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Celiac Equals A Lonely Life


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33 replies to this topic

#16 Myself

 
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Posted 19 June 2013 - 06:40 PM

I'm going through this process of always being alone myself.  My gluten problem is basically a self-diagnosed one seeing as how I cannot find a doctor who is willing to cooperate or seriously address my concerns.  Most of the time I've been prescribed anti-depressants as the catch-all solution with the tacit implication that I'm otherwise perfectly healthy.  I usually walk away feeling like a hypochondriac with imagined symptoms when deep down inside I know that I am not such a case.  I have begun to doubt myself and my own intuitions and instincts which I've learned to rely on throughout my life.  I sometimes wonder if maybe this really is just a manifestation of deep depression?  But then I go back to the research and all of the signs keep pointing back to the same place and that is of course a gluten problem.  Beyond the issue of being unable to get officially diagnosed lies the troubles of having friends and family not believing you either.  The people closest to me will never accept that there's something truly wrong with me until I can provide them with sort of professional documentation to back it up.  This has caused me to withdraw and isolate myself and it has a cascading effect which spans every potential relationship in my life.  How do I explain my physical and emotional symptoms to anyone without proof?  I'm deeply embarrassed of my forgetfulness, night sweats, stomach always gurgling etc.  It has destroyed my confidence and has left me feeling inadequate and undesirable as a person.  I have passed many up social opportunities in my life because of this and people's perceptions of me are so skewed as a result.  It's amazing how people will jump to conclusions.  No I'm not a closeted gay person because I'm introverted and choose to remain alone.  I'm a tortured soul with no outlet for relief.


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#17 Salax

 
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Posted 21 June 2013 - 02:31 PM

 Awareness, change and adaptations are happening way too slowly. 

 

I can see where you are coming from here. At least with change and adaptations. Awareness is up, but change or the willingness to change is, well.....slow to put it mildly. But I do believe we are incharge of our own destiny. It has been said, "be the change you want to see in the world" so It's up to us as individuals to make the change happen, all we can do is try.

 

I have heard it said, "life begins at the edge of your comfort zone." I live by this everyday. And I have found it to be true (at least to me). With that comes change of thinking, change of behavior and change in responses to things/situations like this.  We can change our own environment and our responses to that environment. Yea, it might be uncomfortable, but then "life begins at the edge of your comfort zone" B)


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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#18 IrishHeart

 
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Posted 21 June 2013 - 02:45 PM

. Yea, it might be uncomfortable, but then "life begins at the edge of your comfort zone" B)

 

exactly! if you want your family and friends to understand where you are coming from, well, you have to do some "educating"!

 

I say: Make a  nice dinner, invite them over ....and show them that delicious food is not a "celiac" or Gluten issue..

......it's about great food, good times and happiness.

I have friends coming for dinner tomorrow and they have also cooked for me (without a problem!)

 

It's about living your life!!.  

 

Celiac does not define me or confine me. Period.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#19 Marie1976

 
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Posted 21 June 2013 - 10:22 PM

Hi Bee, I just wanted to say that I know how you feel, we've all been there. This is a great forum. I have been depressed about having celiac too. When I go somewhere I often bring my own food. I do think it makes people feel weird, but I would rather risk offending someone than chance getting sick by eating their food. 

I also still go to dinner with friends and if I know in advance I won't be able to eat anything at the restaurant we're going to, I eat before I go, and I just order a drink. It's awkward but I explain to people that I'm very sensitive to even a breadcrumb and I PRETEND that I don't mind just ordering a drink and eating beforehand, so that puts them more at ease.

Yes, inside I'm pissed off that I have to haul my own stupid food with me everywhere or eat BEFORE going to dinner, but that's just the way it is and I'm trying to be more accepting of it. :/

My only other advice to you is ... listen to IrishHeart's advice. She's awesome. 

And there are a lot of other great people on this forum who have helped me too. 

Hang in there. 


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#20 Coeliacblog

 
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Posted 21 June 2013 - 11:43 PM

I can relate to this thread. Celiac Disease does make me feel depressed at times and I have been diagnosed for over 4 years. I think the mental side of the disease is the hardest part, people just don't get it.

But let's try and look on the Brightside, we are no longer feeling depressed and suffering with gluten symptoms. I think if we all stick together and raise awareness of the disease the ignorant few who exclude us now, will have no choice but to be educated and accept the disease for what it is.

 

 


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#21 Newtoitall

 
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Posted 23 June 2013 - 07:59 AM

Positive Affirmation and Video Games and some Netflix will make it all better :P

 

You need yourself celiac friends, a support group and some spirituality of the abstract variety :D


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Gluten Free since Xmas 2010

 

Current Auto Immune Diseases:

 

Celiac Disease, Interstitial Cystitis, IBS, Dermatitis Herpetiformis, I'm playing life on Hard Mode.

 

#22 w8in4dave

 
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Posted 24 June 2013 - 07:49 PM

Wow I went to a 6 year olds birthday party and was asked If I wanted cake and icecream, I graciously said ohh no thank you! And later I heard the cup cakes were gluten free! I said Ohhh I can eat those. And everyone looked at me!! I said ohh umm yea I was DX'd with Celiac a couple weeks ago. My friend said ohhhh you need to talk to my sister!! She ran and got her sister and she hooked me up with her phone number and wow!! I had so much support I was over whelmed !!! We go to my husbands brothers house for dinner on holidays and stuff, I haven't told them about it. I probably won't! I will prob just make something for me to eat. I have already gotten support from my friends!! One of my best friends already went shopping with me and looked everything up on line so she could learn what I could and could not eat!! I am also going on Vaca with my other friend in 3 weeks!! If your friends are dumping you because you have any kind of health issue it is no wonder your depressed!! And if Family members don't want you there because of it!! I'd say you can kiss my lilly white!! You can find friends that will treat you better!! Don't put up with people treating you bad!! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#23 BZBee

 
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Posted 13 July 2013 - 01:14 PM

I really do appreciate my online celiac community. I don't mind eating gluten-free and in many cases I like the gluten-free variations better than the gluten. I definitely prefer it to being sick all the time! It just gets frustrating having to always explain the disease and why I eat the way I do.

I just came back from a week away and my hotel didn't have the promised fridge and microwave. Some places were accommodating but I'm sick of eggs, salads, and ice cream for awhile.

Now, I'm trying to recapture my muscles that starved to death from malabsorption. It feels great to be able to work out again, and it cures the depression.
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#24 IrishHeart

 
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Posted 13 July 2013 - 01:32 PM

I really do appreciate my online celiac community. I don't mind eating gluten-free and in many cases I like the gluten-free variations better than the gluten. I definitely prefer it to being sick all the time! It just gets frustrating having to always explain the disease and why I eat the way I do.

I just came back from a week away and my hotel didn't have the promised fridge and microwave. Some places were accommodating but I'm sick of eggs, salads, and ice cream for awhile.

Now, I'm trying to recapture my muscles that starved to death from malabsorption. It feels great to be able to work out again, and it cures the depression.

 

 

I am so happy to be able to work out again (it's been YEARS!) and I suggest going slowly at first. Protein and good carbs and water.

 

I am so delighted to have muscle tone again. I had ZIP...almost atrophied. But it's getting better and better.

 

Good luck, hon!!! :)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#25 BZBee

 
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Posted 13 July 2013 - 02:10 PM

Yes, lots of protein and vitamins. I already made the mistake of pushing myself :( However, I'm glad my muscles are responding since they've been starving to death for so long. I feel happy that the muscle aches are self induced and not because of malabsorption.
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#26 alesusy

 
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Posted 17 July 2013 - 10:42 AM

I think

 

I am blessed with several friends who took the time to learn what I can eat and cook it special. Also, I'm not the only one. I have invited people over for dinner quite successfully too. Frankly things are much easier when you start feeling better, which in my case happened about 7 months after gluten-free, and I can tell you, I'm not HEALED yet, but things have improved immensely. What it boils down to is:

- not center your social life on food. Going to gatherings and bringing your own food or eating before

- when people are cooking for you either discuss the menu before or go prepared to skip the meal or to eat only half of the menu

- in restaurants, strict choice of roast meat and potatoes or fish and potatoes, OR gluten free pasta. It is much easier here in Italy, because most restaurants do know what they are dealing with: however it DOES entail always talking to the maitre. It's becoming second nature...

- shopping for gluten free products and automatically eliminating suspicious foods. It does become second nature, this too.

 

I'm going next week on holidays in Sardinia at a friend's house. I'm going to bring along some of my stuff. I'm conscious of the fact that it means everybody will keep worrying about how to feed me, but the only way I found to deal with the situation is shopping myself for my stuff and either proposing to cook for everybody or at the very least cook my own stuff making sure I'm using clean pans clean spoons etc. If you do it naturally enough, people will follow suit.

 

I HAVE been told by several people that I talked only about my bowels and/or that I talked only about my own problems. People just do not realize what it means feeling sick. You are not in the hospital and look more or less norale, so they really have a hard time believing how sick you feel. Luckily, when you start feeling better you also start getting more of an interest in life and can curb your impulse to expound about your own health

 

Having said all this, friends who will not take the time and effort to understand are not much as friends. I think we can all use the occasion to clean our mailing lists and Facebook friends' list. Family we cannot clean up, but on the other hand yelling at family is OK.


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#27 dani nero

 
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Posted 17 July 2013 - 03:45 PM

  :o  you are entitled to your opinion, of course, dani... but I have to say that I simply cannot agree with any of those statements.

 

I think that whatever way WE view having celiac is the way the others in our lives will,  too. 

 

I certainly do not think life is rotten. I worked hard to get my life back to normal after being very ill and I do not really allow anyone to make me feel inferior or bad because I have celiac.

 

I do not talk about it that much with people (outside of other celiacs) because it is not the focal point of my life.

I choose times to promote celiac awareness, too because I think we are the only ones who can really make a difference in how it is perceived. 

 

Attitude plays a big part in adaptation and acceptance. IMHO

 

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.


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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#28 dilettantesteph

 
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Posted 18 July 2013 - 03:35 AM

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.

 

I read about your recent glutening in another thread.  I get to feeling these same feelings that you are expressing when I am glutened.  Life will seem much more hopeful when you get over it (the glutening).  Hang in there.


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#29 dani nero

 
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Posted 18 July 2013 - 06:45 AM

Perhaps it is a bad idea to judge how life has been in general when close to a glutenation, but I really doubt it's all in my head. For example, here I am today, visiting family away from home, yet I'm here left alone at their home by myself because I'm not feeling well, and everyone thinks I'm not feeling well because I don't distract or activate myself. So instead of keeping me company, they're out swimming.

 

It isn't my intention to be diverting the conversation away from the op, but I just think that basing our happiness on how others behave towards us, and specially when we're feeling lonely is a crappy side of life due to people not knowing enough about celiac! They actually think that our lives would not be as hard if we ate gluten because then we'd at least not be deprived of "food".

BZBee please let us know how it goes with your family and friends. 


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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#30 BZBee

 
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Posted 18 July 2013 - 07:01 AM

My immediate family is trying, and asking me more questions on what I can eat and how to prepare when I come over. My outside family, not so much but I chose to distance myself from them on food occasions. I'm definitely learning who my friends are! Not that I need to have social occasions around food and have absolutely no problem preparing my own, but I've been excluded from non-food functions as well. I have (real friends) that are cool with the idea. I am getting tired of explaining the disease and diet, but I remind myself that I didn't know much about celiac disease before diagnosis. Most, I think just want educated on the topic.

I refuse to let the disease define me. I still go out and do my activities when I can and I'm rebuilding my body. When I work out I have to keep "before sickness" body out of my head and focus on what I've got at the present. There's good days and bad days but I do seem to have more good days than bad. So I guess I'm headed in the right direction.
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