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Celiac Disease. Me?


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15 replies to this topic

#1 Joshiesmom

 
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Posted 30 December 2011 - 11:41 AM

Good afternoon everyone! I found out last night that I have Celiac Disease. Last night and this morning I was literally laughing about it. It seemed to be a joke to me, It didn't really hit me untill my husband left for work and my son is at camp I dont usually have any quiet time. As soon as I was alone I started crying. I don't understand this I have felt sick for so long and now a miracle has happened I found out why. Although I found out why, why am I so upset. Please tell me if I am responding to the news normally I feel like the bottom just dropped out from under me. I don't even know where to start! Please someone give me some advice words of encouragement or something. Because right now I really wish for someone to tell me it won't be so bad. I hear Gluten Free diet and I automatically think never having bread again or cereal or pasta and those are staples in my diet how do you live without these things... I though whole wheat and grains were good for you now I find out that they are extremely bad for me. The doctor is doing a Biopsy does this mean I may have cancer. Oh my God, I don't know what to do with this news!
Thanks to anyone who finds this and responds.

Tina
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#2 Jestgar

 
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Posted 30 December 2011 - 12:01 PM

Not only is it not so bad, eventually you will realize that it's awesome! No more being sick and not knowing why. You can be obnoxiously righteous about your healthy eating habits in front of people eating junk food. It's your chance to be "high maintenance" at restaurants. You get to learn to cook new foods. All kinds of good things. :) :)

And yes, you are reacting normally. This signals a huge change in your life, and change is always both scary and exciting. Hang out on the board for a while, read other people's posts, and wait for some responses to yours.

And welcome. :)
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#3 Joshiesmom

 
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Posted 30 December 2011 - 12:04 PM

Good afternoon everyone! I found out last night that I have Celiac Disease. Last night and this morning I was literally laughing about it. It seemed to be a joke to me, It didn't really hit me untill my husband left for work and my son is at camp I dont usually have any quiet time. As soon as I was alone I started crying. I don't understand this I have felt sick for so long and now a miracle has happened I found out why. Although I found out why, why am I so upset. Please tell me if I am responding to the news normally I feel like the bottom just dropped out from under me. I don't even know where to start! Please someone give me some advice words of encouragement or something. Because right now I really wish for someone to tell me it won't be so bad. I hear Gluten Free diet and I automatically think never having bread again or cereal or pasta and those are staples in my diet how do you live without these things... I though whole wheat and grains were good for you now I find out that they are extremely bad for me. The doctor is doing a Biopsy does this mean I may have cancer. Oh my God, I don't know what to do with this news!
Thanks to anyone who finds this and responds.

Tina


Thank you so much for the encouragement and kind words. I really appreciate it! I plan on being on this blog alot! :)
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#4 spryng

 
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Posted 30 December 2011 - 12:11 PM

Tina the best news is you are NOT alone! I've only been gluten free for 5 days now, still very very new to this as well and to wrap my head around but yes I do know you won't have to give up your favorite staples of bread, pasta etc, you'll just find new gluten free versions of them and a biopsy does not mean you have cancer! It just means they want to see how bad celiac disease has damaged the villi of your small intestine, it's a pretty standard test for celiac disease. I would definitely recommend reading lots of posts in this forum and maybe even checking out a few books from your libary etc, I found Living Gluten Free for dummies to be extremely informative, Wheat Belly was especially good at getting at the science behind wheat and how today's wheat is more like poison in our bodies anyway and maybe even getting a couple cookbooks for gluten free meals etc. Read up on the disease and educate yourself and you'll be less overwhelmed and once you start your gluten free diet you are going to feel sooo much better which will put things back into perspective as well. I know some of the other members here who have been diagnosed celiac a lot longer than me will give you some great advice too. But I did want to say welcome to the forum and please ask questions and utitlize it, there is so many people here who can help you :)
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Spryng

mother to 4 great kids, 32 years old

Gluten free since Nov 2012

#5 samie

 
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Posted 30 December 2011 - 12:26 PM

Yes its normal to feel that way but it will make you feel better. There are gluten-free pasta and breads. Most things can be made gluten-free. The biopsy from the endoscope checks for different things and celiac damaged. Though if you are getting an endoscope they say you should stay eating gluten till you have it done because it can cause false negitives.
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#6 bumblebee_carnival

 
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Posted 30 December 2011 - 12:48 PM

It will be fine, I swear! There is a whole world of gluten free foods out there. The biopsy doesn't mean you have cancer or that they are even looking for it. A lot of doctors still make a final diagnosis of celiac with a biopsy.

It's a big adjustment, but there are tons of people here who are doing it successfully every day. Your will function so much both physically and mentally when you remove the gluten from your diet. You can do it!
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#7 mbrookes

 
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Posted 30 December 2011 - 12:52 PM

I have been gluten free for 4 years next week. At first it is very hard. All you can see will be the things you can't have. With time you will learn to concentrate on the great things you CAN have.

Let me tell you, I am a foodie! I love to cook and I love to eat good food. The Celiac diagnosis had me railing and crying at first. Then OMG! I realized I felt sooo good. I could quit locating the bathroom in every store I entered. Truthfully, I do still get upset occasionally when everyone else is scarfing down something forbidden to me. That is very normal.

Do stay with us here. We can help you transition from "How am I going to live this way?" to "No big deal." Don't hesitate to ask us here for product brand names, recipes, eating out strategies or any of the other thousand qestions you will have. Help is as near as your computer.

Good luck to you. You have taken the first step toward health. Your attitude will make or break you in your quest for living happily without gluten.
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#8 Kansas

 
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Posted 30 December 2011 - 01:40 PM

Like other posters have written, it is tough at first. Super tough and sometimes very frustrating! But it is so worth it! And you will probably find a lot of little other symptoms that you blame on age or something else will dissappear. Your attitude about what you can't eat will be a complete opposite. I lost a good 40 pounds as a plus. I now maintain a very comfortable weight and I make everything that I used to only no gluten...or dairy or soy. I feel great!
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#9 Joshiesmom

 
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Posted 30 December 2011 - 01:59 PM

Thank You all for your kind words and encouragement. I am sure I will be fine just like all of you seem to be. One step at a time. Thanks so much.
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#10 Skylark

 
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Posted 30 December 2011 - 06:44 PM

Totally normal. It's a big relief but an enormous change and you will not be able to eat the same. On the bright side, you will probably start feeling a lot better.

If it makes you smile, I like to tell my friends who are freaked out by my "difficult" diet that champagne, truffles, Russian caviar, and pâté de foie gras are gluten-free.

I eat well. I love making homemade soups with long-simmered broths like the bowl of beef vegetable soup I'm having tonight. I make Indian food, or gluten-free versions of classic recipes like beef bourguignon and chicken cacciatore. Almost anything homemade can be done gluten-free.

Where do you start? With plain, old-fashioned whole foods. Go to the grocery store and get any fruit or vegetable that looks good. They are all gluten-free. Get some plain meat to cook, and grab a bag each of plain rice (not a flavored mix) and potatoes. Make sure you have some extra-virgin olive oil and balsalmic vinegar for salads - it's easy and naturally gluten-free. Pick up some eggs for breakfast and plan on making hash browns or home fries since it's the weekend. You can have milk, Yoplait yogurt, and natural cheese but if your stomach is really messed up skip the dairy until you heal some.

There are hundreds of meal ideas in this thread to get you started. B)
http://www.celiac.co...ooking-tonight/

And our breakfast thread.
http://www.celiac.co...reakfast-today/
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#11 domesticactivist

 
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Posted 30 December 2011 - 07:49 PM

Your reaction sounds totally normal to me :) It's hard to hear you have a disease and of course there is some grieving to do. Even if you were sick before and feel happy to finally know what's wrong and what to do about it, you will have some mixed feelings about it. That's true for almost everyone!

The biopsy has nothing to do with cancer. Instead, they'll do an endoscopy and take samples from your small intestine to see how much damage has been done to the villi that line it. If it doesn't come back positive you should still go gluten free. Damage can be spotty and maybe you're one of the lucky ones that doesn't have too much damage yet. Getting these results now may help your doctors track your progress in healing later!

The diet takes some adjusting to. A bigger adjustment is looking out for cross-contamination. You need to get serious about making sure your food doesn't come into contact with gluten. As for the breads and pastas, there are lots of them out on the market, and you can make your own, too.

Especially while in the initial healing process I think it's best to stay away from those "gluten-free" processed products. Our family has gone to a totally whole-foods, grain-free diet and we are very happy with it and feel so much better than we did when using the "gluten-free" stuff. But if you just can't see giving those things up right now, rest assured, gluten-free versions are out there.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#12 New Community Member

 
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Posted 31 December 2011 - 12:05 AM

We all know where you're coming from. As already mentioned, it's completely normal to be frustrated, angry and upset, but we can't stay there forever. What has helped me is finding pleasure in the simple things and look for the bigger picture that one day I will feel better. I didn't realize how much I relied on "good food" to quench my temporary appetite for satisfaction. Used to be eating a Betty Crocker brownie, would make my night - those were my favorite. I'm usually not an optimist but having a good attitude about my health and gluten free diet even though it's hard at times has helped me tremendously. I hope you feel better soon. We are here for you! Don't hesitate to ask questions.

Philippians 4:8-9
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
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#13 AVR1962

 
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Posted 31 December 2011 - 02:23 AM

Yes, completely normal response. Oh goodness it is amazing what we go thru in our heads not only with the diagnosis but learning a whole new way of life. Sometimes it is not always accepted by friends and fmaily andthey can be seemingly insensative but bottom line in it all is we have to do what is best for s. The more I read the more I feel we would all benefit formn a gluten-free diet but trying to convince someone else of that is not always easy. We have been told all our lives that whole wheat is good for us, oops! And now we are learning that it is not? Wait, that is confusing. It is confusing enough for the general public and even more of a challenge for those of us who are seriously effected.

I have been gluten-freee for 8 months now and while I did a lot of two steps fwd and one step back for a while I can say I figured it out and have progressively gotten better. One of my docs is onboard and that helps alot. I no longer cook anything with gluten in it. My family loves the gravies and baked goods I make. I felt deprived at first......my system was really tore up and I had ALOT of healing to do so I stayed away from even the gluten-free products to allow time on a whole foods diet to work on my body.

Hang in there!!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#14 notme!

 
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Posted 31 December 2011 - 08:55 AM

i was explaining the going gluten-free to a friend i hadn't been in touch with in awhile: it was the hardest thing i ever did. it was the easiest thing i ever did.

it's a process, but it's totally worth it. for me, soooo many other things cleared up: vertigo, asthma, headache <i didn't even realize i had it allll the time until it went away, joint pain, fatigue, etc...

i am at about a year and a half - still have the occasional glutening, but never have i cheated purposely. that's how much of a difference this diet has made in my life :)

oh, and in the beginning i skipped the dairy and i still stay away from soy as much as possible. start out (as others have advised) "plain" - naturally gluten-free things like plain meat, veggies, etc - rice helped me alot in the beginning (good thing family likes rice!) also, i don't know where you live, but if you can get udi's bread or rudi's bread, that helped me SO MUCH to just make a sandwich whenever i wanted. also, tinkyada is the pasta that is most like the wheat pasta we are used to. lots of cracker, cookie, etc gluten free substitutes out there, but they cost a mint. easier and tastier to make your own!

good luck, you will be fine.
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#15 RiaG14

 
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Posted 03 January 2012 - 10:58 AM

Your reaction seems to be absolutely normal, since it was the same exact reaction I had! I've been gluten free for 6 days. My diagnosis came as a total shock for me since I only went for the blood test to "rule it out" and was not expecting the positive diagnosis. I was also very scared of the endoscopy and it was nothing, I didn't feel and don't remember a thing. Hang in there, supposedly it gets easier, and take comfort in knowing you are not alone. This message board seems to have a great deal of information and support and is filled with people ready to help and talk. You'll get through this and it will get easier, it has to, right?
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Diagnosed with celiac disease on 12/28/11 after positive blood test and biopsies after family member died of intestinal cancer caused by undiagnosed celiac. I do not have any GI symptoms but do get frequent headaches. I am trying to be 100% gluten-free for three months to see how my blood tests come back and if my headaches go away. Really, I'm just getting started with all of this and trying to figure it all out =)




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