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Celiac Equals A Lonely Life


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33 replies to this topic

#1 BZBee

 
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Posted 15 June 2013 - 06:45 PM

I'm trying to battle my depression with diet and exercise since medications caused me severe neurological problems. However, the Celiac isolation is making it so hard to combat the blues. I just learned I wasn't invited to family function because they didn't want to worry about my diet (even though I bring my own). This seems to be the trend. My friends don't have me over anymore and now my family is excluding me. This disease is so hard mentally.
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#2 tarnalberry

 
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Posted 15 June 2013 - 06:53 PM

It IS hard mentally.  But so are crappy friends, and that seems to be what you've got there.  I'd encourage you to tell them "please don't exclude me just because I have to eat differently.  it makes me sad and I miss seeing you."  But I'd also encourage you to find new, better, friends.  'Cause you're aren't being very friendly. :(


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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 pricklypear1971

 
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Posted 15 June 2013 - 07:23 PM

I'm trying to battle my depression with diet and exercise since medications caused me severe neurological problems. However, the Celiac isolation is making it so hard to combat the blues. I just learned I wasn't invited to family function because they didn't want to worry about my diet (even though I bring my own). This seems to be the trend. My friends don't have me over anymore and now my family is excluding me. This disease is so hard mentally.


I know I sound like a broken record, but has your thyroid been screened? Not just tsh - but free t3/t4 and thyroid antibodies? That could be contributing (or solely responsible for) your depression.

There's no doubt Celiac can be isolating. Adding depression on top makes it that much more difficult, I'm sure.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 1desperateladysaved

 
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Posted 15 June 2013 - 07:36 PM

Yes, mentally it is a challenge.  I am planning to try a new Bible study.  I am noticing I seem to keep talking about celiac, and not too many want to hear about it.  I also have noticed that when I feel rough physically, I have the hardest time mentally.  Its hard to make new friends when one is caught up in fighting celiac damage.  Sometimes I feel so high need; it is hard to make friends when right away you want to express this high need situation in your life. 

 

I think one of the things to do is to realize it is a hard thing to recover from extreme physical damage.  When one realizes this, you go on doing whatever you can to keep going and don't expect too much of yourselfRemember, this is a difficult  adjustment, but the time for the adjustment is not forever.

 

I hope we can get sympathy, help, and friendship on this forum.  I hope we will have family members that will come along side and help as they should.  I hope we will have friends and others to help in the times of need.

 

***Get Well***

 

D


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#5 Brandiwine

 
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Posted 16 June 2013 - 03:38 AM

I feel you! I haven't seen any of my friends since this started. Actually as weird as it sounds I've gotten closer to my ex husband, we have to talk about Celiac and GFD because of our oldest son. I'm sure he gets sick of hearing about it too. :-/ I too fight depression, and I feel it's because this has taken over my life. Don't get me wrong I'm thankful to have a name and treatment for it. I'm thankful for the improvements my son and I have made. But I feel like I eat, sleep, and breath GFD and Celiac! If I try to distract myself with tasks and jobs, I start having nightmares of eating gluten! Weird huh?!
Have you looked into support groups near you? I would think that should help a lot to make new friends that share this experience.
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon


#6 IrishHeart

 
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Posted 16 June 2013 - 07:11 AM

I am sorry this has happened to you, Bee.

 

When I was very ill before DX, I had a few people drift away from me. Sometimes, adversity reveals true character. That was very hurtful, but I figure if they could not be there for me when I was down and out, then maybe they were not true friends after all. I actually made new friends through having celiac and this has helped me cope in many ways..

 

I am fortunate to have some loyal, long time  friends who took the time to learn about celiac and cross contamination and I have been to their homes

and had safe meals. They asked me many questions and we decided on the menu together. I brought them a flexible cutting board for their use and I helped prepare dinner. They wanted me to watch what they were doing.

I brought wine and dessert (a flourless chocolate cake with ganache that is decadent and delicious, for example) and we had a great time.

I have done this safely several times.

 

I also invite them to my home and cook for them (as I did before DX) and no one misses gluten, I assure you. :)

 

You may have to talk with them about how they are making you feel (as tarnalberry has suggested) but you may also have to do some educating to have them see there is no need to exclude you and there is certainly no need for them to stop coming around to your house, either.

 

As for your family's rude behavior, you can simply say  to all of them "you know, I want to come to family gatherings and I can  bring my own food so you don't have to worry. Please, don't leave me out." :)

 

I know this puts a lot of you--making these gestures and taking the initiative--but, hon, this is your life now and you have to take steps to make it more easy on you. I know it is hard, and I felt the way you are feeling too (mostly because I miss the spontaneity of just going somewhere new and dining anywhere I wanted) but I knew I had to make the changes to get past the initial sadness to make dining with family and friends fun again.

 

And as Prickly points out, it could be your thyroid contributing to the feelings of depression...and it could also be a Vit D, B-12 or folate deficiency too. I felt pretty depressed and anxious when I was first DXed because I was sick and had many deficiencies going on. (they are all normal now and I feel fine. And meds made me feel worse, too, BTW) 

 

Make sure you have your levels checked.

 

I hope you feel better soon! Talk to us when you are feeling this way. We get it.

I promise you, it gets easier as it becomes "the new normal" for you. Chin up!


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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


#7 Celiac Mindwarp

 
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Posted 16 June 2013 - 07:45 AM

Hey there
Sorry you are having such a tough time with this, I know it is even harder through depression. I don't know how long you have been on a gluten-free diet, but I know my mental health has improved massively since September 12, and more so since January when I discovered other food intolerances.

I lost a load of friends before diagnosed ncgi, I was pretty unwell for several years. I have found that being as matter of fact as I can about the diet works best. I try not to talk about it too much, I will say a few lines if asked and say something like I am here to see you guys, what have you been up to? to try and deflect. I take my own food everywhere, and invite people to mine more often than I used to. Having them home and feeding them 'normal' gluten-free food like a roast and potatoes, or a risotto shows them it doesn't have to be weird or gourmet. Killer dessert helps.

I would have a quiet, non confrontational word. Maybe suggest something you can do 'come to mine' 'let's go for a picnic' etc.

The truth is, you will have to be the one to make an effort. I come here when I need to moan, my family is very supportive, but even they don't want to hear about it all the time.

I took inspiration from the folks here who are determined not to let this disease take any more of their lives.

You might be upset, but my guess is that if you can go to them with something positive, they will likely be positive back. I think I may be a bit like an enthusiastic puppy, but I get a lot more invitations now.

Let us know how you get on, keep talking to us :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#8 Adalaide

 
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Posted 16 June 2013 - 10:30 AM

With family the only thing I can suggest is pulling aside the person most likely to make sure it gets around and making sure they know that you want to be included. I think part of the problem can sometimes be that they feel awkward because they make assumptions about how it must be for you. Clearing the air on this will be the best way to make sure that family get togethers in the future include you and aren't full of any unnecessary weirdness. Just the regular kind. :D

 

I've had sort of similar issues with my best friend a bit. She wasn't sure what we could do since our normal thing when we would hang out was to go chill at Denny's or IHOP and share a plate of fries or some pancakes or some such. I talked to her about it and made sure she understood that it isn't weird or awkward for me to either bring myself a snack or to just come along and not eat as long as she doesn't mind. Or we could go to a place I could eat. Or we could find other things to do, like chill at a park in the shade and bring our own food or walk around the mall in the air conditioning and look at all the things we can't afford. We even have a Chick-fil-A and Orange Julius at our mall so if we get hungry I can eat in the food court with her.

 

It is quite isolating. Through the time I was the sickest before my diagnosis I lost many friends. I wasn't well enough to go out much, and then became so ill I never left home besides appointments and the occasional grocery shopping and pharmacy visit. With the few friends I have left, and have made since my diagnosis I have had to really make changes to the way I approach friendship in many ways. I have discovered I absolutely love (beyond all comprehension) cooking for people. Two years ago I couldn't have imagined inviting people into my house and cooking for them, it would have been so much pressure and weirdness and just...  *shudder* but now I can't get enough.

 

Lastly, if it comes down to people who just don't have the time, or energy, or just don't care enough to invite you to something after a conversation about how things don't need to be weird. Well... they were never really your friend. You don't need people like that in your life. If you are nothing more than a non-contagious disease to them, screw them. And frankly, that goes for family too. Will it hurt? Sure. But they can be replaced with caring and loving individuals who will see you for a whole person, not as nothing more than a disease or someone who can't eat X or Y. My "family" isn't just my parents, sibling, husband, and other blood... many here are my family also. Sometimes you can pick your family, and do a better job than you did when you were born. :D


  • 1

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#9 dani nero

 
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Posted 16 June 2013 - 04:15 PM

Life is rotten isn't it. Doesn't feel like like celiacs will be part of the norm for decades. Awareness, change and adaptations are happening way too slowly. 


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

#10 IrishHeart

 
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Posted 16 June 2013 - 04:29 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


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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


#11 Celiac Mindwarp

 
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Posted 16 June 2013 - 11:43 PM

I am very happy, and have a wonderful life, full of great friends. I have a great social life, and lots of energy to run about with my kids. We are forever having people over to lunch or dinner, or going out to picnics.

Before diagnosis and a gluten-free diet this wasn't true, and life was challenging. You couldn't pay me to go back to my life before, even with all the extra planning, and initial awkwardness while everyone gets used to a new way of doing things.

I don't dismiss how hard it is to start with, but with a positive attitude, and lots of research it can be done.

I am still relatively new, gluten-free since September 12, other eliminations since January 13.

I hope others can make it work too :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#12 dilettantesteph

 
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Posted 17 June 2013 - 05:50 AM

I get down and feel lonely sometimes too.  It is hard when so many social occasions center around food.  You can change your activities to ones that don't.  Take up a musical instrument, join a knitting circle, join a book club at your local library.  Have social activities at your home and provide gluten-free snacks.  It just takes some time to adapt.  You will get there.


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#13 notme!

 
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Posted 17 June 2013 - 06:57 AM

 Take up a musical instrument, join a knitting circle, join a book club at your local library. 

being gluten-free for a few years has cleared up my brain - it's frustrating to not be able to concentrate or to use all your energy on doing the 'necessities' - this past sunday, i found myself counting in church 4/4 time - hmmm!  i forgot i used to be able to read music!  maybe i still can  :)  maybe it's just been lost in the fog for a while.  i also like to garden but i was too tired all the time - now i am killing plants like a boss (J/K lolz) i can actually get out there and weed.    <i know, it's a dumb thing to be happy for - extra *work*  yayyy....

 

hang in there, buddy, and anybody who feels overwhelmed.  even small victories are still victories.  


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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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#14 gatita

 
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Posted 17 June 2013 - 11:49 AM

BZBee, so sorry you're feeling this way. I've had a few of those moments...

 

I agree with some of the other posters that the more we project the idea that this isn't stopping us from living life to the fullest, the less others will freak out about it and exclude us. (I admit I am very, very blessed by friends and family who keep including me even if I can't eat their food sometimes.)

 

I sure hope you can convince your family that you want to be included and that celiac is not the plague!


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Diagnosed with wheat hates me 4/13


#15 Fire Fairy

 
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Posted 18 June 2013 - 06:22 AM

(((HUGS))) Before I was diagnosed I suspected I was dying. My best guess was a brain tumor. (the only symptoms I cared about were the neurological ones I had others but they didn't terrify me) My best friend and I met for lunch twice both times I wanted to tell her how scared I was, get her support, her thoughts on what I should do, and tell her what to do with my belongings should I die. Both times I didn't tell her because I sensed she too needed to tell me something and I feared for her so I kept my mouth shut. Turned out she was having an affair with my other BFF's husband. She never told me, I guess because I was holding back my secret she held hers as well. When the poo hit the fan I was so sick I couldn't cope at all. Our entire circle of friends fell apart. The only one I kept was the one who lost her hubby. I regained one of the others years later after I got well. Since then, since recovering from Celiac I have made new friends who are supportive and fill my heart with joy. I have a new life and new hope. You can too, it won't be easy, it will take time. But we are all fighters here, we wouldn't have survived this long if we weren't. The old saying it's always darkest before the dawn was true for me, I hope your dawn is coming very soon.  

 

The social eating thing is a pain in the rear but I am always amazed by the wonderful souls who find ways to include me when I least expect it. The friends at work who have shared there fresh fruit. The friends who have actually seen "gluten free" printed on something and bought it for me to try. The friends who post links to gluten-free foods and recipes on FB just for me. :) Sure I still look like a drug addict when the boss orders pizza for everyone. But it's okay I've got a locker full of Mrs Mary's Pumpkin Crunch, Banana Chips, sunflower seeds, and always some sort of power bar in my purse. I can cope.


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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown




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