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
The other day I went to Starbucks and ordered a cinnamon dolce latte. I had taken just a few tiny sips and then decided to research if it was gluten free for peace of mind. I read that the flavor powder they use has "denatured wheat" in it and that the "gluten protein was removed". Regardless, I quickly threw my drink away. I know that it was my own mistake for not checking before I spent the money on it, and I suffered the consequences with horrific symptoms on a 4 hour car trip >.< My question is, is it really possible to remove gluten? I would guess no because I still responded to the so called denatured wheat. Any input or info about this? Thanks
This is a very valid question. I simply think it is because it's something we have to explain on a daily basis. Who likes explaining the same thing over and over over? It can be frustrating. It seems that most people are better at understanding, say, a peanut allergy. Most people do not know what gluten is, I sure didn't before I was diagnosed! When I think about it, I'm not exactly angry at the person, but more so angry at the situation, if that makes sense. I think our anger roots from having to explain it so many times, and people still don't understand.
I've also had a similar experience as posted above... A lady my mom works with told me that she had Celiac as well. (This was when I was first diagnosed). I believed her at first but as time went on and I did more research, it seemed as if she was stretching the truth... this was confirmed when she walked in with a big bag of Chick Fil A and said that she didn't get me a chicken sandwich because of the bread, but I was "welcome to have one of the fried chicken strips, because those are gluten free." *facepalm!* The things we put up with...
I've had a lot of varied reactions from people when they find out about my condition. I go to high school, and since kids there can be so rude and arrogant, I try to keep my condidition a secret. It seems every time I tell someone, an avalanche of questions follows.
I've had people say things such as,
"I would kill myself if I had to eat like that. Like, literally."
"Uhh, yeah, I'm a bit curious as to what you eat."
"If I had that, I would just keep eating gluten and throw it all up. Big deal."
"Oh, THAT'S how you stay so thin."
"Are you still on your weird gluten free thing?"
And then they want to try my food...
"This tastes like I stuck my tongue in a helicopter propeller."
"Ew, does everything you eat taste this weird?"
But it's not all bad. I've had some really nice reactions as well...
"If you ever need a shoulder to cry on, I'm here."
"You have Celiac? Me too!" (She was my teacher and we had a nice conversation about all the local places with gluten free food).
I think the worst was actually BEFORE I was diagnosed. I was always feeling miserable and wanting to leave school early. I got called a hypochondriac many times, an attention hog, and worse. Thankfully, many apologized when I told them that I finally figured out what was wrong with me.
Hi, so my non-celiac friend and I were discussing what being poisoned feels like. Granted, if you don't have the disease, it's pretty hard to try to understand what it feels like. So, just for fun, tell how you feel when you get 'glutenated'. What does is FEEL like? A knife? Pins and needles? Dull throbbing? Just for fun
I absolutely have this problem! Although it doesn't exactly make me mad, it makes me feel sad. Why can't my body just process normal food like normal people? Why does EVERYTHING have gluten in it? And how come NO ONE knows what Celiac is???
The best thing to do is just focus on what you can eat. I'm sure almost every restaurant will have a salad or a steak or an option that's natually gluten-free.
You may want to explain your condition to your friends... in my experience, they usually give me a lot of sympathy and they like to ask me a lot of questions about it. I actually appreciate their interest, rather than them just blowing it off like it's no big deal.
Good luck to you and know that you are not alone!
Today, my family and I were discussing what we would eat for Christmas Eve dinner... we decided on chicken and artichoke pasta, and my mom said that she would try to find a gluten-free cream of chicken soup mix, since I already had my own pasta and the cream of chicken was the only other questionable ingredient.
My dad said, "No, no, no, don't go changing the recipe to make it gluten free, it doesn't taste right to me."
I don't know why, but that really hit a nerve with me. It hurt my feelings so much, and I can't explain why. Maybe it was his insensitivity, or the fact that it just reminded me that I'll never really eat 'normally' again (FYI, I'm only 17 years old.) It's really only one small alteration, I don't see what's so bad about simply buying another brand of cream of chicken.
Are you sensitive to comments like these, or do you have any similar stories or suggestions on how I could've handled the situation?
I know I'm overreacting, and that there are way worse problems I could have. But, truth be told, the holidays aren't the easiest time for a Celiac!
I know exactly how you feel... people can be so curious! And sometimes, I think people ask just because they think it's polite.
I usually just say that I can't have most baked goods and pastas... I know that there is so much more to it than that, but I also don't want to give them a health class lesson explaining it all... I get bored of it after a while
Along with explaining my condition in the shortest of terms, I get a lot of sympathy- which I don't always like because I want to feel like I'm normal, not sick! I've also had some pretty funny reactions, like "Oh so you can have cookies, but not the dough?" Uhhh, what? They then said that they thought all the gluten "baked out." *facepalm* Gotta try to understand though, most people don't even know what gluten is, I know I didn't before my diagnosis.
If you find yourself being pressed with all kinds of inquiries that you've heard 1000+ times, or find yourself being the center of attention when you don't want to be, I would just try to change the subject. I've had plenty of times when I've wanted to say, "Just STOP asking me about it, would ya??? It's not a big deal, okay?!??" It would probably feel good at the time, but I'd totally regret it and feel guilty later!
It sure is awesome! My neighbors once had my family over for dinner, and they, being aware of my Celiac, went all out to make sure everything was gluten-free!
Being a French theme, we had beef bourguignon, with which they used corn starch to thicken instead of flour, and it was DELICIOUS! We were there while she was actually cooking the dish, so I was able to discreetly keep an eye out for CC She was very thorough and I had no symptoms at all... and I'm pretty sensitive!
For dessert they served crepes (made beforehand as to not CC- they sure knew what they were doing!), and while they weren't gluten-free, the daughter brought me my very own ice cream sundae, served in a fancy dish with lots of nice toppings, and she let me read the labels on everything before I ate it! It was such a pleasant surprise that they accommodated me, and was by far the best gluten-free outside of home dining experience I've ever had!
Oh dear, I'm very sorry that happened! And unfortuantely, this proabably won't be the last time something like this happens... you know, there's the people that think it's okay to use white flour instead of wheat flour!
But sometimes we are lucky enough to come across people who understand it and are more than willing to accommodate it... it's even better if they do it right! I've had people think that I can eat cookies, but not cookie dough, because "all the gluten bakes out." *headshake*
Once again I'm sorry that happened!
And come on fellow Celiacs, this isn't a place to criticize people or make them feel bad for making an honest mistake... obviously, no one would gluten themselves on purpose. We have all been new to the diet before and probably didn't comprehend quite how serious it was at first... I know I didn't! Let's make this a place where we can vent safely and be BUILT UP by others, not admonished for all the times we are accidentally glutened.
Today we were doing a secret santa exchange for a club that I'm in. Beforehand, we all had to write on pieces of paper what our favorite candy was, etc; so the person drawing our name would have an idea of what to get us.
For mine, I specified that I'm allergic to wheat (I figured that would be easier than saying gluten, because more people know what wheat is).
I gave suggestions like Snickers and M&Ms and Hershey's dark chocolate, all of which are gluten-free.
So today I got my gift, and it was none other than Godiva Dark Chocolate, and on the package it said it contained WHEAT!! I was thinking, "Really? This person couldn't have taken the extra 5 seconds to check the label (it's clearly listed in the allergen statement)? And why couldn't they just have gotten one of the things I suggested??"
I know this sounds like an overreaction, and it probably is, I just needed to rant
I understand that it's the thought that counts, and I'm thankful they got me anything at all. I guess it's just the thoughtlessness that bothers me.
Anyone have any similar stories? The holidays can be tough with Celiac
Celiac does tend to run in families, but that doesn't always mean everyone will have it. So yes, you could essentially be the only one in your family with Celiac (I am).
Yes, gluten intolerance can be so severe, even the slightest crumbs/cross contamination can trigger symptoms.
Just be very careful with what you eat! And when in doubt, DON'T eat it... always checking labels is a hassle at first, but it soon becomes second nature. Watch out for things like 'malted barley flour' 'barley' and 'malt vinegar', as these are all glutenous.
The symptoms of Celiac have a such a far range... it's not always stomach or intestinal issues. Headaches (migraines), neuropathy, muscle/joint weakness, etc, etc; are all symptoms.
The only downside of getting a diagnosis is that you have to go back to gluten for a few weeks. I would talk to a doctor about this first, of course.
It sounds like you very well could have a gluten problem... it's amazing what a wide range of symptoms it can cause!