This Sucks

[Swimmr]

We all have felt helpless at some point.

For me it's starting over again with realizing I have other intolerances besides wheat and gluten. Also with the realization I may be suffering a bit more in other areas. Back at square one with trying to read and get as much info.

Just remember we all have suffered in the same fashion and we all are alive and we all know how it feels to be ignored, picked on and told we're crazy.

Stay positive

[Swimmr]

I am lucky because I have used Colgate toothpaste all my life and when I checked on the net for the gluten-free status, it is gluten-free. I am also fortunate because I am retired, 65 and no longer trying to hold a job or catch a man I don't use makeup except for a little color on my brows if I feel the need to look great. I guess I should check Maybeline for its gluten-free status. I never did find a lipstick I could keep on for more than an hour.

I did try eating in a restaurant recently, while I was in Maine (another word for Heaven). I chose Olive Garden because their site has a gluten free menu and I had heard from other celiacs that they can eat there. I got as far as being seated before I left, almost in tears. I asked the hostess about their gluten-free menu and she was clearly uncomfortable. She gave me a handout--not a menu-- about special dietary needs and as I looked at it she bruskly announced that I should step aside if I was going to read it and let her seat the folks behind me. I am a polite person and I was mortified that she decided in a brief moment that I was holding up the couple behind me. There was nothing to the handout and I was already through with it. She seated the couple and when she came back I asked to be seated so I could see a menu. As she seated me she mumbled something to a waitress who came to me immediately. She was wonderful! However, it is clear that this particular Olive Garden has very little experience with gluten-free dining. The gluten-free items were scant and when I chose an entee it was one that wasn't served for lunch. The waitress tried to pick a few items that the chef might be able to prepare gluten-free for me but by this time I was so uncomfortable I thanked her and left. I felt like a freak! I know it is best to call ahead but I was on vacation, on my way home, and decided I really wanted some Italian food. I guess I wil try again sometime, but for now I prefer to eat at home. One high point--While in Maine I went twice to lobster pounds and ate a lobster with butter and lemon and it was fabulous. I did take a chance and had some cole slaw which was great at the first place and ho-hum at the second.

I take 19 different routine medications (12 are prescription and three are twice daily) and I found pharmacists don't have clue as to their gluten-free status. Even a close friend who is a retail pharmacist doesn't know how to get this information. I e-mailed all but one company--can't find that info for Premier Value supplements I buy at Kinney Drugs, and distributed by the Chain Drug Consortium--and everyone responded. I take as many generics as possible and I am still in the donut hole and I was pleased to find the generic companies were as nice as the big name manufacturers. All but one company hedged a little and said things like the don't include gluten in the formula but can't guarentee no CC from other sources in the plants. I think this is a legal maneuver to protect themselves from an accidental contamination. I feel 16 of the 19 meds I take are safe and I wonder how much gluten I might be ingesting from the three Premier Value tablets, aspirin, iron and calcium. I continue to try to find a way to contact this company.

Thanks for the positive replies to my previous, lengthy post. I have some beautiful 20 ounce apples and I am going to experiment making a pie with a butter and crumb (crushed Rice Chex) bottom crust and skip the top crust. I do understand the power of positive thinking and can actually employ this thinking when I am not falling apart.

The restaurant thing for me is VERY depressing. However some offer the "gluten free menu" to which they'd be better off leaving off the meals and having a statement saying, "Sorry, but you're screwed" instead.

I went to Crazy Fire Mongolian Bbq and ended up sushi instead because of how the food is prepared...lots of cross contamination. At least with sushi I know what I'm getting and know to stay away from the crab meats and any glazes or fried things...oh and kikkomon {sp} soy sauce. Grr it has wheat in it. So I bring my own called Tamari. But I didn't bring any this time and opted for the take out packages of soy sauce. They don't have wheat. But much to my unfortunate luck, their take out packs were kikkomon too. I stared at my husband and teared up and almost lost it.

Then at Joe's Crab Shack I had to get a gluten free menu. But it was a main course and in parenthesis it said, "For this meal to be gluten free you must either have fresh broccoli or white rice and ask the meat to be grilled plain!"

Ok so basically I'm paying 14 bucks for something I could have prepared at home. Thanks.

So we rarely go out and eat anymore. Hubby doesn't mind because it saves $. If we do it's Ruby Tuesday's and I just get a salad from the salad bar. I reacted from the Olive Garden and all I had was a simple chicken dinner with mushrooms and potatoes.

[Jestgar]

Ok so basically I'm paying 14 bucks for something I could have prepared at home. Thanks.

:lol:

My sentiments exactly. I'll steam my own veggies, thanks.

[boysmom]

I can't visit other people right now because I see all the food they're eating that I can't have and I just want to hit people in Wal-Mart with normal cereal and pasta in their carts.

When I was at that stage I started visualizing all the gluteny things I saw as poisoned. I pretended they had poison ivy in them, imagine ingesting poison ivy! Other posters have used dog poop! Would you really envy someone with a box of dog poop in their cart? You might secretly laugh of thinking how they would feel when they open it up! In restaurants this was very effective fro me. I needed the visualization to get over the envy.

Probably because I'm still relatively new at this, and because my response to the diet has been so very dramatic, but I am more apt to have to bite my tongue in the store to keep from running up to all the people I see with symptoms I previously suffered (bloated belly, obesity, joint and muscle aches...) and urging them to put the gluteny goodies back. I haven't really had a lot of temptation so far, because to me they all just look like a bad belly ache. I don't have to work to see them as poison.

Now maybe that all sounds good to those of you who have milder symptoms and have to work hard to keep yourself on the diet, but consider that I'm 47 and after 5 months gluten-free I feel better than I have in 20 years and have recently realized that I have more joint flexibility than I did in high school! At this point my biggest frustration is all those wasted years. My childrens' whole lives could have been very different if I'd had the strength and energy I wanted to but couldn't muster the last 20 years. (they're ages 7-17 now) I am thankful to find out now though, because at least 4 of the 5 have noticed a positive response to our diet change in themselves, so maybe all of this can spare them some suffering in the years to come.

[Swimmr]

I don't think anything you've said should upset anyone here. We all have varying levels of tolerance for change. I had gestational diabetes with my last pregnancy, and I realized through that experience that I'd rather have a tiny serving of 'real' dairy than a regular-sized serving of lite versions. To me, that stuff is not worth my trouble and some of it is just plain NASTY! lol *Maybe* after several months (years?) with no dairy at all I could learn to accept some of the alternatives. I can understand your frustration with gluten-free breads. I'm still searching for acceptable alternatives myself. I would suggest simply staying the course (because, in the case of gluten, eating a tiny amount is NOT a safe option) and maybe eventually your lack of those items in your diet will reduce your sensitivity to the texture issues? If not, being healthy is worth the sacrifice, in spite of the frustration.

I wish you years of health and joy and eventually, contentment in this new life. ((( hugs )))

Perhaps if we were raised on these alternatives we would have never become accustomed to the way REAL bread or REAL pie crusts taste. If given a sample of real wheat bread after 20 some or more years of being used to gluten free bread, we'd probably say, "Omg, this is horrible..."

Or...maybe not.

I just keep thinking that one day I'll get used to the way gluten free baked goods taste. I find that gluten free cookies (betty crocker) taste better when they are NOT right out the oven. But that is the whole reason I like baking them. So it's one thing or another.

HOWEVER, noone in my office can tell my cakes are gluten free. Betty Crocker brownies and Betty Crocker chocolate cake mix is (I swear on my own health) freakin AMAZING. I gave away some brownies a couple weeks ago and they asked me, "I thought you can't have these!?!" and I said, "They're gluten free, yes I can" The response was, "OMG these are the best I've ever had...!" My next feat is going to be sausage balls. They will eat them and they will LIKE them

Namaste spice cake mix...can be made into carrot cake by adding carrot shreds and raisins and pecans if you can have them. I make my own cream cheese icing. Everyone but one guy LOVES it. Thats only because he's a complete pompous a-hole who gets his kicks off of trying to make everyone as miserable as he is.

When I was at that stage I started visualizing all the gluteny things I saw as poisoned. I pretended they had poison ivy in them, imagine ingesting poison ivy! Other posters have used dog poop! Would you really envy someone with a box of dog poop in their cart? You might secretly laugh of thinking how they would feel when they open it up! In restaurants this was very effective fro me. I needed the visualization to get over the envy.

I cant do this...because I know the truth. It's like setting my clocks 5 minutes ahead to avoid procrastinating...but then I realize I have 5 more minutes. Reverse psychology has never worked.

Look at a donut with chocolate glaze and think, "It's dog poop, stinky smelly......*licks lips*.....delicious, creamy, chocolatey...so heavenly...sob, it ain't dog poop!"

When I used to fail at saying no to the weekly friday donuts the boss brings in, I realize now that I would sneak one when I didn't think anyone was looking. But when someone was watching me, I would open the box, look, smell and then walk back to my desk in disgust. That is horrible that I felt I had to sneak a donut as if my co-workers were going to slap some hand-cuffs on me if I got caught.

I can't visit other people right now because I see all the food they're eating that I can't have and I just want to hit people in Wal-Mart with normal cereal and pasta in their carts.

LOL I do the same thing. But then I try to tell myself that at least out of every seven people I pass, at least one has celiac or an intolerance and think, "Well at least I'm two steps further than they are!"

People at work say they'd rather suffer than not eat the glutenous things. So ignorant. THOSE are the one's I'd like to smack. They're being ignorant for NO reason.

Sorry for hijacking the thread

[Imanistj]

OK. The original post opined that living with celiac and the gluten-free diet sucks. I poured my heart out complaining about how awflu I find it. Others have stated that they feel lucky they don't have a worse cross to bear. Some responses seem to indicate the writers' are more mellow and can accept the lifestyle because it is necessary. It appears that those who feel really better on a gluten-free diet find motivation in that. I don't have the classic symptoms and I don't feel any better--YET, I hope. Are there any members who were as devastated as the most unhappy members here but who eventually calmed down and now just roll with the punches? There have been some terrible losses in my life that no longer tear me apart, at least most of the time.

[Swimmr]

Are there any members who were as devastated as the most unhappy members here but who eventually calmed down and now just roll with the punches? There have been some terrible losses in my life that no longer tear me apart, at least most of the time.

Yes. I blew up at work the day my mom texted me to say that I could no longer eat a specific item and right now I can't remember. Broke down in tears in the bathroom.

Now when I find new info I just take it for what it's worth. My mom and I were just discussing this the last time I went to visit her a few weeks ago.

All that we learn makes us (in the long run) healthier.

[sunnybabi1986]

Ever notice how that Pillsbury dough boy is all fat and bloated?

Hahaha! Makes more sense now! This made my day...thank you!

[Harley0000]

Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.

HI

I am very new to this. I was just diagnosed less than a week ago and OMG!! I am sooo depressed. My way of life has changed so drastically. I know it could be a lot worse but that does not make me feel any better!! Wanna b****h to each other about this? LOL

[sunnybabi1986]

So I moped most of yesterday and cried a lot last night because I was craving spaghettios so badly and my son was eating them for dinner. But then my mom called me and was telling me about her friend. Her friend has rhuemetoid arthritis and is in severe pain everyday. The meds that she is on are killing her liver, so they're switching her to another medicine that costs $1500/month, and she can barely afford them. Yeah, crazy. So I felt pretty foolish after that. I mean, I'm not in severe pain everyday and I'm not paying $1500/month to try to just manage my condition.

At times it may feel like my world is coming down around me, but in reality, I'm not nearly in the predicament that I imagine I'm in most of the time. The crazy thing is, my mom's friend who has arthritis so badly doesn't even complain about it, yet she suffers everyday. That kind of makes me feel like maybe I should look at this from a different perspective. Yeah, this definitely sucks, but it could be worse. I know that saying is so worn out and doesn't mean much to some people, but when you know someone who does have it worse, it makes sense.

BTW, I had Dinty Moore Beef Stew tonight and it was AMAZINGLY awesome!! I will be stocking up! Such a great comfort food!

[boysmom]

Are there any members who were as devastated as the most unhappy members here but who eventually calmed down and now just roll with the punches?

When I learned that I had to eat gluten-free it had less of an impact on me because I had previously had gestational diabetes and had learned, through that and other dietary changes we'd made to try to eat healthier (like buying a grinder so I could make my own freshly ground, whole wheat bread ), some coping strategies that worked *for me*. Each of us is motivated by different things, has different priorities in life, and is at a different stage of life, so what works for one may or may not work for the next. The year before that pregnancy my family moved to a new state 7 hours away from extended family and where we'd always lived. That year, going home for Thanksgiving and seeing all the foods we'd always enjoyed as part of our holiday traditions and knowing I would have to skip most of them and wouldn't be back home to get any more until at least summer, I cried. Who knew my favorite pie (sugar cream pie) was a strictly Hoosier treat???

I can't predict what will help you get through this period of adjustment, but just remember that it IS a period of adjustment. I won't promise you'll get to the place you won't miss some of the things you've enjoyed in the past, but there are VERY few things you can't either duplicate in a gluten-free form or find some other kind of replacement for. In time you can come to a place where you will be able to remember the old things with fond memories, but not an overwhelming craving. So talk out your frustrations, hear from others who are there now or have been before, but try not to let it overwhelm you or depress you. It will get better, I promise, if you stick it out.

[soulcurrent]

So I moped most of yesterday and cried a lot last night because I was craving spaghettios so badly and my son was eating them for dinner.

I think I saw gluten free spaghettios at Whole Foods.

[soulcurrent]

this sucks.

If you weren't aware, there's a gluten free restaurant in Cedar Park. I haven't been yet but the menu shows a lot of comfort-type foods.

Open Original Shared Link

[Hummingbird4]

I am a good cook and I have tried many recipes or mixes that other celiacs have kindly suggested or recommended. Still, nothing meets my expectations. I want hot dogs and burgers on nice soft, white rolls. I want sandwich filling on soft white bread or, God forbid, on whole wheat bread.

Nancy

I'll have a grilled cheese sandwich--no bread.

Schar white bread is really, truly good. I haven't found it in any local stores but you can order it from Gluten Free Mall or some other sites. It's expensive (of course) and the slices are small, but they don't have that icky rice flour taste. That reminds me of the time I was on a vacation and there was an In-n-Out Burger near our hotel. I decided to buy some gluten-free hamburger buns at Whole Foods so that I could have a bun for my burger. I should have known when I *hoisted* the bag of 6 rolls from the shelf, to put them back. They were like bricks, and so dry. Yuck, yuck, yuck. The burger was better without that bun! I know Schar makes rolls too, but like the bread slices, they are small. Good to keep on hand in your freezer, though.

[angieInCA]

Are there any members who were as devastated as the most unhappy members here but who eventually calmed down and now just roll with the punches?

My earlier post talked of changing ones focus to help cope with the loss of gluten and favorite foods. This was a must for me.

My first trip to the grocery after my diagnosis (which was fastly approaching the 2 hour mark) ended with me having a total hysterical crying fit in the middle of the store and me walking away from my cart with just 3 things in it and leaving the store in a complete shattered mess that left me in a deep depression for 3 days.

I am a self-confessed control freak and this was something that I felt was completely out of my control! How dare Celiac Disease interfere into my life!!!!!!!! That is when I went to the Doctor looking for help with anxiety and depression and she suggested I take back control by changing my focus. Did it happen over night? NOT! But over a few weeks I realized being the control freak that I am that I could and did have control over this disease. I had to come to terms with the idea that Gluten was just a thing I had to live without and not let the old cravings and familiar tastes lure me into a place I didn't need to be. The mind and body is a powerful thing and when addicted it will make you want the one thing it craves. Ask anyone who has given up legal drugs like cigerettes or alcohol.

I confess I started feeling a bit better at the 4 week mark and really started to realize a hugh difference at the 8 week mark but it really didn't hit home till about the 6 month mark that I was feeling better than I had ever remembered feeling in my life. I realized my "you will be wheelchair bound within 3 years" diagnosis wasn't going to materialize. I started thanking God every day that my Celiac Disease wasn't Cancer, yet! BTW, I just hit my one year mark on 10/28.

It's damn hard! No one is saying it isn't. But with time it will get easier. For some it's a few weeks, for others it can take months.

As for food and baked goods not tasting like they are supposed to, I was an avid baker. I made amazing Breads, Cakes and Cookies and loved doing it. Does my baking taste the same now? No! But it is excellent and it tastes amazing but it does not taste like it's gluten counterpart. It just tastes different but it's still good. Actually my biscuits made with Pamela's mix is much better than my gluten biscuits ever were.

Now, with that said, I am off to bake an amazing Gluten free Carrot cake complete with Cream cheese frosting.

[angieInCA]

One thing I want to add. I just hit my 1 year mark of being Gluten Free and I still have days where I find myself trying to navigate through this whole process. But I expect it will be that way the rest of my life. I just keep telling myself everytime I get glutened or I have a bad day that this will get better. And I continue to learn something new everyday, some days it's an adventure and some days it's just frustrating!

[positivenrgfairy]

HI

I am very new to this. I was just diagnosed less than a week ago and OMG!! I am sooo depressed. My way of life has changed so drastically. I know it could be a lot worse but that does not make me feel any better!! Wanna b****h to each other about this? LOL

I tried sending you a message to say hello but it didn't go though. so just saying whats up!

[Harley0000]

I tried sending you a message to say hello but it didn't go though. so just saying whats up!

HELLO!

I am glad for the reply. I am new to this forum and wasnt sure how to post a message so I just did a new one. I am so grateful for this site. I never dreamed there were so many others who feel exactly the way I do. I wonder if there is a way to just email? If you know of any "hidden tricks", pleas share

I am a 40 year old married female from NY and I am just desperate for "how to deal with this tricks" for this newly found nightmare I seem to be in. Whine whine...LOL.... sorry!!

Nancy

[positivenrgfairy]

I was hit with an accidental gluten bomb earlier in the week, which was messing with my brain chemistry and hormones, so I was in a particularly bad place when I made this post.

I also said that my husband doesn't understand, but just to be clear - he can't understand, bc he is not going through it, but he IS being incredibly supportive. I didn't mean to make it sound bad.

It's not bread or pasta that I'm having trouble letting go of, it's all the hidden ingredients, and its really frustrating. eating gluten free products is like being slapped in the face.

Luckily I live in a really health conscious city and there are some good options for me.

After reading all these replies I feel NORMAL for the first time in days.

I know it is ebb and flow, and some days I will feel sorry for myself and others I will feel strong and healthy. The small amount of time I have spent on this board has already helped tremendously.

but at least I know that if I need somewhere to vent to people who DO truly understand, I have it.

[positivenrgfairy]

HELLO!

I am glad for the reply. I am new to this forum and wasnt sure how to post a message so I just did a new one. I am so grateful for this site. I never dreamed there were so many others who feel exactly the way I do. I wonder if there is a way to just email? If you know of any "hidden tricks", pleas share

I am a 40 year old married female from NY and I am just desperate for "how to deal with this tricks" for this newly found nightmare I seem to be in. Whine whine...LOL.... sorry!!

Nancy

Hi Nancy. There is a way to email. you can send me a private message through this forum or email me at positivenrgfairy@gmail.com

-Laura

[Harley0000]

Hi Nancy. There is a way to email. you can send me a private message through this forum or email me at positivenrgfairy@gmail.com

-Laura

HI Laura

I sent you an email... so please let me know if you get it.

I related to the comment about your husband not understanding. My husband is wonderful and very supportive but his hands are tied because he cant relate and I know when he is done consoling me when I am in one of my crappy moods.... he sneaks off and eats a donut...GRRRRRR LOL