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bumble bars are very "seedy" lol and i would only eat them if i were in the desert and it were that or a piece of gluteny pizza lol. but i've tasted the ones you're talking about and liked them! I still prefer real food to any type of bar though.

After a while you learn to adapt. I have plenty of gluten free sweets when I choose. I cook better than I did. And the reward is better health. Restaurants are getting easier because of the continued awareness.

Dinner invitations have dwingled. But then, those who don't want to inquire about my diet or ask a few questions, it may not be the place I would like to go - for friendship or food.

YES, it is a lifestyle change. YES, it sucks at times. YES, it's a pain in the butt, as well as some people. But it's an important aspect of my life. I will not spend the future years sick. I have too much to do.

just wanted to say i liked your post. it's nice to hear/see someone say that this sucks and is a big pain in the butt, instead of people saying "oh it's just bread" lol. so, thanks! =D

i want to give my apologies to you all...I was not trying to have a pity party for myself or make it seem like I was having a "problem" and get sympathy-I purely was venting my frustration that hadn't come out from work outs and wanted to see how others cope and if other people go through that head battle. I do appreciate all the positive help that has been left here, it really is a good thing to hear about how I just need to change my outlook. This whole week I have had horrible joint pain and headaches from hidden gluten, so I will be on the look out for what is causing this. Being only 21 years old and eating gluten for my whole life, it has been a tricky struggle to cut it out entirely, but I am determined to work out in order to make myself feel better. I want to give my thanks for all the support and help, I am really going to change my mind set and look into gluten free alternatives. If any body has any great gluten free recipes that they just absolutely love, I would love to hear them.

no, it's totally ok to have a pity party every once in a while, as long as it doesn't last too long. I'm 22, and in college probably like you, where sometimes i have a BIG pity party because I can't have pizza and beer or eat out with my friends. But, it helps to have one on here bc other people will support you =-D

Welcome!

I am guessing by your spelling of celiac that you are in Europe. Do you eat things that are marked gluten-free by the Codex Standards? If so, they do allow so many ppm of gluten in those products. They are not completely gluten-free. If you're eating them, you could be getting enough gluten to be causing the symptoms.

I also wanted to mention, it's easy to think you're going to die from some deadly disease while you are going through testing. Don't worry yourself. If you turn out to have something serious, then worry then. Your doctors are just trying to be thorough.

Good luck, and keep us posted with your test results. Not only will we be curious, but it's also a help to others who might be having your same problems to see the outcome of your testing.

CarlaB's right, it could be something, it could be nothing, but don't worry about it while you're being tested. It may be something unrelated to celiac. hang in there!!

Lisa,

That sounds awful--I'm so sorry this is happening to you.

This might be a longshot, but could it be an inner ear problem? Maybe check with an ENT to at least ask if your symptoms might indicate anything in that area.

I really hope you find the answer

i'm sorry you're both not feeling well. I agree, you should both go to some type of doctor instead of here, if you're gluten free, it may not be just celiac you can blame it on. Esp. if you've been gluten-free for a long time.

I have DH and the use of gluten containing feminine products will give me very painful rashes and blisters. While the absorption through the mucous membranes may not effect the gut they will produce an antibody reaction and those of us who are subject to the neuro or joint effects of gluten can have symptoms result from mucous membrane contact.

i really think you're mistaken, however, i'll drop it. i choose to not be so paranoid as i don't have DH and i don't believe i can digest things from my "hoo ha" as earlier stated lol. I do have joint problems when i digest gluten, actually from something else as well, and gluten only affects people with non dh celiac if it is DIGESTED. you may want to go back to your doctor if you are having joint pain from not ingesting gluten. just a suggestion.

I have DH and the use of gluten containing feminine products will give me very painful rashes and blisters. While the absorption through the mucous membranes may not effect the gut they will produce an antibody reaction and those of us who are subject to the neuro or joint effects of gluten can have symptoms result from mucous membrane contact.

no, you're wrong about the joint pain and that if you have no DH and it is not digested. just fyi.

don't ask people here, ask your doctor. it could be a symptom o fosmething else, more than just a charlie horse

My son is not gluten free yet, but I am going to get him tested soon as well. When he is with me he eats gluten light anyway. Not at his dads though. He loves my glutino pizza. He prefers it over gluten pizza. He is very picky and for him to tell me that some of my gluten free stuff is better than gluten items is huge! Try not to worry, you will find substitutes. I would much rather save my son from the years of unhealthiness that I have endured.

just fyi, gluten light is like drinking a light amount of rat poison every day, it doesn't really count, as a few parts per million can gluten you.

For me, it's about focusing on the positive. I feel GREAT when don't have any gluten. I am protecting myself from cancer, diabetes, and other autoimmune conditions that can be caused by ingesting gluten. I definitely went through some mourning stages. It is a life change, and a hard one. But one that is entirely for the best. You will live healthier, happier, and longer.

it's sort of like quitting smoking. if you smoke, you will get cancer and other horrible things, and die. you have the power to keep yourself healthy, and if you're a woman, if you dont' do this, you will struggle with infertility like so many have on top of all the cancer risks and other risks. Think of it as your quitting smoking, and remember what the overeaters anonymous say, at least it hink it's them, i'm sorry if it isn't, eat to live don't live to eat.

I also do not drink my shampoo. I also do not consider myself "paranoid" because I choose to use gluten safe personal care products. I look at it as "why add another hazard" when I could just use things that are safe and eliminate any question or chance of getting glutened.

I know that I have longer finger nails....lotions and such can easily get under them and hide. If I then go to eat something..hands in mouth....BAM...it's a glutening. Why risk it?

In the shower.......I don't drink the soap or shampoo....however water does get into my mouth occasionally or even the occasional stray soap bubble....BAM....a glutening. Why risk it?

To me, it just isn't worth wondering if my soap or shampoo "got me". I just use gluten free and don't have to worry about that sort of thing.

As far as mucous membranes go............I know that many medications are given where mucous membranes can absorb them. For example, if you for some reason can not take your birth control orally (like you are puking up a storm) you can insert it vaginally and it will be absorbed that way. Obviously the mucous membranes are not directly connected to our small intestines, however until there is further research on the subject saying that there is 100% no risk of any complications(unless someone can provide me with some current research) I think I will stray away from gluten containing things even around my mucous membranes. (ie..no gluten around the hoohaa )Why risk it?

This is my opinion

-Jessica

well, my gluten free living magazine says as of now they don't see how things absorbed from your skin can get into your digestive tract, and has stopped advertising gluten-free shampoo to stop the confusion, but again, personal choice but this woman should hear both sides of the story. and, you put it in a better way than i did. Lol I hear kristen chenowith say that word on ellen but i wasn't exactly sure what the propper forum word for that was =-D

I totally agree with this. In addition gluten can be absorbed by and effect mucus membranes this includes in the mouth, eyes, nose and for us ladies the 'personal areas'. Some countries will use a gluten suppository and then biopsy the rectal tissue 3 hours later to diagnose us and there is currently a form of testing that would be done by using the mucous membranes in the mouth that is in the works. In light of this and the fact that Celiac is an autoimmune reaction and thus can be systemic not only gut it is a very good thing to be 'paranoid'. I consider myself lucky to have DH and severe neuro symptoms when glutened, this became most obvious once I had cleared ALL gluten out of my personal products as well as foods. For me the reaction is obvious and far from being paranoid.

you have to digest gluten to be glutened. you are right about your nose and mouth, bc you can ingest things and they will possibly make it down to your gut. However, i strongly doubt your reproductive system is connected to your digestive system.

I saw the movie last night at midnight with ALL my friends

I thought that it was good, but not GREAT. They cut a LOT out of it, which bugged me, but still, if it's a harry potter movie, it's worth watching

so yeah, did anyone ELSE see it? if you did, did you like it?

and the BOOK comes out in 10 days :D:D i'm even MORE excited for that :D

i hated they changed some stuff as well as cut some out. I.e. where was the swamp the weasly brothers created in the hallway lol? I was looking fwd to that. But, the stuff left in, is clealry important to book 7 and the rest of the HP series. JK has control over the movies and cut out what isn't really important. The two way mirror sirius gave harry was cut out. As were some other parts. And in the book, the whole class didn't get the special punishment with the blood quills like the "i must not tell lies" harry got, right?

This may sound ignorant, but what is the purpose of watching for gluten in our personal care products like shampoo, conditioner, soap, etc....? It is because we may ingest the gluten proteins? Can someone please explain this to me.

ok, if you have DH, there is a purpose, but if you just have regular old celiac, unless you are going to ingest a product, i.e. playdough, hand lotion, hand soap, you don't really have to worry. Some people are paranoid. It is a personal choice. I don't have DH, and i don't drink my shampoo, so i dont' worry about it. but, things like lipstick and foundation that could easily get in your mouth should be looked into, i.e. some chapsticks have wheat germ oil in it. But, really, with just plain celiac, if you're not going to digest it, it doesn't matter. and now, you've opened up the floodgates bc there are two conflicting views on this one lol. And, nothing you ask on here is ignorant bc everyone on here has probably asked the same question before you! (I sure have!)

welcome to being a celiac =-D It gets easier every day, you may have slip ups in the begining, but stick with it, and ask the people on this board for help, as a whole, everyone here is very very helpful!

i'd say take some tylenol and lie down. I don't think walking around is really the best thing if your stomach hurts enough to have to take medicine. But, really, you should be asking your doctor and not a bunch of stay at home moms and other non doctors (like me).

what brand of pickles are gluten free? i haven't bought any because i thought/assumed they would have gluten in them. yum!

why would pickles have gluten in them? anyone?

I don't know anything about quitting smoking, but good luck, you're doing the right thing!!!! (i'm sure by tommorow this will be full of great advice from people who have experience with it!)

you people sure get grouchy with eachother. have a gluten-free cookie and calm down...

it's pretty tough being diagnosed in college when everything revolves around pizza, beer, and other food like that though, you can't deny it. In high school you often still live at home and not in a dorm and can have mommy make you lunch and dinner, in college, you have to eat alone, and watch everyone else scarf down pizza and turn down dinner invites.

Are you staying at the Chicken Paradise? If so, enjoy!! I can recomend the Little Aussie Bakery. EVERYTHING there is gluten free!!!

Yes! That's where I'm staying, I'm so excited, have you ever been there?

you shouldn't have a problem if you make it clear to your waiter you are ordering from the gluten-free menu and follow the "directions" on the gluten-free menu. Happy eating!

I'm quite selfish in my reason to not want socialized medicine: socialized medicine will bring everyone towards the average, but half of us have above average care, so our medical care will get worse. I've got good insurance, my doctors have been good (and the two I had that weren't, I fired - something you can't do in socialized medicine so easily, if at all), and my health care has been quite reasonable given it's complicated-ness.

What I think would help more is some accountability on the part of the average person for their health. Don't exercise regularly? Don't eat pretty darn well? Don't keep your stress levels manageable? Don't have a support system? Don't help your doctor(s) manage your health? Then it's kinda your own fault. (And, yes, I tell myself it's my own darn fault when I don't do these things and I'm not feeling well too, because it is.)

I agree with you 100 percent. There is a lack of accountability with many out there! And, i'm selfish, i like my good health insurance too. I'm sure we'll both get yelled at now for saying this though.

Ok, I realize I'm pregnant and maybe it's just the hormones, but I'm really truly depressed. I feel like our lives are so much harder than non-Celiacs. I'm tired of my "friends" turning up their noses when I bring in gluten-free food or mention going to gluten-free restaurants. I just feel like yelling "I have to eat this way all the time! You can't suck it up for one meal! Do you have any idea how lucky you are?"

I just can't seem to get used to this. I was diagnosed in November so it hasn't even been a year. I honestly feel like this is some sort of nightmare I can't manage to wake up from. Now that I am pregnant my diet is even more restricted. The only diet more restrictive than a Celiac diet is a pregnant Celiac diet.

Please someone tell me it gets easier. Thanks for listening.

Hang in there, it does get easier. I swear, when I was first diagnosed you would've thought they shot my cat I was so devastated, but now, two years later, I totally have the hang of it. I'm not saying you'll never want to jump across a table at a restaraunt and eat your friend's food, but, i promise it does get easier!

i'm entitled to an opinion, it wasn't meant in a rude way, please let it go.