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EllieR

Finding Celiac Really Hard To Live With

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Hi

I was diagnosed with celiac a couple of months ago and I feel like im falling apart :(

My hands are covered in itchy dermatitus so bad it bleeds and no amount of creams or steriod tape seems to shift it , I cant even use regular shower gel or shampoo like everybody else ( no more trips to the body shop for me ).

I am on a very low income and seriously struggle to buy all the specialist foods. Shopping for me is a nightmare it takes hours and hours of reading the backs of packets and I seem to come away with very little food.

I feel almost scared to eat incase it makes me unwell . I dont like going to places incase i get caught short and have to find a toilet asap.

Im ment to be going to egypt in the summer but im just worrying about food out there .

I feel like celiac is ruling and ruining my life .

I guess im just feeling a bit sorry for myself and this is a good way to have a rant, I dont think people that dont suffer from this really understand what its like.

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As for the being gluten free on a budget (and having to read labels), as much as possible, avoid things with ingredient lists. Buy whole, naturally gluten free foods, and cook yourself simple meals. Fresh fruit and veggies, fresh meats, and rice/corn/beans/etc. can make a relatively inexpensive, and VERY healthy meal. You may want to spend some time browsing websites for recipes (stick with wimple) until you feel comfortable with the cooking without them.

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It gets easier. After a year and a half it comes pretty natural to me. I know what brans I like. If I pick up something new and it has a ton of ingredients I just put it back. Using the web I have found a few really good recipes that I enjoy. I have a few fast to make meals that I can do easily when I do not what to cook. I have found things that work for me when I crave gluten containing food.

I have oddly found that I need much less food then I did before. I tend to bake things rather then buy things already baked. Mine just taste better then stuff in the box. Lucky for me I do have money for food.

Traval for me can be hard. But mostly it depends on my ability to plan and pack food that I can eat. My meals may be odd but Staying home is dull. I would suggest you take a few smaller trips first in the coutry so you can figure out how to eat and come to peace with it. Talk to your traval agent though to find out the food situation. My kid had trouble back packing in eroupe when crossing a boarder because she was carrying a large jar of peanut butter and could not explain to customs what it was. she even ate some of it but had to toss it out to cross the border.

Very few people that do not suffer from it get it. My mom does and a friend of mine do so I am one of the lucky. but then they have seen me sick and seen me well and like it better when I am well. good luck

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Just stick to real food, rather than packaged garbage. There's no gluten in broccoli or lemons. Nor any in fresh chicken or pork chops. Look outside the food box. You'll feel a whole lot better for it!

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So sorry you're having such a hard time of it!

I really understand the specialized food thing - in the beginning, there is such a learning curve it feels like every spare moment is dealing with food: figuring out what's safe, how to cook it, how to afford it, how to avoid it, etc.... I was so stressed by it I wanted to cry all the time at first. So sorry it's been the same way for you!

I don't know if this will help, but there were two things that helped me with meals when I was just SO stressed, although it took me a while to figure these out: soup/stew and non-ketchup meat loaf.

For soup, I would just get whatever meat's on sale and chop it into chunks, get a bunch of veggies, and a bunch of water, maybe a few spices, and put them on to boil/simmer. Usually took a couple hours to cook down, and about 15 minutes before the end, I would put in a cup or so of an alternative grain I wanted to use (quinoa, amaranth, brown rice, etc...). It usually ended up nice. Didn't take too much thought, and while it took a bit of time, it didn't take a lot of preparation, you know? And none of the ingredients need label reading, so not so stressful.

The meat loaf was another 'no stress' food that I messed around with. I mixed ground meat of any kind with either a cooked whole grain (like cooked quinoa) or an alternative flour (like buckwheat flour). I'd add a few spices, and then some finely chopped or grated veggies as well. Egg if you can have it. And then I'd pop it in the oven at 350 F for about an hour, and there you go - a full meal, gluten free, not too expensive, and you can change up the meats and veggies to use whatever's on sale, you know?

Yeah, it got a little boring and repetitive, but it helped me out when I was feeling so miserable that trying to figure out the gluten-free foods ON TOP OF coping with being sick seemed more than I could do.

Another tip I've read is use lots of different leafy greens to make 'tortilla wraps' that have greens instead of tortilla. You can put whatever filling in it you like: pickles, boiled eggs, beans and rice, meat, and so on. Quick and easy gluten-free.

I got an insulated lunch bag that I took everywhere, with fresh veggies or fruits in it to snack on when I was out.

I messed around with 'quinoa flakes' - usually these are in the cereal section at health food stores (a company called Ancient Harvest also sells it on-line). You can use it like quick oats. If you mix it with something sweet and gooey, like honey (sometimes we cook the honey just a bit, to make it gooier), and some nuts and dried fruit, you've got yourself your own gluten-free granola bar. We lay it out on a cookie sheet, put wax paper over, and roll it out until about 1/2 inch thick before we cut it. That's very nice to take with you when you're worried about what food will be available.

Other things that helped me:

---Once I wasn't completely overwhelmed, I pretty much turned back the clock a few decades on foods and started making everything from scratch. Then I looked to other countries for ideas (places where there's not so much bread, especially. Like Asia, and Ethiopa). We get fruits and veggies, big chunks of meat or ground meat, then whole grains (on-line, you can buy in bulk and it's cheaper than at the stores, for the alternative grains). I ate NO bread or bready-products at all, no sauces I had to read the labels on, nothing. Just ditched them and ate other things, or made them from scratch. Quinoa used as a side dish instead of rice, home-made polenta, beans and rice, etc...

This lowered my grocery bills significantly, by over $50 a week.

I still had to spend time looking for recipes, but when I got 1-ingredient foods, I didn't have to spend every second reading labels. I made a couple mistakes, but it was so much less STRESS.

---Once I felt like I had things under control, that's when I started adding back in bready things. We figured out how to make our own gluten-free crackers, and biscuits and such. Haven't tried real bread yet (I've only been gluten-free for 6 months now), but I figure I'll try it when I feel like i have the energy!

---I have had to make a few things from scratch for my skin, too. The most recent edition of 'Living Without,' which you can probably still find on the racks at health food stores, had a recipe for homemade lotion that had almost no allergens, if I recall right! I've also heard pinetar soap can be really good for skin with lots of problems. I've seen it for sale on-line for about 3-4 bucks for 1 bar, but it can be used as shampoo, soap, etc.... I hear the smell is rather odd, but some people swear by that stuff.

And...just good luck. I know it feels horrible right now. But slowly it improves. When you start recognizing brands that are gluten free, and you don't have to look up gluten-free recipes because you already know them, etc.... It starts to feel less like constant work and more like 'normal.'

Hi

I was diagnosed with celiac a couple of months ago and I feel like im falling apart :(

My hands are covered in itchy dermatitus so bad it bleeds and no amount of creams or steriod tape seems to shift it , I cant even use regular shower gel or shampoo like everybody else ( no more trips to the body shop for me ).

I am on a very low income and seriously struggle to buy all the specialist foods. Shopping for me is a nightmare it takes hours and hours of reading the backs of packets and I seem to come away with very little food.

I feel almost scared to eat incase it makes me unwell . I dont like going to places incase i get caught short and have to find a toilet asap.

Im ment to be going to egypt in the summer but im just worrying about food out there .

I feel like celiac is ruling and ruining my life .

I guess im just feeling a bit sorry for myself and this is a good way to have a rant, I dont think people that dont suffer from this really understand what its like.

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Check you soaps, lotions, shampoo and creme rinse for gluten. I have to use personal care products that are gluten free or I get horrible skin problems.

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I agree that whole foods are the easiest and cheapest way to go. Plus, I never have to worry about finding somewhere to pick up fast food . . . the produce department of any grocery store is the most convenient fast food in the world!

That said, switching to whole foods can be a challenge to those who are used to eating processed foods most of the time. It takes a while, but before too long, real food actually starts to taste better than the processed stuff . . . well, maybe not always, but it gets to where the whole stuff outweighs the junk, and it feels so good!

For me, it helps to use whole foods that still taste "naughty" even though they're nice:

Potatoes are always comfort food for me -- a lifesaver and they're cheap.

REAL popcorn, made on top of the stove with canola oil . . . heaven.

Gluten-free Refried beans slathered on top of a Corn Thin (cornthins.com - just found these last week and I love them) topped with tomatoes, avocado and shredded lettuce -- addicting!

Travel: Yes, it can indeed be difficult. Egypt, wow! I've heard that it can sometimes be easier to eat gluten-free outside of the U.S. (are you from the U.S.?) because there are many places in the world where folks are more enlightened than they are here. Not sure about Egypt, though.

I hope you'll post anything you find that helps you with your travels. I'd like to hear more about how it goes for you.

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a possible resource:

http://74.125.95.132/search?q=cache:6G1fElmHgGQJ:www.touregyptforums.com/index.php%3Fshowtopic%3D1548+gluten+free+egypt&celiac disease=2&hl=en&ct=clnk&gl=us

Someone posted a card that speaks of needing gluten-free food, written in Arabic. If you click on it, it comes up larger and you can print it.

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Thank you so much for all of your replys im definatly going to try some of the recipies .. I no it will get easier I guess its just made me feel a bit low right now.

Thanks again :)

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