a way to actually medically diagnose full-on Celiac.
(I'm looking for opinions (or people that are medical professionals of course!). I'm the only one in my life that is gluten-free so my conversations are rather one sided )
I just wanted to wish you luck with it all, even though I have no advice on Tennessee-ian therapists (move to Seattle, it seems most of the city is gluten free!).
As your body recovers (and believe me, it's going to take a spell) hopefully your husband will be able to see the changes in your body, mind, spirit, and emotions. He will see the toll this has taken on your body as it makes its way to a normal he's never seen before, and maybe understand a little better how hard this has been for you to deal with. The guilt of always being "that sick person" is something I think a lot of us feel. I've been gluten free for nearly 2 years now and I'm still "the sick one" all the time, and get picked on for it. Unfortunately, our bodies are just very different from everyone else in their reactions to seemingly normal stimuli.
So, I wish you luck. It's only been 3-4 months. You WILL start to feel better!! And I am a firm believer in counseling . Just be anally vigilant about your food, be "better safe than sorry" ALL of the time, eat your veggies (hee), and you'll see that even your head will feel clearer than it ever did before.