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

sillyyak

Difficulty In Coping Need Help

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Hi

I am looking for some support. I am newly diagnosed x 1month and am having GREAT difficulty with accepting the illness, that I cannot eat what I want to eat when I want to eat, that I am not getting better fast enough, plus that my mom was diagnosed with breast cancer and my father had a heart attack (in the middle of the doctors not knowing what my diagnose was). I am finding it very frustrating and anger provoking and to be honest I am VERY WORRIED AND ANGRY that I have celiac. Is this a death sentence disease? I feel like this disease is going to killl me.

Also wanted to know if people have any experiences like this in initially being diagnosed? Is it supposed to be a stressful time getting adjusted to the new diet. I feel like I am going to go crazy with having to become a fanatic about my food intake.

ANY advice/support/words of wisdom from experienced celiacs would be greatly appreciated.

Thanks.

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Whoa, calm down. This is not a death sentence. I understand you are angry and scared. It's normal to feel that way, but this is not a death sentence. I'm sorry to hear about your parents, this is a stressful, scary time for you. Then you learn you have celiac, that's a lot to handle. But, living gluten-free is really not that difficult. Frusterating, yes...inconvenient, yes but once you learn what is allowed and not allowed, it becomes your normal routine. Do alot of research on this forum, ask questions, look online, buy gluten-free cookbooks, etc.

My son and I were both diagnosed at the same time and although we both mourned, and felt angry at the time...it passes and you accept it and we barely think about it. It is inconvenient and eating out can be tough, but what we've got in return on this diet is worth it. We feel better, and have more energy, we don't feel like we're in a fog all the time...and the best part, no poor diarrhea. :) I don't worry that we're at any more risk of cancer than anyone else.

Please, remember we're here for you, to listen and offer advice. You are not alone with this! I hope everything works out well with your parents.

Charlene

oops I meant "no more diarrhea"

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I am looking for some support. I am newly diagnosed x 1month and am having GREAT difficulty with accepting the illness, that I cannot eat what I want to eat when I want to eat, that I am not getting better fast enough, plus that my mom was diagnosed with breast cancer and my father had a heart attack (in the middle of the doctors not knowing what my diagnose was). I am finding it very frustrating and anger provoking and to be honest I am VERY WORRIED AND ANGRY that I have celiac. Is this a death sentence disease? I feel like this disease is going to killl me.

You've come to a good place for support. There are people in any of a number of stages of going gluten-free - from still being diagnosed, to having been on the diet for decades. And my condolensces on the health troubles in your family. I hope they are both getting along ok.

First and foremost, celiac disease is absolutely not a death sentence. Not even close. Not even kinda remotely close. If you follow the gluten-free diet, strictly, you're pretty much on par, health risk wise, with everyone who doesn't have celiac disease. Not following the diet does put you at a higher risk for nutritional deficiencies (including anemia and osteoporosis), some cancers (digestive), and other autoimmune diseases - BUT following the diet is all within your power.

The gluten free diet does seem to eliminate a lot of things. Particularly things that have been cooked for us and packaged up to make it convenient. But you are in the hardest part of the diet. The learning curve is steep, and frustrating, and seems very perilous. But as you work through it (and there's no substitute to just working through it, the diet will become easier. You'll have identified all the things you have the throw out of your kitchen, and will have identified a bunch of things you've never thought of before that you can bring into your kitchen. In some areas, you'll find replacements for things you have to give up; in other areas, you'll find whole new foods that you may not have tried before.

The diet and change of lifestyle can get expensive if you're not willing to cook, so you have to think about what the tradeoff is for you between your time and your money. You can make almost anything you would want to have from gluten-free ingredients - and if you can't figure it out yourself, ask here; there are a bunch of helpful folks who can work wonders on recipes. But, this time of year in particularly, I find that soups and stews are just the ticket, and those can be made gluten free quite easily!

Remember, even before this disease, you couldn't have whatever you wanted whenever you wanted it. If you just got home from work, you couldn't just right then and there have a big steak - at the least you'd have to cook it first. If you saw a cake on sale at the store, but they had sold out, you couldn't have it at all. This is just a more pervasive reminder that there's no instant gratification, even with food. Unfortunately, a lot of the stuff around us tries to make us believe that's the case, and the contradictory signals can get overwhelming.

There's no doubt that the loss of convenience is annoying and frustrating, but don't let it make you go hungry. Bring food with you places, if you can't guarantee you'll be able to get something safe for you. Plan ahead. Keep leftovers around. It's something to adapt to, but it's something that you CAN adapt to.

I'd encourage you to read the site for a while (though of course, continue to ask questions!) as there is a wealth of tribal knowledge that can help you get into the swing of the diet.

It's a hard loss to deal with, and a tough change to accomplish, but you can do it!

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I've been gluten free for 14 months and I hardly even think about it any more, don't worry every single month it will get easier. My diet is far healthier then it was before so I'm feeling better then ever but I have found some gluten free treats that get my over the times when I want something sweet. At first it can be mind boggling but really its not hard at all.

Susan

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Hi

I am finding it very frustrating and anger provoking and to be honest I am VERY WORRIED AND ANGRY that I have celiac. Is this a death sentence disease? I feel like this disease is going to killl me.

My goodness no. Clearly your doctor(s) haven't told you anything. All you have to do to be healthy is eat gluten-free, which everyone else has explained really well to you.

I'm Sorry about your parents! That must have been hard.

Don't worry. You'll get the hang of it quickly and feel better than ever.

:D

-Jackie

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HI there,

It is hard at first but once you learn everything it will become the norm for you, just like anything else.

For some people it takes awhile to get better, so hang in there.

Make sure you check all of your shampoos, make-up, lotions, laundry detergent, etc to make sure you are getting all gluten out of your diet. Also you might want to buy 2 or 3 pots and pans that are just for you and no one else.

I think of this lifestyle as sort of like a type 2 diabetic. Nothing terrible will happen right away if you don't follow the diet but you are putting your health at risk for the future. How vigilant you are is directly correlated to how long you want to live and what quality of life you wish to have.

Most of us here have gotten so used to the diet it isn't a problem anymore. You will struggle at first but we are here to help you when you feel frustrated!

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An add on to Tiffany's remark: "If you follow the gluten-free diet, strictly, you're pretty much on par, health risk wise, with everyone who doesn't have celiac disease." I would say that if you follow a gluten free diet faithfully you will probably be healthier than you have ever been and certainly healthier than most of your family, friends and co-workers. The diet forces you into a much healthier life style - i.e. if you resist buying the gluten-free junk food which is certainly out there - at a premium price.

Take a deep breath. A lot is happening at once. Claire

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