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Grief


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#1 Googles

 
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Posted 24 August 2010 - 11:18 AM

I feel like I'm stuck in the grief process. And I'm back to the anger stage. I really thought that I had accepted my diagnosis and that there was nothing that was going to make it go away. But I am just so angry. And there is no one for me to be angry at. Except myself. It's my stupid body that can't work right. It's my stupid body that causes me to be excluded from social activities that involve food (which is pretty much all of them). Even when I tell my friends to include me, even if I wont be able to eat anything. It's my stupid body that can't eat most of the food at the grocery store. I walked into the small store at school and was overwhelmed by a sense of depression knowing that I couldn't eat my favorite foods. And never will be able to again. Didn't I have enough problems in my life without this?

Every time I travel (which is hardly ever anymore) I'm terrified of getting sick. I'm terrified of going on a trip to a conference that is 11 hours away by car and not being able to get back because I've gotten sick.

I hate this!!!!!!!!!!!!!!!!!! I hate my life!!!!!!!!!!!!!!!!! I hate that I have to think about everything that could conceivably end up in my mouth.

I thought it would be easier knowing what was wrong the many months that I waited for all the testing to be done. Because then I wouldn't have to guess anymore. But now I just want to scream. But there is no one to hear me.

I have nightmares about accidentally ingesting the wrong food. Or more tantalizing dreams where some favorite food I can eat again. But then I wake up and am back to my reality.
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#2 srall

 
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Posted 24 August 2010 - 11:49 AM

I could be all pollyanna with a reply and say something like "At least you're probably eating a much healthier diet." But I know I know I know.
I was reading a book about Italy and wondering how I'd ever be able to travel to another country, much less one where I can't speak the language. It truly sucks. No other way to put it.
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#3 mscan91

 
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Posted 24 August 2010 - 11:55 AM

I have those nightmares ALL of the time.

Sometimes it just kills me. I watch people eating a slice of pizza or grabbing a cheese burger on the go and say "why do I have to struggle?!". And I know it's cliche... but it's really true, things could be a lot worse. I mean there are so many things my body still does for me. It limits me, yes. But I have to give credit where credit is due. I can walk, I can breathe. If you engrave that thought in your mind, the greif will let up.

God bless <3
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#4 JennQ

 
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Posted 24 August 2010 - 12:01 PM

I just went through that phase again last week and here I sit glutened :(. I am angry that I got glutened off a freaking taco salad with CC (I assume) instead of something I would truly enjoy. These past two days kind of brought me in check.

The anger hits me about every other month. Mostly around the times that there is a lot of gatherings. That's the worst. I HATE people making sacrifices for me, but then feel like total crap when I'm left out. It's a catch 22.

One of the things I try to tell myself, which seems to be pretty common around here, is it could be worse. I watched my mom die of breast cancer. It's horrible to think about that, but when I do, I remind myself that I am cutting down my chances of dying.

I just want that magic shot to come out so I can enjoy just ONE meal without worrying ;)
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Misdiagnosed for 21 years

Celiac confirmed by biopsy November 2009
Gluten free since

#5 'lynrn

 
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Posted 24 August 2010 - 12:11 PM

Wish i had some magic answers for you...I don't!!! I am really new to this myself and having a terrible time coping as well. I wish i could say that being older, wiser more educated etc...made it a lot easier...I am not certain that is true either. Experience and, I think time helps...what REALLY helps...is planning!!!!! Advance planning. I work on call, on the road, for several days at a time. i started checking out every fast food restaurant and grocery store and convenience store...planning just what I could grab. I have become pro active in eating out. I check out places in advance. I am now the person who suggests where we eat. I have phoned sooo many places and asked if they can do gluten free. I have had some real surprises too. A couple of places have been more than willing to work with me. One actually knew all about it although didn't advertise it. Yeh and I carry stuff with me. Ideal???? No but it sure beats being sick and the diarrhea etc that went with it.In most places there are safe alternatives to eat. Not what you were used to but safe. I know it is not a Big Mac but there might be a great place with stir fry and rice noodles???
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#6 ravenwoodglass

 
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Posted 24 August 2010 - 12:12 PM

But now I just want to scream. But there is no one to hear me.


We are here, we hear you, go ahead and scream.

The fear that can come with this disease and strong gluten reactions can be so isolating. I know I have been there and am still struggling myself even after 8 years. Talking to a counselor has been helpful for me. You may want to see if you can link up with one. They can't make everything go away but perhaps they can help you to learn how to cope with it.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 GlutenFreeManna

 
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Posted 24 August 2010 - 12:56 PM

I want to say it gets better, but I'm not sure if it ends. I'm 8 months without gluten. I still have days where I realize something else I can't have and it starts again. The thing that has helped me the most has been to focus on what I CAN have rather than what I can't and to look for substitutes for my former favorites. I know that's really hard when other people around you are shoveling in food without a care in the world. I find it helps to keep my favorite gluten free snacks on hand (as I discover what they are of course). The longer you do this the more you will find things you like to eat and it won't seem so bad. If gluten is your only restriction there are a ton of mainstream foods you can have. And even without gluten, dairy and soy I've found a way to cope in some situations. Just this week I was stuck at a car dealer getting my car worked on. I was only supposed to be there for less than an hour. Well the hour turned into 4 hours when they found other things that needed fixing. So I had to buy some Fritos out of the vending machine. A few months ago I would have just starved or had to call my DH to leave work and bring me food because I wouldn't have known that Fritos are, for the most part, safe (just corn and corn oil). But I had read it here on the board that they are. Surveying the vending machine there were several other gluten free snack options like Lays chips and Snickers. Not healthy of course, but better than being hungry or getting sick. I guess what I'm trying to say is that the longer you do this you will start to know what your "safe" options are and there will be fewer situations where you are left frustrated, hungry or sickened by hidden gluten. Until then continue to vent here. It helps to get the frustration out. We have been there and many of us are still there.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#8 Lindsay630

 
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Posted 24 August 2010 - 01:27 PM

I came on here to write the exact same post! I obviously don't have an advice, but if you need a venting partner, I am willing to listen as long as I can vent back :) Hang in there!
Lindsay
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#9 notme!

 
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Posted 24 August 2010 - 02:03 PM

I just went through that phase again last week and here I sit glutened :(. I am angry that I got glutened off a freaking taco salad with CC (I assume) instead of something I would truly enjoy. These past two days kind of brought me in check.

The anger hits me about every other month. Mostly around the times that there is a lot of gatherings. That's the worst. I HATE people making sacrifices for me, but then feel like total crap when I'm left out. It's a catch 22.

One of the things I try to tell myself, which seems to be pretty common around here, is it could be worse. I watched my mom die of breast cancer. It's horrible to think about that, but when I do, I remind myself that I am cutting down my chances of dying.

I just want that magic shot to come out so I can enjoy just ONE meal without worrying ;)


ha I am already contemplating ruining my annual trip to nj b/c I don't know if I can resist the pizza and rationalizing it with 'well, I'm probably gonna get glutened anyway, might as well enjoy it' :)

just this past weekend we stayed overnight at our friends' house overnight. not only did they try sooo hard to feed me only for them to name a certain ingredient (wheat, milk, blah blah...) and me to tell them ' sorry ' ughhhhh I HATE that too!!! but they are good friends (and they think their daughter needs to be tested) so I imagine they will do some research:) and things will be better. anyway, besides that I had major panic over the whole staying overnight thing. this never bothered me before!! I'm a gypsy, husband is a trucker so I'm used to being packed and ready to go. argh, I can't imagine trying to find gluten-free AND truck parking.... :(

my mom also died of cancer :( and it runs rampant in my family...
my son is a type1 diabetic and HE feels sorry for ME. I'm all about hating that, too.

scream away, sweetie... I'm in a great mood today or I'd be right there with you!
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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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#10 Skylark

 
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Posted 24 August 2010 - 02:12 PM

I feel so bad for you. I went through all this with childhood food allergies. If you think it's hard as an adult, imagine having to bring a rice flour cupcake to birthday parties because you can't have the wheat cake or dairy ice cream.

My parents got me some counseling, and a really sweet child psychologist helped me a lot. He taught me to focus on the playing, the games with other kids, and all the other things my friends had to offer besides food. After the counseling, I became the kid leading the charge away from the table and out the door to play party games. ;)

I guess what I'm trying to say is focus on what you have, not what you lost. There is grieving when you give things up, but it can subside more quickly if you go looking for other things to fill the void. I look at shopping as a challenge, not a stress. It's sort of like my own game of Iron Chef where I make great food with an ingredient limitation. Healing will come when you find a whole new set of favorite foods. Just remember that lobster, caviar, steak, truffles, brie, and fine wine are all gluten-free!
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#11 Googles

 
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Posted 24 August 2010 - 04:54 PM

Thank you everyone for listening to me scream. I know this could be worse. And I was doing quite well for a while. But this has all just popped up again. I even wen tout to eat at a restaurant with friends for the first time. But I think this conference is terrifying me. I don't want to end up sick in another country. Ugh.
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#12 CarolinaKip

 
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Posted 24 August 2010 - 05:06 PM

I spent the first weekend on the couch after being dx Celiac : ( I was so sad at first, then angry. I get sad, angry or anxious from time to time. My extended family doesn't get it much. While they had deluxe subs, I had my gluten-free sammy. I couldn't use the veggies they had because they already had pre cut on a cutting board, emptied the bag etc. I am back at work at school, teacher workdays are hard. They went out to eat at Olive Garden yesterday. Even though they have a limited gluten-free menu, it was 12:30, there was no way I was going to risk it. I ate the food I brought. It makes me very sad at times, but I don't want to miss the socializing. Smelling their Subway subs has been hard too. When they placed breadsticks in front of me yesterday I almost freaked! I had one teacher to be so nice to remove them, however my teacher doesn't want me to talk about celiac at all.

Long time gluten-free eaters, does it come a time you accept this and don't look at others food and long for it? I know I feel better gluten-free and it's posion to me, but I still have my mouth water at certain foods.
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How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.
George Washington Carver


Blood work positive 4/10
Endo biopsy positive 5/10
Gluten free 5/10

#13 Googles

 
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Posted 24 August 2010 - 10:22 PM

When people respond with "well it could be worse" it makes me angry. It makes me feel invalidated. It makes me feel that my feelings don't matter. I'm sorry that person X suffered from disease Y. That sucks. But that doesn't mean that my distress is any less. And this just comes on top of my other health issues. It just happens to be the newest one. The one I can't hide from others since so much stuff surrounds food. Or food surrounds so much stuff. I'm told I can vent and that people understand. But then I'm also told to just 'suck it up' because it could be worse. I try to reach out for support from people who have been there too. But I feel like I'm getting my hand slapped for asking for help. Yes some people are further along in the acceptance process. And I feel like I have back slid in that process. I was dealing with it really well for a while. Now I just want to hide from the world.
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#14 Skylark

 
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Posted 25 August 2010 - 12:24 AM

Long time gluten-free eaters, does it come a time you accept this and don't look at others food and long for it? I know I feel better gluten-free and it's posion to me, but I still have my mouth water at certain foods.

I'm five years gluten-free. My gluten reactions are pretty unpleasant and at this point gluten-containing things are not tempting in any way, shape, or form. I don't mind the smell of gluten things (in fact I rather enjoy the smell of Cinnabon in the mall) but there is no more temptation than there would be to eat those black, shiny, tasty-looking deadly nightshade berries out in the yard.

"It could be worse" is such a double-edged sword. It's powerful when you say it to yourself, because gratitude in any form usually feels better than anger and frustration. Problem is, it feels dismissive when someone else says it.

Googles I hope you don't mean you're getting your hand slapped here on the board. If you found my post not what you were looking for, please remember that I was desperately mentally ill from the effects of gluten on my mind and body. My anger is in a different place, at all the damn doctors who misdiagnosed me all of my life and made me horribly sick with psych meds. I had to grieve for the loss of about twelve years of my life and there is no way I can get them back.
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#15 Marz

 
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Posted 25 August 2010 - 11:26 AM

I have nightmares about accidentally ingesting the wrong food. Or more tantalizing dreams where some favorite food I can eat again. But then I wake up and am back to my reality.


You're not the only one. :/ They're not nightmares, but I have disturbing dreams where I accidently eat gluten, or I'm just innocently eating pizza in a restaurant and sort of become "lucid" and say to myself "hey, I can't eat this!" - like what the hell! And then in the dream I'm all p-d off with myself for letting myself down, and when I wake up I'm so relieved it was just a dream because holy hell I wouldn't want to have a week of feeling awful.

I also hate going to the grocery store, or the cafe's and watching people buy/eat all sorts of gluteny awesome treats.

I don't know what to suggest, except that you should try to focus on what you can eat. I've told myself I can eat any fruit I like! I go to the fruit/vege market and just buy everything in sight! Try find some non-glutenous food you can eat that you love, and spoil yourself when you feel down about not being able to eat gluten.

Hoping some others here have better suggestions :/
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant




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