I Cannot Take It Anymore!

[sandsurfgirl]

True. But IMO every time I eat something that I haven't prepared, I take a risk. I've been glutened at a PF Chang's when ordering off of the gluten-free menu. I've been glutened at my parents' house even when my mom thought she was cooking a gluten-free meal. Some of us don't wish to take the risk very often, hence the home-cooking.

Yes that's true. It's really frustrating, but at the same time if you are feeling like a prisoner to food, then maybe it's worth the risk? At least it's worth figuring out where you can eat so in an emergency you can eat out.

Let's face it. This disease sucks.

[rdunbar]

True. But IMO every time I eat something that I haven't prepared, I take a risk. I've been glutened at a PF Chang's when ordering off of the gluten-free menu. I've been glutened at my parents' house even when my mom thought she was cooking a gluten-free meal. Some of us don't wish to take the risk very often, hence the home-cooking.

I ate at PF Changs recently, after not eating at a resturant in months, and was shocked that there was nothing on the gluten-free menu that I could even eat, there is corn starch in the sauces, ect, always something, so I asked them to just cook me some chicken and spinich and bok-choy, and thats it, no salt, just those 3 ingrediants, and they accomadated me without making me feel like I'm being a freak. I have to admit that I felt like I was taking a risk, and braced myself for feeling sick, but I was fine. At least at PF Changs theres less chance of getting CCed than at some random resturant, but thier menu needs some tweaking IMO

[ravenwoodglass]

True. But IMO every time I eat something that I haven't prepared, I take a risk. I've been glutened at a PF Chang's when ordering off of the gluten-free menu. I've been glutened at my parents' house even when my mom thought she was cooking a gluten-free meal. Some of us don't wish to take the risk very often, hence the home-cooking.

I know what you mean. For some folks they do consider it worth the risk and some of them take a really long time to heal because they feel they need to. For me it really isn't worth it because my symptoms are too severe and last too darn long. I risk PF Changs maybe once a year over the last 5 or so and I have also been gotten there one of those times. It's just not worth the 3 weeks it takes me to recover. If I want to socialize I figure I can go to a place with others, eat first and drink bottled water or join them after they go eat. My small town has a lot of places that are newly advertising that they have a gluten free menu, one of them is a pizza place that makes it's own dough. Think I would risk eating there, not for a million dollars. When I think of all the stuff we have to do to cook safely even in our own homes, having worked in the restaurant business for years, I really doubt they are as knowledgeable in all these places as they think they are.

[GFinDC]

I don't eat out much either. Once in a while I will get a salad somewhere. and get olive oil and vinegar dressing. But 99% of the time I eat home cooking. Although now that it's hot those Luigi's Italian Ices are going down pretty good.

I felt pretty rough the first 2 years on the gluten-free diet. It wasn't until I totally eliminated soy that I got a lot better. Soy sucks.

Sounds like you have a good 4th of July weekend planned Kaki_Clam. I hope you enjoy it!

[kesken88]

<- Just diagnosed 2.5 weeks ago. Just moved to Australia 6 days ago. I knew no one when I got here and I still don't quite know what to do to become healthy. I'm hoping it comes easier, but from what I see above, it doesn't. Quite depressing, really.

[Tina B]

A lot of this has to do with attitude. I have been gluten free since 1990. Back when there weren't many stores carrying gluten free products. I was ordering things on the internet and they weren't very good. Once I was diagnosed I was thrilled to find out that this did not require medication, only dietary changes. I had a severe iron deficiency anemia, among other symptoms and was beginning to think I had lukemia so this was wonderful news. Now there are so many products available in regular markets, without going to specialty stores. I spent 2 weeks in Budapest, Vienna and Prague last summer and had no problem. Stick with grilled or baked in restaurants, no sauces and don't be afraid to speak up. I was at a restaurant last week and asked if something could be made without the bread topping and the waiter said "is it a gluten thing?" When I said yes, he said let me talk to the chef and came back with even more options I hadn't thought of. The Olive Garden? Please, there are so much better restaurants and many have gluten free info if you ask. If you are looking for chain restaurants just type (gluten free restaurant menus in google)

I was just in a fine dining restaurant in Philadelphia and the waiter asked if there were any dietary concerns and when I told him he brought a beautifully leather bound completely gluten free menu. A lot of the choices were on the regular menu also but they had grouped them specifically so you'd know which ones were safe. I don't really need this because I have been doing this for so long but I thought it nice for newly diagnosed. I did try one of their pasta dishes made with brown rice pasta and it was excellent. I find that more local restaurants are offering their pasta dishes with gluten-free subsituted pasta also. The key is: concentrate on all of the things you CAN eat and not what you can't.

[GFinDC]

<- Just diagnosed 2.5 weeks ago. Just moved to Australia 6 days ago. I knew no one when I got here and I still don't quite know what to do to become healthy. I'm hoping it comes easier, but from what I see above, it doesn't. Quite depressing, really.

Welcome to our wonderful celiac club Kesken88! We have a rather steep initiation rite of changing everything you are used to eating for something different and healthier. We also expect newbies to become more aware of their bodies and how they react than the average bear. As you grow in the club you may learn things about your body that you didn't want to know, (like other food intolerances) but they will help you later. And once you learn the secret handshake you can hang out in our tree house and drink gluten-free beer. You will learn secrets that many medical professionals don't know or believe in, and you can make plenty of online friends right here on this board.

So with that fairly odd welcome done, I bid you fair winds and smooth sailing.

:D

[GFinDC]

...The key is: concentrate on all of the things you CAN eat and not what you can't.

Good point Tina B. Welcome to the board too!

[kesken88]

Thanks for the warm welcomes.

Don't get me wrong, I'm trying 100% to be gluten free, going as far as setting up meetings with the kitchen staff. But i fail more often than i would like, and encounter things like orientation lunch two days in a row consisting of only sandwiches. I fully respect those who have been successfully gluten free as long as those here.

in conclusion: i still want a spaghetti and fried chicken pizza, and a pitcher of Yuengling to wash it all down.

[gf-soph]

<- Just diagnosed 2.5 weeks ago. Just moved to Australia 6 days ago. I knew no one when I got here and I still don't quite know what to do to become healthy. I'm hoping it comes easier, but from what I see above, it doesn't. Quite depressing, really.

Just take it one step at a time. Australia has extremely good labelling laws, so we have it better here than in many other countries. Join your state celiac society, they have so much information about being gluten free. Here in NSW they have celiac shopping tours of the supermarkets, as well in introductory sessions. There is a big gluten-free expo coming up in about 6 weeks, and they happen all around the country.

Also, if you can afford it, go and see a dietician - the celiac society can recommend someone specialising in the gluten-free diet. They can give you concrete guidlines about what you should be eating.

Not everyone has a long journey to get better. A lot of people do have a lot of challenges and have to work very hard, but it's not necessarily going to be the case for you. Just concentrate on learning the basics, and pay attention to how you are feeling. If you find you aren't getting better, come here for help and support, but don't worry about not getting better when you have barely started - it's way too early to tell!

[weluvgators]

I just wanted to thank everyone for sharing their frustrations. It is really helpful sometimes to know that I am not the only one feeling SO frustrated. We are recovering from two hospital admissions for my oldest child for idiopathic reasons. We remain hopeful that the idiopathic reasons are in NO way related to trace gluten consumption ("gluten free" foods . . . but they are not consumed by other family members with more classical symptoms of gluten exposure)! (where is the praying like crazy icon when you need it!!)

Anyway, I wanted to share that not feeling "better" after going gluten free is something that I relate to so well. I was FINE before I went gluten free. I was perfectly and totally FINE . . . in some sense. I had no "symptoms", and the "symptoms" (now recognized in hindsight) were tolerable and normal. It was just the way I was. And now the way I am is that I cannot tolerate those symptoms now that I know how to make them go away. Now that they are not an everyday part of normalcy for me, I struggle to "accept" them, I suppose. And when those symptoms rear their ugly head, it is really, truly distressing and consuming in some sense. When it was "normal", I had my autopilot on IGNORE, and it worked fabulously.

If it helps at all, I feed myself and three kids on a gluten free diet. We have had to eliminate processed foods and adopt extreme protocols to help us stay safe. We now have severe symptoms from exposures that "should" not bother "people like us". Yet a couple of us seem to have gluten/wheat allergy as a forerunner to our celiac condition. I have yet to identify medical providers and other patients that can relate to BOTH conditions. I feel like they must be out there, but I do not know where to find them. It does feel lonely sometimes. Yet, I feel that I must make this an experience worthy of my childrens' childhoods. I don't really know how to pull it off, but I just keep chipping away at it.

BTW - I do think that celiac is the way I am - it is an essential part of me. It is not a disease (for me - I show no identifiable signs of "disease" at this time), it is my genetic condition - the state of being *me*.

[CarolinaKip]

I've been reading all morning and yet, again my side is in really bad pain. I know what's coming next, the brain fog and headache. Thanks for all the post's here. I finally don't feel so alone. I still have moments I want to bust out crying in the middle of Trader Joe's or the other market I drive to. I'm really overwhelmed with figuring this all out. I have one friend who actually knew what Celiac was. Other people look at me like I'm crazy or that I'm being too extreme. Thanks again

[sandsurfgirl]

I've been reading all morning and yet, again my side is in really bad pain. I know what's coming next, the brain fog and headache. Thanks for all the post's here. I finally don't feel so alone. I still have moments I want to bust out crying in the middle of Trader Joe's or the other market I drive to. I'm really overwhelmed with figuring this all out. I have one friend who actually knew what Celiac was. Other people look at me like I'm crazy or that I'm being too extreme. Thanks again

The first time I went grocery shopping after diagnosis I had a major panic attack. I was in Sprouts with a full cart of groceries and I got so dizzy i could barely stand. My throat was closing up and my chest was in vise grip. I left my cart right there in line and ran out to my car. It took me 15 minutes to calm down so I could drive home safely and I was begging God to just get me home without a crash. My husband had a day off work and was home with my kids. I ran into the house and collapsed on the couch sobbing hysterically for about 40 minutes in front of my 2 and 5 year old!!!

All from a trip to Sprouts, a very celiac friendly store. A store I had shopped in a hundred times before diagnosis.

This is a HUGE change and in many ways it's like a death. You must grieve it and honor that grief. Honor your feelings and give yourself time to process them. Sooner than you think it will be your life and you won't feel bad about it.

The next grocery trip was scary because I was worried about another attack. But it didn't come. I got through it. And now I'm losing the weight I gained from my metabolism shutting down. My skin looks so clean and clear. My eyes are bright. I have a smile. And I enjoy the grocery store because this really hot blonde butcher flirts with me when I go. Something that didn't happen when i was sick, my skin sallow, and no smile.

Today I have a pool party. They made pulled pork. I called my friend last night to discuss and told her do NOT try to accomodate me. YOu have 60 people coming to your house. I asked what was in the pork and sure enough, soy sauce. So I'm making a taco salad and gluten free cake for the pot luck. I bought a cooler bag at Target that looks like a big purse. So I will pack my own food in there and sneak off to fill my plate when I'm hungry. Nobody needs to know the difference but the hostess. I will eat before I go to make sure I'm not too hungry.

I will NOT let my disease stop me from doing anything. I just won't.

[sandsurfgirl]

Costco has pretty cooler bags too. Even a zebra stripe with pink trim for the girls!

[That GF Girl]

What is the ataxia? I have had the issues of focusing the eyes and the brain fog and issues similiar? Man, it does take work but the normal docs don't have all the answers, prayers coming your way.

No, really, thanks for posting this thread

it makes me actually feel better knowing I'm not the only one who is sick of everything surrounding what I'm doing ,

ironically enough, to get better. Feeling alone just seems inevitable with this. Am I wrong??

I mean, even to the rare person who actually comes along and sincerely asks about what you are going through,or what symptoms I have I just tell them half joking "do you have three hours to sit down and listen?" because what do you tell them , where do you start? There is nobody who I have ever really told the whole picture of what my experience has been with discovering how gluten ( and casien, and now add iodine this month, weeeeee!!) has been effecting my body and my life

it seems like it never ends and I'm really only 4 months into beginning to sort it out, how to do what I need to, to get better.

my step-mother who has been so great, definatly has listened the most of anyone and been the most understanding and supportive of anyone in my life, and there is tons I haven't shared with her, just because it seems like too much. I value her so much because I have so little real heart felt moral support from anyone, because as you know most people can be crazily defensive about their precious gluten that they seem to worship, and are simply not available to be supprtive or even believe you for that matter

I feel like if I tell her the whole truth I might put her off, even though she does care, I mean she's gone out off her way to research celiac and inform herself and has taken it seriously .it's just scary to tell it,

because it sounds perposterous, the truth. you really can't almost blame them for not believing you.I'm so sick of people with that "I think you are out off your mind" look that you can read on their faces when you try your hardest to find a way to make them understand

sick of people telling you that you don't look sick when...

I'm down @25 lbs after being a buck fifty my entire adult life, can't seem to shake my DH which although better now, is still a nightmare of suffering, it's like it's just another level of hell; not quite as bad. Like being tortured every waking minute. Who wants to hear about it?

The ataxia, which I only learned the name for recently, is another great example, it's just so wierd that you are afraid to talk about it,I geuss I always tried to just put it out of my mind,episodes of stumbling around and unable to focus my eyes , the loss of balance, the "I have a vice tightening on my scull "feeling, brain fog, irritability,

all the problems related to mood disorders and behavior problems are just several volumes just by themselves, it's like you could exclude everything else and still be overwhelmed, and yet people want to act like it's all in your head, you are making it up obv

I could just go on and on , fibromyalgia on my right side, stiffness and tension in my arm, shoulder

achy hip joint and knees, inflammed gums, gas, diarrea, bloating, churning gut, twitch in the eye, it's like it's impossible to include eveything because there's always something else, then there's all the stuff you have to do to try to get better in the face of nothing but adversity, and those just seem like endless topics in themselves

so I know I'm rambling, but what I'm really trying to say is that this thread has really reminded me how valuable this board has been to me, I read it all the time, and I never want to take for granted anyone who has participated here, everyone of us is so valuable i realize, it's just amazing, thanks so much to everyone,

Sometimes I feel like I just can't take it anymore, that I'm so ready to just get better and have a normal life like other people seem to have , but then I remember, I never will, because I will always have to take a zillion precautions to avoid getting sick

that I will have to cut people out of my life who are insensitive and don't respect the fact that I've been so sick my whole life quietly, it's just maddening, and makes me want to withdraw even more into my shell, and not take any risks with someone being another loose cannon, ready to uncaringly sabotage me,or break my heart again, it's like it's so hard to trust people , or even meet new people for me because of the outrageuos BS I've had thrown in my face, getting laughed at when I'm in nothing but pain, and have never known anything but not feeling comfortable in my own skin, like being on edge at best all the time. I'm so sick of people treating you like your in the twightlight zone, because quite frankly, you are in the twightlight zone, like I am borderline autistic , without havng the excuse of being autistic , because I'm not, just gluten "sensitive", which is something people want to block out for some reason,

all this stuff I'm sick off , of course is eclipsed by how sick I am of being sick, especially the DH, which apparantly can take 2 years gluten/ everything else free, to go away. So when I think that if I get accidentaly glutened , CCed, that I have to start the clock over again, ok, after months of work I have to start over because someone washed out the dogfood bowl in the kithen sink or whatever, and all the tons of work I've done is going to be undone because of one careless person, all the label reading, question asking, phone calls , meal planning, cooking and cooking, and caution with touching things out in public, ect... All for nothing. It's enough to drive me nuts

I just want to not hurt anymore, why does it have to be so damn hard????

Sorry about the length and stream of conciousness delivery, and thanks for letting me vent too

[VioletBlue]

Ataxia is a change in neurological functions that results in coordination issues and can include speech or communcation problems. Gluten Ataxia is ataxia caused by your body's immune response to gluten.

For me that means difficulty balancing, changes in my speech and my ability to choose the right words. I still accidentally slam parts of my body into walls and furniture. Fortunately that part has gotten better over the years since I went gluten-free. It spills over into my writing often.

The gluten immune response seems to cause changes in the cerebelum in particular. It's been suggested that the symptoms are similar to those that MS patients have.

What is the ataxia? I have had the issues of focusing the eyes and the brain fog and issues similiar? Man, it does take work but the normal docs don't have all the answers, prayers coming your way.

[That GF Girl]

which biolage shampoos and cond are gluten-free? I have one and I was wondering? Am familiar with their products.

Well I just can't stop replying to this thread!

I'm really wondering why you are still sick after 10 months.

Have you gone gluten free with soaps, shampoos and make up? I had a huge improvement when I did this. You just can't keep it out of your mouth with any reliability.

Matrix Biolage has some nice shampoo and conditioners that are gluten free. Enjoy has some good ones too. Bare Minerals make up. Mac and Smashbox also have many options. Bath and Body Works haven't had gluten that I've found but I always read a new scent that I buy. H2O Plus, which I swear by is gluten free nearly all their products.

Now make up companies will NOT say they are gluten free because of lawsuits but the ones I use do not contain anything that has gluten, put it that way.

[jackay]

I know what you mean. For some folks they do consider it worth the risk and some of them take a really long time to heal because they feel they need to. For me it really isn't worth it because my symptoms are too severe and last too darn long. I risk PF Changs maybe once a year over the last 5 or so and I have also been gotten there one of those times. It's just not worth the 3 weeks it takes me to recover. If I want to socialize I figure I can go to a place with others, eat first and drink bottled water or join them after they go eat. My small town has a lot of places that are newly advertising that they have a gluten free menu, one of them is a pizza place that makes it's own dough. Think I would risk eating there, not for a million dollars. When I think of all the stuff we have to do to cook safely even in our own homes, having worked in the restaurant business for years, I really doubt they are as knowledgeable in all these places as they think they are.

I risked eating out for the first time in over a year. We were on vacation and I saw a place that offered gluten free pizza. It was at Rafferty's in the small resort town of Nisswa, MN. My husband and I were both concerned that I'd get cc but I took the plunge and ordered a pizza. This was the first gluten free pizza I ate and it was WONDERFUl!!!

I had no cc problems. They have expanded to four locations so hope they become a chain in the future. I was told their gluten free crusts are made by someone offsite.

I may have cc issues in the future if I eat there again but I will definitely give it a try if I have the opportunity.

[ravenwoodglass]

Ataxia is a change in neurological functions that results in coordination issues and can include speech or communcation problems. Gluten Ataxia is ataxia caused by your body's immune response to gluten.

For me that means difficulty balancing, changes in my speech and my ability to choose the right words. I still accidentally slam parts of my body into walls and furniture. Fortunately that part has gotten better over the years since I went gluten-free. It spills over into my writing often.

The gluten immune response seems to cause changes in the cerebelum in particular. It's been suggested that the symptoms are similar to those that MS patients have.

Yep it even causes lesions that look like MS lesions but in a different location. I am so happy to be able to walk and talk again and my memory, which was also severely affected, has even improved.

[kaki-clam]

Thanks for the warm welcomes.

Don't get me wrong, I'm trying 100% to be gluten free, going as far as setting up meetings with the kitchen staff. But i fail more often than i would like, and encounter things like orientation lunch two days in a row consisting of only sandwiches. I fully respect those who have been successfully gluten free as long as those here.

in conclusion: i still want a spaghetti and fried chicken pizza, and a pitcher of Yuengling to wash it all down.

Domino's in Australia offers Gluten Free Crust for their pizza! So you can have your Pizza and eat it too!! My friend and I have seriously considered moving to Australia due to the Gluten Free pizza at Dominos!