Frustrated

[tsewa]

I don't know what to say. I am two months in after having a positive celiac sprue blood test and I feel like I'm not going to make it. For the first couple of weeks I really thought I was going to be okay and I have a wonderful husband who is with me every step of the way. As time goes on I realize that friends are no longer calling and we spend our nights alone in our apartment. I am 26 years old and I moved to the other side of the country to attend graduate school and enjoy having more places to go and things to do. Now I find myself in this predicament. I love to cook, I even work part time at a kitchen store so doing the gluten free thing at home is not a problem. I also love to eat out and try new foods. It was the one thing I really and truly enjoyed. Me and my husband used to talk about traveling the world and trying new cuisines. I am just so sad and I don't know how to get out of this or how to convince myself that I will still be able to do the things I hope to do. Every time I seek positive reinforcement I find blogs from people saying that they don't go out and don't travel. I feel lost. On top of this I am in the midst of a secondary illness, possibly hyperthyroidism (waiting on test results). I am so frustrated. I try very hard to be positive but it is so difficult when you feel so left out. I walk by restaurants and coffee shops and see happy people enjoying meals and drinks with friends and I feel like bursting into tears. I have tried very hard to remind myself that it could be worse but this is somehow very little comfort. I'm tired of hearing 'stay positive', especially from people who aren't going through this. My only hope is that the world will change in the next couple of years and make adjustments to menu and grocery items....and I don't mean the equivalent of one isle of food and 3-5 restaurants per city.

[GlutenWrangler]

Many people go through what you're dealing with. It takes a while to make the adjustment and accept what your life is going to be from now on. Becoming gluten-free is a lifestyle, but it's not a death sentence.

There are plenty of restaurants with gluten-free menus out there. Some of the major chains that have gluten-free menus include: Outback Steakhouse, Carrabbas and Chili's. You can also check out www.glutenfreerestaurants.org and search for your area. You can always call local restaurants to see if they accommodate people with food sensitivities.

I'm not sure about where you live, so I'm not sure about stores in your area. Do you have a Whole Foods Market in your area. They have just about everything.

Travel is definitely possible with Celiac Disease. My Mom has Celiac Disease, and she and my Dad have gone on three cruises since she was diagnosed. The ship accommodates people with food sensitivites. She was also able to find places to eat when she was off of the ship for visits to various countries. They went to South America, The Caribbean, and Alaska. I'm positive that you'd be able to find places in Europe, where Celiacs are common. If you have to, get a travel agent so that they can help you with the arrangements.

This is a tough period for you, but I promise you'll get through it. I hope the information above helps you. Take care, and good luck,

-Brian

[mysecretcurse]

I totally hear you.

I think our illness is our assignment. It's an opportunity to become stronger and to REFUSE to let anything hold us back.

I want to travel too, although I doubt you want to travel like I do, as a hitchiking homeless person lol.. eating at restaurants isn't really even an option for me unless someone else pays. But anyway, you can travel, just eat a lot of raw fruits and stuff, maybe some raw nuts. Eat when you can. Live like a bum like me! Heheh.

I'm probably not being any help, but I feel for you. I have felt the same way and spent many nights crying over this. I'm trying to be focused on healing rather than anger over my condition, anger doesn't lead anywhere good, but I know how you feel.

[Juliebove]

I don't have celiac but I do have diabetes, food allergies, and other medical problems, including being disabled. At times I have had problems with my thyroid. Not *knock wood* at the moment.

I must say I never liked to travel so not doing that is not a big deal for me. I currently dread travel unless I know exactly where we are going and have been there before. And it's a place not too far away. I've yet to travel with the insulin but I think it would be a pain because the unused pens have to be kept refrigerated.

I also can't walk very far or stand up for very long so that really limits the places I can go.

Daughter also has food allergies and not necessarily the same as mine, so that complicates things further.

And we have a cat. She can be left home for a weekend with no problems. We just leave plenty of food and water. But for longer periods of time we either have to take her with us or board her. Each has its own set of problems. If we take her with us, we can't very well stop places during the day unless it is a day that it neither too cold nor too hot. And each time we get in and out of the car, we risk losing her, unless we manage to capture her and put her back in her carrier. I must say for a cat, she is very good in the car. I used to take her all sorts of places as a kitten so she seems to enjoy it. But she can be a royal pain in a hotel or motel. If there is a small hiding place, she will find it and it is next to impossible to get her out of it when we need to leave. And we have to pack her food, bowls and litter box.

She absolutely HATES being boarded so I won't do that unless I have no other choice. I have had cat sitters for her in the past but currently don't have anyone nearby who is willing to do that.

I was first diagnosed with diabetes before the other stuff. I wasn't using insulin back then, and my diet was more varied. But I still felt left out in most social situations. I didn't know the carb count of the food (even more important now that I'm on insulin) and even if I did, it was often too high for me so I couldn't eat it. Like pizza, Chinese or Thai food. I hated going to the movies with people munching popcorn all around me that I couldn't have.

I went into hermit mode for a couple of years. It was actually easy for me to do. Husband is in the military and we were living in an area that was new to me. I didn't know anyone there and daughhter was just a baby. In a way I liked staying at home because I am prone to any illness that is going around and staying away from people spared me from getting colds, flu, etc.

But as my daughter got older, I realized that she needed to get out and make friends. So I had to go out. So what did I do? I made friends and took her out. If we were there during meal time, I generally brought a large salad for myself. In those days that was mostly what I ate. If it was a potluck, I would bring a large vegetable plate and perhaps a cheese platter. Getting carbs was not a problem for me in those days because I could eat whatever, but most likely in limited amounts.

Fast forward to a couple more moves. Daughter was diagnosed with food allergies. That was hard for me at first, adjusting. I threw out or gave away tons of food and re-did my kitchen. Muddled through it. But eventually I was happy because she got sooo much better.

Then I was diagnosed with my own food allergies. I did not balk. I immediately changed my diet. And about two weeks later I was amazed at how many of my odd symptoms disappeared. I not only felt better but was no longer getting ear and sinus infections all the time.

Now things get more complicated. Although daughter and I wanted to go to Canada, that didn't happen. It's hard to travel with husband being in the military. He can't just take any old time off. Seems something is always coming up and he is rarely able to take vacation time.

But we have made some day trips. I figure that's the best I can do. I just do the best I can. I do research ahead of time and try to find restaurants where I think we can eat. I get directions and/or maps. I try to find things to do in that area. I always pack at least some snacks just in case we can't find something we can eat. Sometimes I pack a picnic lunch.

These days, I am so limited, I just try to focus on the things I can do and not the things I can't do.

[frec]

You really can still travel. I've been to Hawaii, England, and the Galapagos since I was diagnosed. I'll admit, trying world cuisine does not work out too well! (Mostly I eat chicken, vegetables, and fruit--but hey, I don't gain weight on vacation and everyone else does!) I really wanted to eat Cornish pasties and have scones with clotted cream...but I watched my friends enjoy them, and I had real English tea, and I was SO happy to see the castles and museums and moors that even I (stomach slave that I am) didn't care that much about the food. It kind of depends where you go. England was surprisingly difficult, Hawaii was really easy, and the Galapagos was fine because I was on a cruise and I had my own waiter at every meal spoiling me to death.

Having celiac does give you a chance to meet extremely kind people everywhere you go--also some really uninformed people. My travel memories include two kind English ladies who showed me the gluten free aisle in Bristol, a Polish immigrant waitress in Cornwall who fed me the best dinner I'd had in a week, a waiter in Plymouth who also had celiac and made me feel safe, and my tour guide in Wales who told me the first word I should learn in Welsh was the word for banana, since they are the ultimate safe, portable, gluten free food and I ate them all the time.

When you are home you have a huge advantage because you can cook. This website has so many good recipes and a lot of good cooks. (I am not one of them!) Google within this forum--put in the name of a food or a product you are wondering about--and you'll get all kinds of lovely ideas. Cook up a nice gluten-free meal and invite some friends over. They are probably scared of feeding you right now and just need some ideas.

Celiac is not easy, and I am still furious that I can't have real pizza--I will never get over it--but you can do this.

[tsewa]

A positive side is that for a lot of restaurants you will get special treatment. This can be anywhere from a slightly modified dish to a conversation with the cook and a specially prepared and unique meal. I never really like it when the cook comes out to talk to me but I could see how some people might enjoy that experience. I try to be pretty careful of avoiding gluten at home because that will affect me on a daily basis but I am more willing to accept the possibility of a glutening when eating out. And that usually means eating after a movie or play or wherever a quick bathroom stop would be inconvenient.

Thanks for all of your insight. Strangely enough my doctor has told me to abandon my gluten free diet for about a month. With a million tests coming back negative and still feeling quite ill she is fearful that this sudden diet change has taken it's toll on my body both physically and mentally. We are going to approach it a bit differently a month from now by retesting and actually having a biopsy. I have been so careful not to have a trace of gluten in my diet for the last two months and I honestly haven't even begun to feel better. On a brighter note I will get one last holiday to enjoy all kinds of food and if I find that I really do have Celiac at least I will go out with a bang this time and not quit cold turkey...ease my way in in a sense. All of your comments have been helpful though...chances are I will need them in the very near future when I return to this. For now I am still watching what I eat and keeping gluten free foods in my apartment. Just slowly adding a few foods, mostly when I eat out. Blah...what an experience, don't know what to think anymore.

[zero]

A positive side is that for a lot of restaurants you will get special treatment. This can be anywhere from a slightly modified dish to a conversation with the cook and a specially prepared and unique meal. I never really like it when the cook comes out to talk to me but I could see how some people might enjoy that experience. I try to be pretty careful of avoiding gluten at home because that will affect me on a daily basis but I am more willing to accept the possibility of a glutening when eating out. And that usually means eating after a movie or play or wherever a quick bathroom stop would be inconvenient.