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Hi...(Recently Diagnosed)


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#1 bellalunarena

 
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Posted 31 July 2013 - 06:24 PM

I did a search, and saw a thread where it said that most members make their introductions here. 

 

I am Bella. I am 30, and last week I was diagnosed with celiac disease. 

 

I wrote a post on my blog with my story, but I don't know if I'm allowed to link to it, I have a lot more reading to do here, though I've been using the heck out of the forums as a lurker, absorbing all the information that I can. I feel so overwhelmed...and angry. 

 

Long story short, I had my gallbladder taken out last year. I began to suspect a gluten intolerance, but occasionally indulged anyways, thinking that my only consequence would be the diarrhea, bloating, stomach cramps and pain that I'd feel later on...but sometimes I felt that a particular dish was worth that pain. After 13 months of hell (can I say hell?), abdominal pain identical to the pain that led to the removal of my gallbladder drove me (sans insurance...ouch) back to the hospital, where a celiac panel was done on my blood, and a CT scan showed major inflammation of my small and large intestines. The GI doctor on call diagnosed me as having celiac disease, and told me that as soon as my insurance is reinstated, to get myself to a GI doctor in network for a colonoscopy/endoscopy to assess the damage and confirm the diagnosis.

 

It's been a week, and I am just so in shock. I feel so angry, so hurt, so overwhelmed with the sudden shifting of my world to a reality where I now need to be excruciatingly careful. 

 

Was anyone else shocked? Sad? Angry? I really feel like I'm going through the stages of grief here, and I feel a little ridiculous for feeling that way. It isn't the end of the world, and I'm sure it will all become routine, but I really just feel like stamping my feet, throwing a tantrum, and screaming out that this really stinks. Can I say sucks? Because it really sucks, if only for right now. Every time I think I'm okay, I'm not. I went out to Outback with friends, and they got Blooming Onions. I used to tear the heck out of a Blooming Onion every once in a great while (because they aren't really healthy anyways, and I am trying to mind my weight (I have lost 65lbs since October, though I now wonder how much was diet, how much was medication, and how much was malabsorption)...but suddenly I want all the things I can't have anymore, even though I barely ate them anyways. 

 

I feel like I'm overreacting, and I hate it. 

 

I hope, emotionally at least, this will get better. I've been gluten-free for a week now, and while I am a far cry from being healthy again, I've noticed that my uh...my number 2's, are not keeping me a servant to my toilet, that I seem to be gaining a bit of normalcy in that department, at least...

 

I guess I didn't really make a long story short... :-(

 

 


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#2 notme!

 
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Posted 31 July 2013 - 08:18 PM

aww, sweetie, everybody feels the same way at first.  it IS a shock!  and you have to shift the way you eat - there's alot of things you have to re-learn.  you are going through what most of us went through - it's actually a grieving process.  and you may be having withdrawal, so treat yourself kindly.  i would suggest chucking the dairy for a little while and trying to eat simply.  outback has a good rep for being able to keep gluten free dishes actually gluten free, but i would beware of eating out  :(  it DOES suck!  you CAN say hell!  you CAN'T post a link (but you can blog here if you wish) and welcome to the best club you never wanted to join   -_-   there is no such thing as a stupid question on here and we're used to tmi (lolz)  hope you feel better.


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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

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#3 AlwaysLearning

 
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Posted 31 July 2013 - 11:53 PM

Within two days of going gluten free, you should start to see/feel differences in your body that should help you get past the initial shock, little things that you may not have even realized were a problem will suddenly go away. For instance, my hands and feet used to be painfully cold, but all of a sudden, they were the same temperature as the rest of my body. Add up a dozen or two little things like that, and you should start to be able to find some more positives to cling to. Enough of them, and you may even start to be a little thrilled by your new normal. 

Other than that, I'd say that is isn't nearly as bad as you may have first thought. You'll most likely end up eating a lot healthier in the long run and there are still plenty of options out there for us.

But I'll admit that I went through some phases in the beginning. First, I was buying every gluten-free item in the grocery store that looked enticing just so that I didn't feel deprived, such as the gluten-free muffins and cookies that would never make my normal grocery list. Then I went through a phase where I was buying expensive raw ingredients for my own cooking, like lobster tail. I guess I was about 5 months in when I fell into more regular patterns though the previous phase of trying to up my game in the kitchen definitely made me a better cook overall.

Also, look for snack foods here in the beginning that help satisfy cravings. I found popcorn was good if I was feeling extra hungry (popped from scratch, of course) and apples seemed to fulfill me when I couldn't figure out what it was that I wanted.

And you'll start to discover what items are safe out there in the world. For instance, if I have to stop in at a gas station convenience store, I know that they are likely to carry a single brand of gluten-free protein bars, the plain potato chips are gluten free, and I can normally find unsalted nuts that are less likely to be cross contaminated.

There is a lot to get through in the first few months so expecting to have quite a few fails should make it easier to deal with them when they happen. If you don't accidentally gluten yourself at least twice a week in the first couple weeks, you'd be an exception to the rule. And definitely find the lists of items that contain hidden gluten and how to decontaminate your kitchen and you should be able to avoid some of the worst glutenings.

I'd wish you luck, but if you're already here and reading, you're going to do great!


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#4 w8in4dave

 
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Posted 01 August 2013 - 07:32 AM

I was not up set when I learned I had Celiac, I was happy!! I thought yay!! They finally found out what was wrong with me!! It isn't cancer it isn't a surgery, it is a diet change! Thats it! Change your diet! Eat healthy with no Gluten and your good!! You know those bloomin onions are not good for you so now just don't eat them. 


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Recovering Gluten Eater 

DX'd June 17th 2013


#5 nvsmom

 
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Posted 01 August 2013 - 08:03 AM

(Hugs) I remember being really mad that I had to have pain and fatigue for 38 years because no doctor could, or would, connect the dots. I was pretty bitter that I could have cut just a few ingredients out of my life and had a much healthier youth - I regret that time lost.  :(

 

I splurged in the first few months. i felt deprived so I bought gluten-free cookies, yougurt covered pretzels, and brownie or muffin mixes. I ate a lot of M&M's too since many other old treats were now off limits. I overindulged but I eventually moved on. I think I needed time to grieve and get over it, so I think what you are feeling is pretty normal. You are not over-reacting, you are just reacting. Give yourself some time to adjust. By Christmas I am willing to bet that this new way of eating and shopping will feel natural.

 

Some people hit withdrawal in the first month and that will negatively affect your mood and energy levels as well, making it that much harder to adjust. All you can do is hang in there, do lots of reading on the diet, find good recipes and places to shop, and wait to feel better. 

 

Best wishes


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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#6 bellalunarena

 
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Posted 01 August 2013 - 02:29 PM

I was not up set when I learned I had Celiac, I was happy!! I thought yay!! They finally found out what was wrong with me!! It isn't cancer it isn't a surgery, it is a diet change! Thats it! Change your diet! Eat healthy with no Gluten and your good!! You know those bloomin onions are not good for you so now just don't eat them. 

I think I'm more angry at the unnecessary surgery and the time (not just the past 13 months since surgery but for years before that too) lost to feeling like poop (no pun intended) all the time.

 

To the person who said about accidental glutening...totally did it today. MIL assured me her deli meats were gluten free...they aren't. I feel awful. I have a migraine, I'm dizzy, crampy, chills, and I can't stay away from my toilet.

 

I have a tiny nagging at the back of my mind that maybe she was seeing if I really had celiac disease...but dang, all she had to do was ask and I would have showed her my bloodwork and CT image, haha. 

 

But no. It's not funny. I feel like crap. 


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#7 GottaSki

 
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Posted 01 August 2013 - 02:40 PM

I think I'm more angry at the unnecessary surgery and the time (not just the past 13 months since surgery but for years before that too) lost to feeling like poop (no pun intended) all the time.

 

To the person who said about accidental glutening...totally did it today. MIL assured me her deli meats were gluten free...they aren't. I feel awful. I have a migraine, I'm dizzy, crampy, chills, and I can't stay away from my toilet.

 

I have a tiny nagging at the back of my mind that maybe she was seeing if I really had celiac disease...but dang, all she had to do was ask and I would have showed her my bloodwork and CT image, haha. 

 

But no. It's not funny. I feel like crap. 

 

Welcome Bella :)

 

Sorry you got hit...the early days that will happen.  Removing all gluten is not easy and needs to be accomplished during a time that most of us are not at our strongest to begin with.  As for your MIL...let's give her the benefit of the doubt for now...I'm assuming it is early in her learning everything gluten too.  It is possible that the meat was gluten free...but something else in the kitchen cross contaminated it.

 

As others already mentioned....grieving is completely normal -- you have lost the spontaneity most enjoy when eating -- it is ok to be bummed -- you will go through many more emotional days as you learn to live gluten-free...some happy days, some sad -- many frustrating.

 

Be nice to yourself and learn all you can...it's likely someone else has given you this thread...but do read it carefully -- it will speed the very difficult transition.

 

http://www.celiac.co...ewbie-info-101/

 

Hang in there and let us know if we can help :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 eers03

 
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Posted 01 August 2013 - 06:24 PM

Bella,

 

I'm 32 and was diagnosed last October.  This really is the best place to be for feedback, learning, and venting.  Hang in there!  I went through all the same emotions you did.  I'm getting settled in now and you will too!


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Diagnosis 11/2012

#9 whitepine

 
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Posted 01 August 2013 - 06:48 PM

I was pretty frustrated when I realized that I really had to give up everything. I am still waiting for a full diagnosis but I started by eliminating wheat first but then I had to remove all gluten because my symptoms weren't improving. Before I did all of this though I had one last full out night of drinking beer and man was I ever sick the next day. But it marked the day that I stopped gluten.

 

I miss eating my favorite things and drinking beer but I can't do it because I know how bad it would feel if I did. It gets frustrating when people offer me things but I say that I can't as much as I'd like to. Some people even get mad at me for not taking the food! They don't understand the repercussions. Or having to sit and watch people eat food at a restaurant and there's nothing on the menu that I can eat, even salads.  
So from time to time I am upset and mad about it but I know it's better than feeling really sick all of the time.
You'll get used to it and you CAN have the foods that you love you just have to learn how to make them yourself. There are also many gluten free restaurants around which is always a treat.
Hang in there, your work will be worth your while and you will get better, it takes awhile but you will feel a lot better.

 


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#10 NateJ

 
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Posted 02 August 2013 - 04:46 AM

Overwhelmed, angry, frustrated, and yes hopeless at times. These are all normal feelings.

You can always come here, day or night, and there is usually always someone online that is willing to listen. Sometimes thats the best help you can get.


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#11 1desperateladysaved

 
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Posted 02 August 2013 - 05:05 AM

For a time it will be difficult.  Learn all you can about avoiding gluten.  Now, when your body needs some rest is a good time for reading.  When you are feeling better, or losing symptoms it will get exciting.

 

Get Well ***

 

D


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#12 LadyK

 
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Posted 02 August 2013 - 06:48 AM

Good luck! It gets easier.


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Diagnosed with Celiac Disease December 2000, at age 10.


#13 bellalunarena

 
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Posted 02 August 2013 - 01:31 PM

Welcome Bella :)

 

Sorry you got hit...the early days that will happen.  Removing all gluten is not easy and needs to be accomplished during a time that most of us are not at our strongest to begin with.  As for your MIL...let's give her the benefit of the doubt for now...I'm assuming it is early in her learning everything gluten too.  It is possible that the meat was gluten free...but something else in the kitchen cross contaminated it.

 

Be nice to yourself and learn all you can...it's likely someone else has given you this thread...but do read it carefully -- it will speed the very difficult transition.

 

http://www.celiac.co...ewbie-info-101/

 

Hang in there and let us know if we can help :)

I feel awful...I promised my kids that I'd take them to the park today, but I still feel so horrible from that glutening that I don't know if I physically *can*, and my kids don't quite understand that Mommy got sick from eating deli meat. 

 

I didn't actually *mean* that my MIL did it on purpose, I know she didn't...I try to joke about things when I'm really upset or not feeling too well.


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#14 kareng

 
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Posted 02 August 2013 - 01:41 PM

I feel awful...I promised my kids that I'd take them to the park today, but I still feel so horrible from that glutening that I don't know if I physically *can*, and my kids don't quite understand that Mommy got sick from eating deli meat. 
 
I didn't actually *mean* that my MIL did it on purpose, I know she didn't...I try to joke about things when I'm really upset or not feeling too well.


I asked this on another thread, too. Which lunch meat contained gluten? I haven't seen any in the US, so I think it would be helpful for everyone to know.
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#15 notme!

 
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Posted 02 August 2013 - 02:41 PM

I feel awful...I promised my kids that I'd take them to the park today, but I still feel so horrible from that glutening that I don't know if I physically *can*, and my kids don't quite understand that Mommy got sick from eating deli meat. 

 

I didn't actually *mean* that my MIL did it on purpose, I know she didn't...I try to joke about things when I'm really upset or not feeling too well.

oh, this was an issue in my house in the 'beginning' - don't let gluten bread sandwich makers touch lunchmeat that you plan to eat.  think about it, you get out the bread, put it on the plate, put on your condiments (another cc hotspot b/c of double dippers) and get your lunchmeat out of the package.  so, gluten (from bread hand) is in the bag = you need new lunchmeat.  nobody washes their hands in between each step,so your lunchmeat possibly has gluten in it.  for me, it doesn't take much.  i have all my separate meats and cheeses - they are marked and HANDS OFF.  also, anything that people tend to double-dip the knife or spoon into, i get my own just for me.  it's a pain in the butt in the beginning, but worth it not to have 'sick days'  <_<


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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

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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