Feeling Left Out

[ShayFL]

Venting is good. And it is very hard. I had a pity party for the first two weeks and then I just got on with life.

Im eating burgers when I want them. And cookies. I just make them myself. Ive bought a nice nylon lunchbox and some nifty containers. I pack my snacks and meals with me if I am going out anywhere (shopping at the mall, the beach, etc.). You get used to it.

I think of all of the people who have it so much worse than me. The people who cannot tolerate ANY sunlight and must live indoors and can only come out at night. A life of seclusion. Living while everyone else sleeps. I cannot even imagine that kind of life.

Packing my own food isnt that big of a deal.

[AliB]

Y'know, I went to Tesco's today. It's a huge Tesco 'Extra'. There are miles (it seems) of aisles crammed full of gluten foods.

The gluten-free section was about 6ft wide. I reckon that was less than 1% of the whole shelf space in the store. What was on it is pretty much crap, and exorbitantly expensive.

They sold Orgran bread mix to make an 800gm loaf.

[AMQmom]

I am so sorry about your life changes and the challenges that are out there in the world...I was so MAD today that my girls have celiac. I usually try not to be mad and to remember that there are no drugs or surgeries involved with celiac. In my "funk," I found this thread. It broke my heart because I projeted your feelings onto my daughter's. My first grader went to Girl Scouts tonight and they had a pinata and juice with additives. I got a phone call from the leader asking me what my little girl could eat and most of the things (including the drink product) were not okay for her. They know her special needs and I had no notification. It really was my fault because we were out of town (that is a whole other story!) and I didn't speak to her about the meeting agenda. I could kick myself! They felt bad, too, because they forgot about her celiac and EE disease. She can not tolerate dairy, corn, grains, legumes (soy and pea included), tree nuts, carrots, and more. I just want to make all of her world as safe as her home is, but at the same time let her go out and experience life. I read your comments and almost cried. I wish that there was a way to make life easier for you AND to make others understand your needs a little better. I am so happy that you are venting and finding support. What I tell my Analise is that she is able to run and play and enjoy sweet potatoes (she loves them) and laugh, etc. Please, though, try not to forget all of the positives that you are able to do. I know that doesn't make it better. I hope that the rest of your trip goes well. I really, really feel for you. With loving thoughts, Julie

[Chrissyb]

There is no doubt that having Celias is a BIG adjustment. I have had Celicas sinces 11/07 I also have MS since 6/99. I found that I really missed nice soft PB&J, Ritz Crackers, Chocolate Cake, Powder Sugar Donuts, Pasta, and I didn't relize how much I ate things like that or just snacked on little stuff until I couldn't have it anymore. Somethings I have found a good replacement for like rice pasta and Pamulas Mix are great I love her baking and pancake mix. We have a wonderful like gluten-free bakery here in CO where I can get great bread so I can have my soft PB&J and their hambuger and hotdog buns and good also. I am the only one in the family who eats them so a loaf that cost about $5 will last my about 2 week or more if I keep it in the freezer. So far I havent found a good pizza yet or tried making my own but that is one thing I do miss. I agree the eating out is hard and I get tired of ordering salads. The hardest thing for me is learning how to read labels and tring to figure out where all the places the gluten hides. I found it in a ice cream fudge bar the other day after I ate it. My stomach was killing me so I read the box just for the heck of it and sure enough it said gluten right on it. My hubby bought them and didn't read the box. I wouldn't of thought to either after all it was ice cream. I guess it is everywherte. It will take time and change but in the end I will feel better.

I am thankfull for this site.

Chrissy

[linuxprincess]

I used to get so frustrated before I was a GFer and would ask a waiter about meat in a dish; broth, flavoring, squid ink, anything along those lines and they would say no meat just some shrimp powder. Then I was gluten-free/CF and they look at me like I'm a nut case now when I ask if there is any wheat or milk or meat in anything. I've tried emailing places ahead of time to ask about special accommodations or something available I can eat and that doesn't even work sometimes.

I've even tried the whole 'go out without me' bit and that sucks after the millionth time. I actually did go out tonight with some friends in from out of town and almost ordered a Cider. I decided to wait and see how she carried her drinks out. Sure enough all the beers were sloping over the edges into the other glasses. That is just asking for CC so I opted for h20. Good for Texas summers, but geez.

[1965kid]

Im having serious thoughts of just giving up on this diet. I have been at it for 7 months (Yes Im Celiac). My daughter went camping this weekend with friends. I was watching them pack all that food for the trip. I only saw one thing I could eat that they packed. a package of Cheetos.

I have 3 camping trips coming up. What to take. Cook for the kids, then eat a bowl of progresso soup myself. Or worse, Vieannas, or hot dogs. No bun.

And Corn! Im so sick of corn. Everything I eat seems to be made of corn. I had a gluten-free Pizza the other day and it tasted like cornbread pizza. Gross!

I am really down about this. Cant eat anywhere, and Im so tired of reading lables. After 7 months my gut is not any better. I told myself I was going to give this 2 years and if my IBS was not cured I was giving up. I dont think Im going to make it 2 years.

I may just go to Pizza Hut and get it over with. I feel no better than I did all my life, and I have had Celiac all my life Im sure. At least for 30 years out of 43. If Im not going to feel any better, why go through this? They say there is a "chance" I could get intestinal cancer one day if I dont stay on a gluten-free diet. Well, they way Im drinking over this I will die of liver failure before that. I used to be a beer drinker, now I have to drink hard liquor. And I dont do wine. Seem to be Whinning enough though.

Sorry for the rant. Im just about to go crazy thinking about these camping trips coming up.

Im frying deer steak for everyone, so I will have to buy a lot of expensive gluten-free flour, and take all my skillets. Doesnt seem worth the trouble to me. But I told everyone I would cook it for them. I wasnt thinking about how much that stupid fake flour was gonna cost. Im tempted to use real flour and just eat it.

[susieg-1]

As much as I miss eating out I have learned to embrace this opportunity to learn new gourmet gluten-free recipes. I make my own italian sausage, sushi, sesame chicken and gluten-free cheesecake...the list goes on. Luckily I love to cook and bake and have the time to do both. Am researching my own gluten-free goods business to capitalize on my passion for food!!!

[jparsick84]

Im having serious thoughts of just giving up on this diet.

Don't do it!!! You KNOW you can't do that, and we're here to support you!

I know I can't imagine what it must be like living with other people and having to cook for them while learning about this, but I read in "The Celiac Bible" that there are 2 really good options for this situation - either make everyone else in the household go gluten-free with you (expensive, and some resentful feelings might pop up) or tell them all that you can't emotionally handle cooking for them right now, so they will have to take care of themselves. Of course, if you're kids are really young you may not be able to do this either, but if they are old enough, you can help them figure their meals out. If you must continue cooking for everyone, you could try substitutes and see if they notice the difference - instead of making regular spaghetti for the family and rice spaghetti for you, just make the rice pasta for everyone - by the time they put sauce, meatballs, and Parmesan cheese on it, they probably won't even notice the difference. And once the gluten-free meal is successful, you can take pride in announcing at the end of it that it was gluten-free!

For the best gluten-free pizza I've ever had, go to www.dadsglutenfreepizza.com I couldn't really tell the difference b/w it and regular pizza. I tried Amy's rice crust one time, and I threw it out because it was so disgusting, so I know how you feel there.

I'm also wondering if you're getting accidentally glutenated and that's why you feel lousy. Most soups have flour in them, so if you want to keep eating soup, you may have to start making your own. (Egg Drop soup is actually really easy to make and filling enough for me).

If you're getting tired of reading labels, you can make a list of safe foods to take with you to the grocery store so all you have to do is check the list to see if it's safe. (Of course, you'll have to check the products periodically to make sure the formulas haven't changed).

The thing that helped me the most when I would feel like this is to avoid the gluten-free versions of old foods altogether and just eat foods that were naturally gluten-free (meat, veggies, fruits, etc). This way I didn't feel like I was depriving myself, or that the new version tasted crappy. And after a while, once you lose the taste and texture of the gluten version, the gluten-free version doesn't taste so bad.

Another thing that may help you is to seek professional help, if you can afford it. I know it sounds crazy to go to a psychiatrist for a food issue, but the fact is that you're loosing a way of life, and you need to allow yourself to grieve for it (all 5 stages). You can't reach Acceptance without going through Sadness and Anger first, you know? And they will just listen to you, which is sometimes all you need.

Don't give up, and feel free to message me if you want some more tips.

[celiackid5]

HEY everbody i just found out that i have celiac disease and i'm only 11 years old so when i see pizza or anything else i feel like crying because this disesase is for the rest of your life. So the whole point i am writing this message is that we all have to stick with it and don't think negavite or it will be nagavite.