LuvMoosic4life

Yep

Been there... before I figured out how serious this was, I went gluten-free then ate pizza with some friends. Thick crust at that... the next day I physically and mentally felt like crap. And then I ate more pizza... because I already felt bad. Why not eat what I want, I can't feel immediately worse.

I'm sorry your friends don't get it yet. People can be totally unaware and insensitive if it doesn't involve them. I don't know how long you've been gluten-free, but I know that it got easier for me. I can now look back at how far I've come and yes I still sometimes get frustrated, it's so much easier now.

And a word of advice: When your friends see you go back and forth, you risk becoming discredited. Please take that for what it is, that is not intended to cast stones at you. But to play devil's advocate and try to see from their perspective, if you cave a lot, then they may feel like it can't be that bad if you eat what you want anyway.

Hang in there, it'll get better!!

thanks so much. and it is true about friends seeing me go back and forth. I think another reason it is so hard for them to believe me is I've always loved my bread/pasta/beer/gluteny stuff. They just dont understand why I would stop eating it all of a sudden after all these years of being a food lover ( and I still am a food lover, it doesnt have to have gluten in it!!!), but they don't see the real me when eating gluten, depressed and constantly unable to concentrate b/c I sware at times it feels like my stomach will just give up and spill, like it will go out of control. I have no control over digestive issues on gluten, gluten free gives me control of that, I dont have to worry about a class room of 30 people hearing my stomach gurgle anymore, asnd yes, I have had people in the past ask me if I was hungry or something b/c they could hear my stomach in class...not very pleasent, it makes me feel ungly! people laugh at digestive issues, but when it interferes with your life its hard to laugh about. I have always covered up disocomfort and pain, which is another reason it is so hard for people to believe me if I'm not feeling well...

I dunno if this seems wierd, I have not been diagnosed with anything yet but know I am sensitive to gluten and stay away from it. I'm sick of my friends making fun of me and saying I should just "suck it up" Obviously they dont understand the years of discomfort I've been thorugh thanks to gluten.

has anyone ever got so depressed/angry/not caring, that they purposely eat gluten??? I know it just a bad state of mind, but I have done it a few times when I'm down, thinking: why not?, I emotionally feel like crap already anyways.....I may as well just feel worse, it wont matter..... ( this is obviously depressed thinking)

this is usually already after getting gluten from somewhere while with friends, its like the gluten triggers me into depression and I just dont care, so I purposely keep eating it....

I just wish someone would understand me, its so hard being a college student with a gluten intolerance, people are just so ignorant sometimes.....I wish people would care about health....it really brings me down....

oh my watching that was slightly painful. i get why they tell people to read labels and stuff since it is partly about educating those who don't suffer from celiac but...do they have to be so cheesy? it would be really awesome to see a good and fun gluten-free cooking show on the food network. i am also a HUGE food channel fan! i wonder how someone goes about pitching the idea to the food channel bigwigs??

Im sure they could get a show on there if a celiac foundation approaches them with the idea. I agree that it should be more of an entertaining show than the lonk above. They could even have travel sections in the show where the host goes around to differant gluten free resturants or factories and picks up on cooking techniques and recipes. I think it would be great to bring about celiac awareness, I am shocked at the amount of people in this country that have never heard of gluten intolerance!!! Theres no reason why it shouldnt be as well known as something like lactose intolerance. I was going to go into culinary arts and study nutition when I was deciding on what to do for college, now I'm woshing that I stuck with that idea!!!! I would have loved to make a celiac cooking show.

I went to the store the day I heard about it. I walked down the cereal isle to see if they got the new product in and all the mangers were standing around the rice chex so I couldnt look at the box-lol

Hi. I'm new here and have looked though the site. I am trying to find out if my gluten intolerance is also Celiac disease. I have previously gone on a gluten free diet, which was successful, but I've been off it for 8yrs. I now need to return to it, but I wonder if I have Celiac disease too. I was tested 10ys ago, but I had been gluten free for a couple of years at the time. My blood test came back negative. I have many of the symtems, GI distress, depression, brian fog, listed exept weight loss. In fact, in the last 5 months I have gained 40lbs. I have been overweight all my life, but this is bad. Can you have Celiac disease and gain weight?

I'm sorry if this question has been posted before. I looked but didn't find one like it. I am trying to decide if I need to find a doctor to test me for celiac disease. Or just say it doesn't matter and just go gluten free. I am lactose intolerant, and think I have soy issues as well. Any help and/or advise is welcome.

Thank you

Britt

Hi. I dont know and answer to your queston, but this may help: I am not overwieght, but was most of my life. I have not been diagnosed yet either, but feel amazing when I am gluten free. I am a person who puts on wieght easily and has to watch what they eat. I do find that I gain wieght much faster when eating gluten foods than when eating gluten free. actually, when gluten free, I feel I can eat much more and find myself getting hungry more frequently. when eating gluten I feel like I am lacking nutrients and crave food, but at the same time the food just sits in my stomach. This doesnt happen gluten free. Many of my family members have the same symptoms as me but I know they will never get tested because they are stubborn, but pretty much my whole family is overwieght. The foods my family loves are all based around gluten. I realize it more now after going to family get togetehers where there is pot-luck, there is not one thing that is gluten free....

I have talked to other people with celiacs who say they also gain wieght on gluten....I think its differant for everyone.

I had a tingling tongue (it felt burnt as well) sticky eyes and a numb sensation around my left cheekbones. It was these events that lead me to having the blood tested for intolerances

god, I just saw this now as well, I had a burning tounge along with mouth soars a few months back!!!! they gave me no answer exept for a slightly low hemoglobin, it was bordering 11/12, but I'm normally like that! thats when I found out about gluten intolerance.

ok, I'm done wrtiting now-lol

Thank you so much MSAU22 thats extremely helpful. Did you have the pain over a period of time. Were you since diagnosed with a gluten intolerance? Did you find the pain moving around (Mine can be on my side or like now in my groin and lower back (right hand side)

hey, no prob. Yes the pain does move around. Generally I get it on my lower right hand side and sometmes into my goin and back like you mentioned. Also once and a while I get a similar pain on my left side just below my stomach, the pain tends to move over to the right side after a few hours and then pocket into my lower right side. Like I mentioned in the comment above, the one thing that really bothers me is beer (but its not the only thing) , I will wake up the next day after having a couple beers the night before- after a few hours of being awake the pain comes on and its so bad at times I get naucious and have to lay down on my stomach. The pain that I get on my right side however, is the pain that will last the longest. Sometimes it will last for days. It comes on slowly, gets really bad and then fades away, but is still constantly there for a few days or more and ver uncomfortable. There is a history of kidney stones in my family, but I never have any of the other symptoms of kidney stones when I get the pain. I have been exerimenting with going on and off gluten and I notice I only get the pain on gluten. I have not been diagnosed with anything yet as I am still trying to find a doctor I'm hoping to get in in the next month or so b/c this is driving me insane ( I also have many other symptoms on gluten)

hope this helps- I'm actually glad you posted this b/c I'v been wondering if anyone else has had this! it sucks!!!!

I forgot to mention the pain was also just below my rib cage like you described, I noticed whenever I drank beer I got the same exact pain, it would start up high and then move down....

I actually get those same pains. I went to the hospital a few years back for severe pain in my lower right abdomen right where the appendix would be. I had a slight temp and something was wacky with my blood tests showing that I had an infection of some sort. They checked me for appendicitis, but the cat scan was dark from my mid abdomen down, even after a couple hours of drinking that aweful white liquid they make you drink for the cat scan, it all sat in my stomach and never made its way down that far. They ended up subbmitting me to the hospital and were going to do surgery on me, but the next day the pain went away. They couldnt figure out what caused it, the only thing I kept thinking of was the wheat nuts I ate at my grandmas that day a few hours before I went to the ER. I remember getting gas after I ate them and tried to go to the bathroom but nothing would come out, not even gas. They never got the connection in the ER and said I may have just had bad gas or a kidney stone??? This was way before I knew of gluten intolerance. All I know is it hurt like hell when the doctors kept pressing and releasing the area that hurt. I stil got the pain off and on years after that happened, but on a gluten free diet I have no problems.....

has anyone ever gotten puffy-ness in thier face from gluten? I always thought this was a pms thing for me, but now that I'm a few days on gluten again the puffyness is back, even my lips look puffy but mostly my sinuses and I have puffy circles under my eyes... I'm starting to think this isnt even worth it just for a blood test.

I am also a runner and in college. Although I don't compete and havent been diagnosed with celiacs, I have found the the reason behind half of my running problems is a reaction to gluten. I tried going gluten free and had so much energy to run it was amazing, and I just felt so great. Before I knew gluten was the problem, my main concern was making it through a run without having to run to the bathroom. This is not good being a distance runner. I also would get horrible fatigue in my muscles. It would take a good mile before endorphines would kick in and the pain would be gone. I also never understood why I couldnt make it up a flight of stairs without it feeling like I had burning bricks in my calves and legs. I tried taking days off from running at a time figuring I was over doing myself, but it never helped, the fatgued feeling wouldnt go away, I went like this for 7 years thinking it just must be the way I am... I've always wanted to train for a marathon, but i know there would be no possible way for me to make it through w/o having to stop ten millon times to go to the bathroom. I have no problem when I'm gluten free.

my left ankle clicks everytime I walk down steps. I can also make it click by making circles with my foot. My left wrist is also the same way....

hi, thanks. I havent had tests done yet b/c I'm still trying to get in with the doctor, I'm a new pacient. I went back on gluten b/c I want to get the test done (hopefully the doc actually does it!!) and b/c I just wanted to see the reaction ( I just couldnt believe how good I felt gluten free and was wondering if it really was in my head like everyone was telling me- they were wrong!). Even if it comes back negative I'm going gluten free, this is reiculous!!

another thing, if anyone reads this....

I'm about 5 days back on gluten. I even bought bread, which I stopped buying myself a year ago because I noticed it bothered me a lot (that was before I even new about the gluten thing)

anyways, my digestive problems arent quite as bad as I thought they would be, they arent good though... the thing that is really bad is headace. Its like a migrane that wont go away and I have tons of tension in the back of my neck. I just feel fatigued all over and my tendons hurt, like its hard to stretch. I've been getting so tired after I eat that all I want to do is sleep, and yesterday I went to bed 4 hours before my regular bed time, I couldnt keep my eyes open. sound familar to anyone? I can't talk to my mom or anyone about my symptoms anymore, I'm pretty sure they are sick of it and my mom just doesnt believe me. I told her what I ate the othe day and she said "well, maybe it was the turkey" that was after I specifically told her I went back to eating gluten ahhh!!!!! I thnk she is trying to convince herself I dont have a problem, or maybe she just doesnt understand. We were in the bread isle @ the store yesterday and she said "so what kind of bread do you buy here when you are gluten free? and picked up a loaf and started reading ingredients.....I was about to scream after a month of explaining to her what gluten is....

I dont know if this is the same thing, but I always thought I had an "onion" issue. Could no longer eat them gas bloating and terrible indigestion. I was off gluten for a while and had absolutely no problem tolerating onions. Now I am back on gluten for the biopsy and everything (including onions) feel like a rock in my stomach. Seems like it takes a long time to digest. Hope that helps.

Lisa

definitly the same problem I have. onions are horrible for me on gluten.

Is it common for people with celiacs/gluten intolerances to have a problem with food sitting in the stomach longer than "normal". I'm back on gluten again after a short absence from it to see how I would react. When I was gluten free I noticed after a few days my food digested much quicker. I always had a problem digesting vegetables and though veggies were the problem for everyhing, but when I was gluten free I had no problem, no gas, no nothing. My whole life when I would eat lettuce or salad I had a problem with it seeming to stay in my stomach, I'd eat it and burp it up even 11 hours later. When I went gluten free I was wating for this to happen, but it never did, I would burp it up for maybe an hour and after that I would be fine. So today has been 3 days back on gluten. I had a salad at about 1pm it is now almost 12am and I'm still burping it up! anyone have this problem, not just salad, but with any food????? I also feel lik I have to scratch all he time, like prickly feeling- this sucks! I feel worse going back on gluten after being gluten free!

I don't know if I have celiacs. But I do know for example that if I eat something like shedded wheat cereal for breakfast, sandwich for lunch and pasta with dinner, and if I did that everyday I would be in so much discomfort I wouldn t know what to do with myself and would not be able to go in public. I do experience GI symptoms even with a small amount of gluten, say just a few pretzels or a slice of bread, but the more it builds up in my system and the greater qauntities I eat of it, the more severe my problems become and they are much more than just GI symptoms: fatigue, muscle fatigue and sinus pressure are a close second to the GI symptoms.... I dunno if this would be just gluten intolerant or signs of celiac....if anything I definitly know my body is sensitive to gluten, no doubt. If I'm constantly relying on gluten products for my meals and end up being under a lot of stress I can feel myself falling apart, its like a cycle that has been happening my whole life. And when I get sick its the same thing everytime. It takes forever to recover...and one I do recover it seems it comes back not too much longer down the road. I've also noticed whenever I do get really sick its alwas around the time of my period. Even if I'm not getting sick I often feel soarness or slight pain in my tonsels a week before my period and stuffy sinuses.....everyone always thinks I'm BS-ing them. This is not cool when you are a singer

I dont get that specific problem with the skin, but I do get very itchy and dry. Its wierd b/ci eat gluten and not too much longer later I feel random spots all over my body get itchy. its almost like the feeling of a bug biting you and you have to scratch. I dunno if this is related to gluten, but after the eliminatio diet and then going back on, the onlt time it happens is after gluten.

You could ask the doctor that cannot see you for three months to refer you to someone that can see you right away, if that does not work, then ask to talk to the physician's assistant - sometimes they will get you in when the scheduling person will not. I would not accept the three month wait period - keep looking...

I've actually done that about 5 times......my first call was a five month wait. 4 referrals later I worked myself down to three months-ugh.

thanks! I have tried the health clinic at school. They were completely unfamilar with gluten intolerance and I actually had to explian the testing process. They didnt take my problem seriously. I am under my brothers insurance, The Empire plan. My mom actually works for doctors and is going to try and do something to get me in sooner since I'm looking for a doctor in the group she works for. Funny thing I just foujd out she actually works for a family doctor who also specializes in GI. I was telling my mom acouple weeks ago about what the blood tests were called for celiacs, she said she's never seen those test done in the office, but today right after I posted this I called her and said there was a patient in today gettin his results back for celiacs....I'm crossing my fingers I can see this doc by summer. If I have to be in pain until then, I guess thats what I'll have to do........I just ate 1 half of a half of a mini bagel about 2 hours ago and I have a throbbing headace and dizziness, feels like my muscles are fatigued all of a sudden too...this will be fun (sarcasm)

So I've been in search for a primary doctor since my last one rejected me for rediculous insurance reasons (not good when you are a college student). I've been calling everywhere and cant see a GI doc until I have a primary doctor. The closest appointment I can get is in JULY!! UGGHH! So I'm in a dilema. I know that gluten bothers me and I'm reading a lot about people getting negative results and such. I feel like if I want the best results to see if my body is reacting or if I have celiacs, I should be eating gluten. I dont want to go back b/c I know how I feel when I'm on it. My problems arent quite as severe as some people's in here. I could probably put up with eating a small amount of it each day, but it would have to be at night b/c I wouldnt want to deal with bloating and discomfort all day. BUt then there is the chance that I may get a doctor that will refuse to test me, so if I go back to gluten for three months prior to july, it may be for nothing depending onthe docs decision......grrrrr...

any suggestions?

so i went to the doctor months ago. had an endoscopy and it came back negative for celiac.

bloating, constipation, etc. the whole nine yards and i also get hives when i ingest gluten. no doc is able to get me answers.

i am going to see a different doc within the same practice, as per my allergist.

when i get there, and re-tell him everything.

- chronic constipation

- bloating

- bloating after eating bagels, bread products, etc.

- had some bloodwork done by regular doc. said i had an egg allergy and wheat allergy

- since cutting gluten/wheat out of my diet, bloating has gone down

- when i ingest gluten, i get itchy hives all over my legs

do i just re-tell the other doc all of this? think he will do anything else

I'm not really in the same situation as you, but I can understand why you want answers from a doctor. In my situation I havent seen a doctor, but i narrowed my problem down to being gluten, dairy and eggs. My whole family thinks this whole thing is just in my head. At one point they actually got me thinking that also, so I went off the gluten free diet and I started feeling horrible: tendon pains, bloating, gas,headace constipation ect...ect....

I am having a problem even finding a doctor to see, the closest appointment I can get is in 3 months from now. I really dont even want to go to the doctor, although I would like to find out if I have the gene for celiacs and get tested, but my main purpose is so that I can have somthing in writing to show my family so they dont think I'm on some diet where I dont want to eat thier food. It seems that people dont believe us about health problems unless it is confirmed by a doctor. I think its rediculous b/c nobody knows our bodies better than ourselves, but yet when I tell peopl I have a gluten intolerance, they tend to laugh at me and I feel that having some proof from a doctor would make them understaand where I am coming from and maybe actually believe me!

thanks... how am I supposed to get a dr. to do a biopsy if they are convinced that I don't have it then? despite me having almost every symptom ever mentioned on every site I could find ?? guess you can see I'm pretty discouraged.

Are you seeing a GI doctor? I know there are some GI doctors that specialize in digestive diseases so they should understand how the testing works. I'm having a problem even finding a doctor in my area right now b/c I have this feeling its going to be a long process just to find out if I have celiacs or not. This is why I think the gene test would be the best. If I dont have the gene, I dont have celiacs, if I do have the gene, I have had most of the symptoms and so have family memebers, so i dont see why they wouldnt do furthur testing...

thanks! that makes sense. now that I think of it, I had always got really thirsty after eating my entire life. People always ask me how I can drink so much water with a meal, but it always seems that even after on bite of something I have to drink water. I could never unerstand how someone could sit and eat a whole meal and not touch water....or even eat a handful of pretzels-haha

So I've been gluten free for a little while now. I don't know if this is related to it, but I feel like i cant drink enough water. I normally drink plenty of water throughout the day and I am a runner so I am very well aware of the need to stay hydrated. Lately since I've been gluten free I just feel dry; my skin feels dry, my eyes get dry,my nose and throat, and I hate to say it, but even my stools are extremely dry and hard ( but I wouldnt say I'm constipated). I eat plenty of fruits and veggies and my all around diet is very good and I make sure I get enough healthy fats and oils in my diet. I rarely eat processed foods.

I don't want to say that I am dehydrated b/c my urine is typically clear thoughout the day ( with exception in the morning it is a little darker yellow, but not to the point where it would be considered dehydration.) I dont drink coffee. the only caffine I take in is through green tea, which I have 2 or 3 times a day at the most.

Has anyone ever experienced this before after going gluten free?

its funny too b/c people in my family say I look thinner, but I actaully am the same wieght. My clothes even fit me better....