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    Do you have questions about celiac disease or the gluten-free diet?

mandy0221

3 Years And Still Trying

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Hi everyone I am new to the board so let me start by saying I am Amanda 23, and been diagnosed with Celiac for over 3 years now.

It is 3:15 in the morning and I was lying awake with a stomach ache, nauseated and getting cold sweats when it occured to me I am destroying my own body and don't know how to stop. Ever since I was diagnosed it has been soooo hard to stop eating the foods I am allergic too. I tried so many different gluten free foods and hated almost every single one of them. Now for the past two weeks I think my body has been sending me signals that I have to stop now before something really bad happens.

I came here because no one else understands how almost impossible it is for me to stop eating things I am allergic to. I need help but have no clue where to go. I have seen a nutritionist who just told me to start enjoying the foods (no help at all) and my family always has the temptations right in my face. I hope you all can help! :(

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Mandy--the truth is, only you can do this. Your family can not do this for you. You have to do this. No one else can make you stop eating the foods that make you sick. You are putting them in your mouth, no one else. We feed ourselves. When you decide you have had enough and you want to feel good, then you will.

Do you understand that you are slowly killing yourself? If you do not stop eating gluten, your risk of stomach cancer increases by 60% that of the average person! The longer you eat gluten, the stronger the odds are that you will develop other autoimmune diseases too, like lupus, parkinsons disease, fibromyaglia, MS, periphreal neuropathy........I am sure you do not want any of these diseases.

Mandy--I was sick for over 25 yrs and the doctors couldn't figure it out, I now have peripheral neuropathy because of those years of not knowing. All those years of vitamin and mineral deficincies caused this disease too. My feet go numb, they burn, I have inoperable carpal tunnel in both hands and wrists, my shoulders are involved. My neurologist has diagnosed peripheral neuropathy in my hands and wrists and small fiber neuropathy in the rest of my body. I get vibrations in my feet, it's like standing on a vibrating cellphone that will not stop ringing, I have cold spots that feel like a fan is blowing on me and I can't stop it, I get muscle spasms that randomly hit me throughout the day, sometimes I will walk out of my shoe and trip over it--its not fun.

I have all of this because no one knew what was wrong. You know what's wrong and are not stopping yourself. Sweetie, you have got to take care of you because no one else will. Only you can make you well. The sooner you start, the easier it will get. Your family may never make it easy, some families never do make it easy. My family has 3 celiac's and my mother still doesn't make it easy for me, simply because I have other intolerance's that the other 2 do not, so I must be nuts! Please make the effort to feel better. I'm sending you angels to speed your recovery.

Email me anytime you need--darlindeb25@aol.com put celiac in the subject line the first time--ok

Deb

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I pretty much was going to say all the things Deb said, only she really said it well. The sooner you go gluten free you will be able to rid your body a some bad things that are happening. Some of the problems you are dealing with are reversible.

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I agree with darlindeb25 and blueeyedmanda. Staying gluten free is the key to maintaining you health.

Don't try to replicate a diet containing gluten. This will require thinking outside the standard American diet. There are several threads on this website with quick and easy meals. You can use the internet to locate receipes. I put in "gluten" and the name of the meal I want to make.

Try starting with naturally gluten free foods. Any meat sauce (i.e. spegetti, chili) can be eaten of rice. Many Mexican and Asian (make sure to use wheat free soy sauce) foods are naturally gluten free. Many crockpot receipes are naturally gluten free or easily adaptable.

I am not much of a baker. The commercially made gluten free breads are not very good and expensive, in my opinion. Most of the time I simply do without baked goods. When I bake I use the mixes. I do not expect the results to taste like the real thing. I judge the results on whether I like it or not. I like Namast Foods Muffins but to me the results are closer to a cupcake than a muffin.

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I feel for you. I don't know if I could have done it as easily at 23 yrs old either. But it's hard no matter your age. It's easier to take baby steps in a diet but with this, you kind of have to plunge yourself into the icy water. Stomach pain/nausea is a better motivator than any person could ever be. But the thing to remember is you are not alone. And that person sitting next to you eating that doughnut, shouldn't be eating it either.

My one bit of advice, is when you feel you just have to have something that has gluten in it, have something else that is bad. I buy a chocolate bar when I am feeling deprived. Just a plain ol' chocolate bar.

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I feel for you. I don't know if I could have done it as easily at 23 yrs old either. But it's hard no matter your age. It's easier to take baby steps in a diet but with this, you kind of have to plunge yourself into the icy water. Stomach pain/nausea is a better motivator than any person could ever be. But the thing to remember is you are not alone. And that person sitting next to you eating that doughnut, shouldn't be eating it either.

My one bit of advice, is when you feel you just have to have something that has gluten in it, have something else that is bad. I buy a chocolate bar when I am feeling deprived. Just a plain ol' chocolate bar.

The chocolate bar is a good idea. It may seem like too much effort, Mandy, but it's totally worth it to just quit. I was 19 when I figured it out, and I had to do it all on my own. I ate rice pasta with meat sauce for two meals a day for over three months because I couldn't figure anything else but eggs out. Yeah, it sucks at first. Yeah, it's something you don't WANT to do. But don't you do other things you don't WANT to do all day? Dishes, homework, get up for work, put gas in the car, pay the electric bill, clean out the cat litter box? None of those other things can make you feel good when you do them. This can.

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thanks for all of the encouragement. My problem is not admitting to myself how much damage I am doing - I know that already. When I was first diagnosed I went about a year eating gluten free, but then it just hit me that I got tired of eating the same foods each week and of course I am picky (go figure) so when I tried to expand my menu list I got discouraged. I would spend a lot at the grocery and then end up waisting most of it because I didn't like it.

I suppose I need to just dedicate more time to looking around on the internet for recipes and just continue to try more foods.

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There's a really, really good quick flatbread recipe that takes 30 minutes start to finish--really!

http://www.glutenfreeforum.com/index.php?showtopic=39932

I add a teaspoon of yeast and use twice as much baking powder and it comes out tasting like Italian Focaccia. You can add garlic and rosemary, or top it with pesto and cheese and broil til the cheese melts. I just cut into 6 pieces, and then slice them into tops and bottoms and use them for sandwiches.

It's so good, my gluten-eating family would rather eat it than regular bread--really!

Brownies are a no-brainer--use any from-scratch brownie recipe and substitute rice flour plus a teaspoon of xanthan gum (available at most grocery stores).

Rice pasta is much more widely available now than it was 3 years ago. Look for Tinkyada brand--I can't tell the difference between that and Ye Olde Gluten Pasta.

Once you get through the first 2 weeks of withdrawal--IT'S SO EASY. And if you have that flatbread, you might not have the withdrawal (I didn't know about it when I quit gluten)! Hang in there, okay?

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Mandy,

I'm 23 years old also, and I went through what you are going through a few years back. But now I just can't eat at all. I get all of my nutrition through an IV. I haven't eaten in 6 months. So please heed my advice. You have a chance to get well. 3 years is an awful long time to avoid going gluten-free when you are a celiac. There are so many reasons to go gluten-free. The longer you stay on gluten, the higher your risk is for getting intestinal cancer. You are at risk for osteoporosis, anemia, infertility, dental enamel defects, joint and bone pain...etc. Your body is begging you to stop making it attack itself. I know that gluten-free food doesn't always compare with regular food, but it is worth getting used to. For your health's sake, do your best to make it happen. Good luck,

-Brian

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I don't really know what else I can add, other than to just encourage you to try various different gluten-free foods! I have not had much luck with baking my own homemade gluten-free bread, so I found a bakery in Canada that I order through! They ship it to my local specialty food store and I pick it up there! That is an option...as for the other things, it takes a while, but experiment with gluten-free cooking! It is a great opportunity! I mean, most people use simply one kind of flower...you have the unique opportunity to experiment with things like rice flour, potato starch flower, sorghum flour, garfava flour, tapioca flour...and each of these flours have their own, special unique way of making the foods taste better! Simply find what mix works for you and go for it!

There are a lot of us going through the same thing! I mean, I am 24 myself...I have only been diagnosed for a little over 1.5 years...but I know that the time that I had my "rebellion" against gluten-free was a time that I regret physically!

Good luck! I have some recipes that I created, email me and I will send them your way to give them a try!

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I don't have much to add, but to say please go gluten free ASAP. I finally after a decade of suffering have a confirmed wheat allergy, though in my heart I beleive I am gluten sensitive. But I am very sick. If I could go back in time and go gluten free earlier, I would. You are truly lucky to have a diagnosis so early in life before the disease destroys you.

I certainly haven't been perfect with the diet, but what has helped me starting out on the gluten-free diet is the South Beach Diet. Phase 1 and 2 are naturally gluten free. I basically ate phase 2, but I allowed myself white potatoes and white rice (both no-no-s) on South Beach. It worked for me, because it was easy to follow. And it also opened up the world of fruits and vegetables to me, which I was very bad about eating before. At first, I stuck to just ones I knew I liked, but eventually your body craves the nutrients in fruits and vegetables and your palette improves, and you really do start to enjoy them and vary your diet more. I honestly don't miss bread anymore. I do miss pasta, and will be buying some gluten free pasta to try soon.

I also agree with the chocolate bar idea. I always have M&M's and Reese's Peanut Butter Cups in the house now, and it really helps me get my chocolate fix without eating a gluten-filled candy bar, brownie or cake. It really helps.

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We all know this isn't easy and are here to help.

You will find many of us (myself included) are picky eaters and some stuff just wont appeal to us....

You will find alot of help here finding the right things for you from basic recipes to "your old favorites"

I had a hard time at first myself and know how tough it can be not to mention the learning curve is a killer.... I used my "gluten cravings" to my advantage by using what tools I had on hand to find a suitable replacement... want that chocolate chip cookie then find one thats not going to hurt you, no you may not like the first recipe or brand you try but find another life isn't the same without them!

also please remember we are all here to help so dont be afraid to ask for it.

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:) Just keep coming here and this Group will help you. A lot of ti9mes I read things and just sit back and listen They have been great for me. It is not an easy life style change. Lucky for me my family has been wonderful about it. From my sisters inlaw that went out of the way for the holiday and my wife whom just makes sure and triple checks everthing.

BEST WISHES!!

Snowball

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Hi everyone I am new to the board so let me start by saying I am Amanda 23, and been diagnosed with Celiac for over 3 years now.

It is 3:15 in the morning and I was lying awake with a stomach ache, nauseated and getting cold sweats when it occured to me I am destroying my own body and don't know how to stop. Ever since I was diagnosed it has been soooo hard to stop eating the foods I am allergic too. I tried so many different gluten free foods and hated almost every single one of them. Now for the past two weeks I think my body has been sending me signals that I have to stop now before something really bad happens.

I came here because no one else understands how almost impossible it is for me to stop eating things I am allergic to. I need help but have no clue where to go. I have seen a nutritionist who just told me to start enjoying the foods (no help at all) and my family always has the temptations right in my face. I hope you all can help! :(

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Hi everyone I am new to the board so let me start by saying I am Amanda 23, and been diagnosed with Celiac for over 3 years now.

It is 3:15 in the morning and I was lying awake with a stomach ache, nauseated and getting cold sweats when it occured to me I am destroying my own body and don't know how to stop. Ever sinc

e I was diagnosed it has been soooo hard to stop eating the foods I am allergic too. I tried so many different gluten free foods and hated almost every single one of them. Now for the past two weeks I think my body has been sending me signals that I have to stop now before something really bad happens.

I came here because no one else understands how almost impossible it is for me to stop eating things I am allergic to. I need help but have no clue where to go. I have seen a nutritionist who just told me to start enjoying the foods (no help at all) and my family always has the temptations right in my face. I hope you all can help! :(

Hi Mandy

I stumbled on to this website by accident but let me tell you,I can't wait to have the time to read it all in depth. I was diagnosed with gluten intolerance 3 years ago by my Naturopath after months of going to doctors with no result. I was going to sleep while I was driving the car, sleeping on the toilet floor at work and had absolutely NO energy at all. After 2 weeks of being gluten free I felt much better, but after being that way for a couple of years I slipped back into some careless eating habits and I'm feeling very tired again. I empathise with you because I struggle all the time with my diet. I was always a big carbo eater, lots of bread, pasta, biscuits and crackers etc and I really missed them when I couldn't have them. It has taken a while for me to realise what's wrong with me again. I'm very tired all the time, struggling at work, fuzzy thinking, tummy problems etc. It's proved to me that I'm not good at deciding for myself what's got gluten in it and what hasn't. You can't always go by the ingredients. TODAY is my day of reckoning.

Please be strong. It's taken feeling really bad again to wake me up. All I'm going to do now is think about how bad I feel when I consume gluten and how good I feel when I don't and I know that works. You have to look really hard to find the GOOD gluten free food but it's out there. I believe now that this is a bigger problem than most people realise. My husband doesn't really realise what's involved. He does the cooking and he's very good but I don't think he realises the consequences. I don't think he really believes that I have the problem because I haven't had the test down the throat but to me it's not worth going back on gluten to prove the point to him. So, I will fight on and so will you.

Please excuse any mistakes. I'm new to this forum stuff

Kindest regards

Keren

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One thing that made is extremely difficult in the beginning is that I never was much of a cook. So having to make everything from scratch was like a nightmare. But you know what? You live and learn. Now I make delicious gluten-free, soy-free, dairy-free pumpkin pies. Tender and juicy chicken. Yummy steak. And I eat healthier than ever.

The premade gluten-free food does taste horrible (most of it). So make your own. And give yourself treats, like chocolate if you can have dairy.

Stay on the diet for a while, and it won't be so hard any more. I know that doesn't help you now -- I got annoyed when I saw that initiatlly -- but it is true.

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