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Do You Ever Just Not Care?


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29 replies to this topic

#16 VegasCeliacBuckeye

 
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Posted 22 July 2005 - 12:17 PM

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#17 tamarasarbinoff

 
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Posted 29 July 2005 - 07:21 AM

Thank you for the advice. I am so fed up with this diet, and how can you gain weight when you can't eat so many things that make you fat! Now I think I might be a little depressed from what you all said. Plus I forgot about the brain fog being a part of it.


I will try the B complex and multi vitamin. Thanks, Tammy
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#18 printmaker81

 
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Posted 31 July 2005 - 02:35 PM

Janelson,

College age is a rough time to find out you have something like celiac. Not only are you dealing with living on your own and the pressures of school, but my bet is if you're like me, there's not a whole lot of cash coming in and a whole lot going out to doctors and pharmacies and grocery stores. You really have to take a step back sometimes and remember that 1. you don't feel good plus this disease is known to affect mood and mental functioning 2. you're dealing with the news you have a chronic illness and a new lifestyle 3. you're body is going through changes that are tough even after going gluten-free. A lot of people go through sort of a withdrawal from gluten that feels worse than before. I know none of this is good news, but you're going through a lot physically, mentally, and emotionally. I think it is perfectly acceptible to do a little freaking out. I doubt anyone with Celiac could claim that they've never been angry or apathetic or depressed.

I was almost fired from one of my jobs. I waited tables at a fancy italian restaurant. Celiac weakened me so much that I couldn't carry trays with even just two plates on them. I dropped a tray of five plates with food for a really important client on night....After being in and out of the hospital and almost too weak to do much out of bed, I had to quit. When I wrote in to one of the forums here, someone told me they missed ten weeks of work. I also lost a solo show due to my illness (I'm an artist). I was so sick even the physical part of printmaking was impossible for me, the gallery pulled its invitation. That made me really depressed, not to mention it was a blow to a good source of income.

It takes a while to start feeling better, so it's tought to stick to the diet. Especially when you feel to bad to go to work or school. I was diagnosed back in May, and felt very much like you did. I would go to the grocery store and come home and cry. Even when I had just returned from the shopping I had nothing I wanted to eat (plus eating makes me nauseous). I felt like i was going to the store everyday for something I forgot or didn't know I needed or some kitchen tool or spice. While I still deal with a lot of the symptoms, I am starting to feel better and I am starting to get a hang of this whole diet. I even have been eating out some, and I have cut back my grocery store trips back to normal. It will get easier, and eventually it won't feel so restrictive. Eventually, you'll feel better, too. The bloating will go away and for me, my skin looks better than it ever has the glutten gave me acne and exema (sp?). I've started making art again, and I've even worked up to doing a little bit of yoga everyday. I try to remind myself how good I'll feel eventually. You will get there, and you'll feel better than you have maybe ever felt. Just try to keep things in perspective. So much is changing, and it is hard, don't let anyone tell you differently. Learning as much about the diet as you can helps. Wheat free worry free is a good book as many others have said. Good luck and hang in there!! It will get better. :D
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#19 BabySnooks

 
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Posted 31 July 2005 - 03:06 PM

Thank you for the advice.  I am so fed up with this diet, and how can you gain weight when you can't eat so many things that make you fat!  Now I think I might be a little depressed from what you all said.  Plus I forgot about the brain fog being a part of it. 


I will try the B complex and multi vitamin.  Thanks, Tammy

<{POST_SNAPBACK}>

Tamara,

What is this "brain fog" I hear celiacs talking about? I am newly diagnosed, and I have something weird that happens to my head when I first get up from a sitting down position and walk. It goes away within a couple of seconds, but it is unlike anything I have ever felt before.
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[size=3]BabySnooks
Diagnosed with celiac disease July 8, 2005 by endoscopy and colonoscopy.
Rediagnosed with Celiac Sprue August, 2006 with positive duodenal and small bowel biopsies.

#20 ianm

 
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Posted 31 July 2005 - 04:41 PM

What you are describing sounds more like vaso vagel syndrome (sp?). This is an abnormal adrenaline response caused by the blood in your body shifting when you get up. This causes your heart to beat inefficiently. I used to have this really bad before going gluten-free and it is no longer a problem.

Brain fog is basically the inability to concentrate. My head always felt like it was clamped in a vise and packed in an air tight box. Nothing could get in or out. Another way to describe it was like an out of body experience. I could see and hear everything that was going on around me but just could not connect with reality. That has gone away since going gluten-free and I don't miss it at all.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#21 nurse diesel

 
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Posted 31 July 2005 - 04:49 PM

Tammy,
Please take the advise the others have already given to heart...they know what they're talking about, and I promise you, we all felt the same at some point.
One thing I'd like to add about the missing work because of "the poops" or any other celiac disease GI complaint, is an FMLA. I urge everyone to check with their employer to see if they work the required hours to qualify for FMLA leave. I, too, was in danger of loosing my job, but my GI doc filled out the forms for an "intermittant" FMLA--meaning I can take a day here and there as needed for testing or illness, and my job can not penalize me for any of those absences. You parents of celiac disease kids out there need to apply, also....the "F" stands for "family" and your job will be protected, too, while you take care of the little one's medical needs.
Don't wait until you're sick as a dog and need time off...most companies will not "retro" the start date back to the previous/current illness, but will only begin coverage from the day the paperwork is approved. Check with you HR department for more info...and don't take "no" for an answer!!
Job security is the last thing we need to worry about, protect yourself, and take care of yourself...you deserve it ;)
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Tamera
(aka Nurse Diesel)

"well, I better learn how to swim
'cause the crossing is chilly and wide"
--Indigo Girls

#22 BabySnooks

 
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Posted 31 July 2005 - 05:54 PM

What you are describing sounds more like vaso vagel syndrome (sp?). This is an abnormal adrenaline response caused by the blood in your body shifting when you get up. This causes your heart to beat inefficiently. I used to have this really bad before going gluten-free and it is no longer a problem.

Brain fog is basically the inability to concentrate. My head always felt like it was clamped in a vise and packed in an air tight box. Nothing could get in or out. Another way to describe it was like an out of body experience. I could see and hear everything that was going on around me but just could not connect with reality. That has gone away since going gluten-free and I don't miss it at all.

<{POST_SNAPBACK}>

Thank you ianm.
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[size=3]BabySnooks
Diagnosed with celiac disease July 8, 2005 by endoscopy and colonoscopy.
Rediagnosed with Celiac Sprue August, 2006 with positive duodenal and small bowel biopsies.

#23 Guest_BERNESES_*

 
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Posted 05 August 2005 - 05:08 AM

Oh Tammy, I know how you feel. I was self-diagnosed this year after going through hell and I am in graduate school (not the same for sure but I at least understand the academic part). I don't really know how I made it through this past semester- some miracle for sure. I had multiple fights with professors and bosses that just don't "get" it. I finally just realized that some people are not going to and since I don't have a true diagnosis from a doctor, I was going to have to accomodate myself. But if you have a diagnosis, get a doctor's note and educate your professors. Not everyone will be helpful, or understanding- so talk to the ones who are and ask them for more accomodations/extensions if you can.

I fought like mad with my boss but finally, I just took matters into my own hands and talked to the people I worked with and people really helped me out.

It's not easy and it is a big learning curve, but it's sooooo worth it. So worth it. And you will be angry and have pity parties (I just had a HUGE one today- why me? why can't I have a normal life? why can't I be like everyone else?) But then I realized EVERYONE has their challenges and you've got to focus on what you can do/have. I expect I'' have plenty more days where I feel that way. I mourn my old "self" too butI figure if I follow this diet, which has improved my life so greatly, then that
'old self" will come shining through. Best, Beverly
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#24 nettiebeads

 
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Posted 05 August 2005 - 11:51 AM

[FONT=Impact][SIZE=1][SIZE=7][COLOR=green]
<_<  I was diagnoised with celiac disease about 3 months ago. I started failing out of my college courses because I missed too many days from being sick, my friends pretty much turned their back on me because I never felt like going out, My long think curly hair started falling out, and I hide from the world. Until the day my doctor finally said Janelle either you have tumors in your intestines or you have Celiac disease....I would rather have the tumors I think. The doctor told me I had celiac and then said "I dont know really anything about it so research it on the internet"...ha was not happy with what I found. They told me if I wanted wheat or glutten products that bad to just eat them every once in a while. Since I was diagnoised I have gained about 10 pounds and feel like I lost who I was! Lost what I had! Lost where I was going! Every bit of food I put in my mouth has a good chance of being posin to me...and sometimes I just dont care and I eat it. I almost got fired the other week because I was out sick from it. I use to be able to drink but now find that I get so sick from it...even gluten-free beverages. So many questions and so little answers! I hate the comments people make like ummmm this is good too bad you can never eat it again! My mother is down my throat constantly about seeing a nutrtionist...who can afford that! Many days my stomach bloats to the point that I look pregnant! How attractive! Some days I do fine with dealing with celiac disease but today is a bad day...I was sick all day at work so I bought my favorite salsa and chips to cheer me up...ha just read they have glutten in the salsa so I threw it out my bed room window. This celiac disease has taken everything away from me and I try to smile through it I really do but when you have to be held behind in college, almost get fired from your, lose your friends, and all your favorite foods...I cant help but feel hate!

<{POST_SNAPBACK}>

Things will get better. I promise. I can tell when I've been "poisoned" or gotten some cross-contamination. I feel like there's an inner rage that I find hard to control. The longer you go gluten-free, the better you will feel. I haven't had any tests, but I got lucky. I had been sick for six weeks and my gp took me off of all wheat. It was hard, but worth it when I started feeling better. And I used to love to bake!! I'm 46 now, was diagnosed 9 years ago. Just lately having this autoimmune disorder has started to bug me, so I've finally decided to join this chat room. I've found in reading the posts that it is a very individual disease and every one has to handle it the best way for them. I do know that I have to be on a high protein diet otherwise I feel like a zombie in a two ton body. Hang in there!
You are not alone.
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gluten-free since Oct 1996

#25 Guest_BellyTimber_*

 
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Posted 06 August 2005 - 08:11 AM

I had the same feelings as you Janelle in March and it's taken months toworkthrough with these fantastic friends (and am still doing so) so I hope your internet connection possibilities hold out well.
For what it's worth I have to avoid caffeine also,
aNd I don't have a doctor diagnosis, so that has been a complication in terms of medical reports.
Very best wishes,

:rolleyes:
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#26 Rikki Tikki

 
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Posted 06 August 2005 - 04:07 PM

Hi and welcome to everyone:
I spent eight weeks at my mom's because I was so sick I couldn't carry on anymore, so many of you are new to me. Anyway, I put on 20 lbs. while I was there!
It is very hard, so much of our lives involve food, going to someones house, out to eat, just sitting around talking.
I think most of us went through all of the emotions you are feeling. It does get better though, just one day you will get done being angry and see that there are so many worse diseases.
What I am trying to say is I think it's normal to be angry at first, but I promise it will pass.
Not that there won't be times when you think it sucks, maybe even cheat as I did, then you will get so tired of being sick and the way it drains your body that you will realize that it's just not worth eating that gluten stuff. It can feel overwhelming, but that's why we are here, to help and support each other.There were many people on this board that helped me see that. It will just come to you one day and then it will be ok.
Remember for each of us that get a diagnosis, thousands are either having silent damage or are so ill and don't know why. Probably being told by their doctors that it's all stress, IBS or in their head. I think that's what makes me grateful, for many years I really believed it was all stress. While I wish I didn't have it I am also grateful that at least I know why I was so ill.
Hey, there is a new topic, what is everyone grateful for?
If you just want to talk just email any of us and we will get back to you!
It appears I just went on and on, I just wanted to welcome all the new people. :rolleyes:
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#27 ianm

 
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Posted 06 August 2005 - 05:45 PM

Hey, there is a new topic, what is everyone grateful for?

<{POST_SNAPBACK}>


celiac disease or gluten intolerance was the best thing that ever happened to me. I went through 36 years of pure hell because of it but now I am being rewarded for sticking it out. I used to be obese but I am now down to 160lbs and actually have abs. I got rid of a dopey wife who just couldn't accept my disease and traded her in for a wonderful new girlfreind. I almost lost my job but now I have so many great things happening career wise. The opportunities being presented to me are almost overwhelming. I now have so much energy that most "normal" people can't keep up with me. My girlfreind says... Ummmmmm I can't talk about that here. :lol: :lol:

When I finally figured out what the problem was I heartily embraced the gluten-free lifestyle and have never looked back. Discovering you have celiac disease means that you have been given a second chance at life. Embrace it now because you may not get a third chance. I am not very religous but God does provide a path for your life but it is up to you to find it and follow it. This doesn't mean it will be easy but you will be rewarded for your efforts.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#28 cmom

 
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Posted 06 August 2005 - 06:27 PM

I normally do very well on my gluten-free diet and accept it as my life. However, last week I had my "non-caring" moment. I was fixing taco salad, thought I still had a packet of gluten-free taco seasoning, but didn't. My dear husband, who is very supportive, went to the store to get me a packet. We live in a small town and the selection is very poor. He came home with Taco Bell seasoning in which the first ingredient was wheat flour. Poor husband didn't think of reading the label on that. He felt bad but I was so aggravated that he couldn't just go to the store and pick up something for me that I used it and ate it with the rest of the family. Also, lately, it has bothered me when we've been away from home and couldn't just pull in to any restaurant and get something to eat like everyone else does. But I know I will overcome! :lol:
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Robin from Indiana

#29 Rikki Tikki

 
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Posted 06 August 2005 - 06:33 PM

Good Ianm, I am glad everything is going good for you! What is everyone else grateful for?
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#30 Guest_nini_*

 
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Posted 06 August 2005 - 06:59 PM

I was obese prior to my dx and now after losing 80 pounds I am well on my way to being the healthy slim looker that I know I am! That's what I'm grateful for!

Oh and the fact that my daughter will not have to go through years of being sick with no one knowing what was causing her symptoms and not calling her a hypochondriac because they couldn't find a physically apparent reason...
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