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I had a colonoscopy done last week following having an endoscopy and flexible sigmoidoscopy about a month ago. Before the colonoscopy the dr. told me that if i had IBD or Crohns that he would start treating me immediately or advise me what to change differently, since he previously told me gluten free. After that procedure based on the dr. reaction and our conversaton. I decided to go gluten free and have not had anything with gluten in it since Saturday. My GI dr.'s nurse called me on wednesday and left a voicemail saying my tests came back positive Celiac, she didnt say which tests (blood or biopsy) so I am just taking their word for it. I am slowly learning just how much really does have gluten in it! Now i am having very vivid dreams about eating some of my favorite foods, which of course normally contain gluten but I may be able to alter. Has anyone else had this problem, will it go away? The more vivid the dream the more I want to "cheat". I know this isnt something I can cheat on though and have tried to take a very mature approach to it. (I got rid of all the food I bought that contained gluten or that I suspected contained gluten (when in doubt dont right?) including everything on my desk at work!) Is this normal or am I crazy?

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I had a colonoscopy done last week following having an endoscopy and flexible sigmoidoscopy about a month ago. Before the colonoscopy the dr. told me that if i had IBD or Crohns that he would start treating me immediately or advise me what to change differently, since he previously told me gluten free. After that procedure based on the dr. reaction and our conversaton. I decided to go gluten free and have not had anything with gluten in it since Saturday. My GI dr.'s nurse called me on wednesday and left a voicemail saying my tests came back positive Celiac, she didnt say which tests (blood or biopsy) so I am just taking their word for it. I am slowly learning just how much really does have gluten in it! Now i am having very vivid dreams about eating some of my favorite foods, which of course normally contain gluten but I may be able to alter. Has anyone else had this problem, will it go away? The more vivid the dream the more I want to "cheat". I know this isnt something I can cheat on though and have tried to take a very mature approach to it. (I got rid of all the food I bought that contained gluten or that I suspected contained gluten (when in doubt dont right?) including everything on my desk at work!) Is this normal or am I crazy?

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I had a colonoscopy done last week following having an endoscopy and flexible sigmoidoscopy about a month ago. Before the colonoscopy the dr. told me that if i had IBD or Crohns that he would start treating me immediately or advise me what to change differently, since he previously told me gluten free. After that procedure based on the dr. reaction and our conversaton. I decided to go gluten free and have not had anything with gluten in it since Saturday. My GI dr.'s nurse called me on wednesday and left a voicemail saying my tests came back positive Celiac, she didnt say which tests (blood or biopsy) so I am just taking their word for it. I am slowly learning just how much really does have gluten in it! Now i am having very vivid dreams about eating some of my favorite foods, which of course normally contain gluten but I may be able to alter. Has anyone else had this problem, will it go away? The more vivid the dream the more I want to "cheat". I know this isnt something I can cheat on though and have tried to take a very mature approach to it. (I got rid of all the food I bought that contained gluten or that I suspected contained gluten (when in doubt dont right?) including everything on my desk at work!) Is this normal or am I crazy?

I am newly diagnosed myself and yes i want to "cheat" all the time. I hope you find some foods that satify so your dreams will go away! I hope that wanting to cheat impulse goes away. It doesn't seem fair to my spouse and kids to deny them pasta and breads just because I am weak!! Sherylj

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Welcome to the world of SPRUE! YOU ARE NOT CRAZY.

In no time, you will feel like a new person BUT it takes patience and determination and persistence. You will miss the foods.

It was very easy for me inititially because I was SO SICK in the hospital (I even know someone with sprue whose doctors took 1 year to diagnose her and she ended up having blood transfusions) so for me, OF COURSE, I wanted to feel better RIGHT AWAY. And if this diet was the solution for me GREAT. After about 2 weeks I was so FED UP with it. Cheated. GOT SUPER SICK all over again. Learned a lesson.

I still hate the diet but it could be worse. I could be off it and stuck in a hospital bed. The curious thing is when I was in college about 10 years ago, there was girl in my health class who had refractory sprue AND MALT lymphoma and back then it never ever occurred to me I could have the same problem. So strange. If I knew then what I know now I would have done the diet years ago.

Keep up with this message board. You will find it helpful.


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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Welcome to the world of SPRUE! YOU ARE NOT CRAZY.

In no time, you will feel like a new person BUT it takes patience and determination and persistence. You will miss the foods.

It was very easy for me inititially because I was SO SICK in the hospital (I even know someone with sprue whose doctors took 1 year to diagnose her and she ended up having blood transfusions) so for me, OF COURSE, I wanted to feel better RIGHT AWAY. And if this diet was the solution for me GREAT. After about 2 weeks I was so FED UP with it. Cheated. GOT SUPER SICK all over again. Learned a lesson.

I still hate the diet but it could be worse. I could be off it and stuck in a hospital bed. The curious thing is when I was in college about 10 years ago, there was girl in my health class who had refractory sprue AND MALT lymphoma and back then it never ever occurred to me I could have the same problem. So strange. If I knew then what I know now I would have done the diet years ago.

Keep up with this message board. You will find it helpful.

I have found a lot of helpful information on this board! People here are always so eager to help and offer advice, you are all awesome! I have had health problem after health problem, so you would think it would be easy for me but I have always been a big carb eater! Now I can only eat certain carbs and I am getting sick of those fast! Someone brought donuts to work today and every time I walked past it was temptation to cheat. I just know I am going to dream about baking cheesecake or something tonight.

I guess like all things with time it will pass.......

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The first two weeks I was an emotional wreck. I did not cheat, because I wanted to feel better so badly, but I cried and threw tantrums and was horribly depressed. The dreams were bad too. That all went away. The first few weeks are a little overwhelming, as you discover all the things that you can and can't have, and drive your loved ones nuts with every little discovery. It gets easier, it gets better, but its a big change, and it takes time. This is the best place you could have found for help.

Welcome.


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

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The first two weeks I was an emotional wreck. I did not cheat, because I wanted to feel better so badly, but I cried and threw tantrums and was horribly depressed. The dreams were bad too. That all went away. The first few weeks are a little overwhelming, as you discover all the things that you can and can't have, and drive your loved ones nuts with every little discovery. It gets easier, it gets better, but its a big change, and it takes time. This is the best place you could have found for help.

Welcome.

It is really nice to know I am not alone. Not so nice that others had to go through these same feelings, the last couple days I have contemplated not even getting out of bed. I want things to get better and on saturday I did cheat, I had a steak with A1 and then had some chocolate, but then decided that it cant be worth feeling like crap.

Do you ever get used to bland foods or is there a way to cook and actually make it flavorful with out gluten...I know I need to start simple I just dont know how long I can stay simple.

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Don't sell the diet short just yet, it does not necessarily have to be bland. Several mainstream barbecue sauces(Sweet Baby Ray's and Open Pit) are gluten free, as well as French's mustard, Hellman's mayo, and Heinz ketchup. LaChoy soy sauce is gluten free( they also make one with wheat in it, so be sure to double check). Kraft horseradish is also gluten-free, and Kraft products will always list wheat in the ingredients if it is used.

There are plenty of options out there, sometimes it just takes a little work to find out for sure if a product is gluten free or to find a good substitute. There is a world of info on these boards and many willing people to help and support you.

As someone who ate more cereal than Seinfeld, I also was devastated at first. Then just today I found out Fruity and Cocoa Pebbles are gluten-free! You'll be surprised at some of the things you can still enjoy.

I know it may seem overwhelming at first, but we've all been there. When you need support or help or just want to vent, this is the place to come. Welcome aboard, hope you feel better soon.


John

positive blood tests 2/07

positive endoscopy 2/07

colonoscopy with benign polyps 2/07

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It will get easier. I did post a recipe for a cheesecake with no crust. If you are interested let me know I can always post it again. Try to focus on what you can eat instead of what you can't. Good Luck Wendy

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As far as I know, A1 steak sauce is gluten free! There is tons of gluten free chocolate out there too so the treat you allowed yourself doesn't have to be something you use to "cheat" with this diet.

My girls have been gluten free for 6 months and I've recently learned they got it from me. I've been gluten free for only a few days, but I feel better than ever! My energy level has increased every day-which is such a blessing with 3 active girls.

Good luck!


Mom to 3 girls

DD1-diagnosed by allergist 10/2006

DD4 & DD9-diagnosed by Mom 01/2007

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As far as I know, A1 steak sauce is gluten free! There is tons of gluten free chocolate out there too so the treat you allowed yourself doesn't have to be something you use to "cheat" with this diet.

My girls have been gluten free for 6 months and I've recently learned they got it from me. I've been gluten free for only a few days, but I feel better than ever! My energy level has increased every day-which is such a blessing with 3 active girls.

Good luck!

Thank you all for your kind wishes! I have found tons of useful information and helpful people. I am trying to keep things simple at first and then ease myself into more complicated dishes that include some sort of flavoring. I am trying to look at the positvie side of things and think about all I can still eat. Im just in the new stages wehre I really hadnt thought about certain things but they are hitting me slowly. Like the fact that I will never have a normal wedding cake hit me last night. At first I wanted to cry, then I thought well all weddings dont have to have cake right? I can do something different, something memorable whenever it is that I choose to settle down and get married.

I am starting to feel more energetic for the most part, Im pretty sure someone at work passed the crud to me. I am also starting to feel more confident since this is making me more aware of my choices and forcing me to be healthier. Not a bad thing at all. I think I just worry too much about the choices I am making. My biggest worry is health and beauty products, I worry that I am continuing to use the wrong products and that is effecting me. I think I might just be paranoid because I want to finally feel better so badly!

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Thank you all for your kind wishes! I have found tons of useful information and helpful people. I am trying to keep things simple at first and then ease myself into more complicated dishes that include some sort of flavoring. I am trying to look at the positvie side of things and think about all I can still eat. Im just in the new stages wehre I really hadnt thought about certain things but they are hitting me slowly. Like the fact that I will never have a normal wedding cake hit me last night. At first I wanted to cry, then I thought well all weddings dont have to have cake right? I can do something different, something memorable whenever it is that I choose to settle down and get married.

I am starting to feel more energetic for the most part, Im pretty sure someone at work passed the crud to me. I am also starting to feel more confident since this is making me more aware of my choices and forcing me to be healthier. Not a bad thing at all. I think I just worry too much about the choices I am making. My biggest worry is health and beauty products, I worry that I am continuing to use the wrong products and that is effecting me. I think I might just be paranoid because I want to finally feel better so badly!

Glad to hear that you are feeling a little better, and you sound much more positive also. Keep focusing on the positives and your successes, and it will continue to get a little easier everyday. I think you hit right on the head when you said "this is making me more aware of my choices and forcing me to be healthier". As sick as I was, focusing on being healthier kept me going at the start. You sound like you are well on your way. Good luck


John

positive blood tests 2/07

positive endoscopy 2/07

colonoscopy with benign polyps 2/07

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a lot of wegmans things are gluten-free too. you can still enjoy the things you did before you where gluten-free but you just have to read lables and everything eles and be careful because sometimes it will say gluten free on it or you think it is but its not for its better to shop at a heath food store or something like that,

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