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I Can't Stop Weeping...


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#1 uz2bcul

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Posted 05 March 2011 - 01:20 PM

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?
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#2 Jestgar

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Posted 05 March 2011 - 01:37 PM

Rearranging your entire life is a hard hard thing. Your feelings are completely normal and something almost everyone goes through.

I know it's overwhelming and frightening (and maddening and scary and humorous and all kinds of feelings) but it does get easier with time. You find ways to make it work for you, whatever your lifestyle.

Hang around and read about how other people cope. And welcome. :)
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#3 IrishHeart

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Posted 05 March 2011 - 01:52 PM

Honestly, I have felt so horrible for so long, in excrucaiting pain , so I am relieved to know I will feel better.

But YES!! I am pissed off and I cry and I get frustrated and then, I think how crippling and disabling and life-stealing this has been and I am grateful there's a way to make that hell stop.

Te hardest part was trying to figure it all out (I made a lot of mistakes at first because my BRAIN was so messed up ) but now, it's not that big a deal.

Mostly because now, My brain works again!!yaaay!!

You will grieve-- cry, shout, be mad!!---and then, you will just do it because your very life depends upon it.

There's a lot of help and hope on here! Hang tough--we are all here for you!! :)
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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


#4 Loey

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Posted 05 March 2011 - 02:56 PM

I am the worst dieter in the world. I am absolutely crushed by having to admit that I have to change my life and my habits. I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?


This disease sucks and you have every right to feel all of the emotions you are going through. Finding this forum was the best thing that's happened to me since my diagnosis last June. It's made up of the kindest, most generous and intelligent people gathered in one place. You can always come here to vent and know that no one will judge you. You're not alone in this. Hang in there!!! Feel free to PM me if you need to vent one-on-one.

Loey
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#5 a1956chill

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Posted 05 March 2011 - 02:59 PM

I LOVE being low maintenance. I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad. Did anyone else just feel mad and sad and exhausted by this whole thing?

Let me just say OH YEAH!!!!!! I am not quite <_< as angry as I was,, mostly now it is sadness I feel ,grieving a loss, of time,health ect...., :( but even that is getting better,,,hang in there ((HUGS))


As far as low maintenance,, what is lower maintenance then : throwing some meat in the crockpot in the morning and at dinner fixing some veggies and fruit for dessert??,,, a new way of thinking for sure, but this can be as low maintenance as you want it to be.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#6 ravenwoodglass

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Posted 05 March 2011 - 03:28 PM

It is hard at first but once you start seeing the results it will be worth all the trouble. You may also be going through a bit of withdrawl as well as the greiving process so take it easy on yourself. Treat yourself to stuff you enjoy whether it is a long walk, a movie or a good dose of chocolate. Cry when you need to and ask any questions that come to mind. The only reason so many of seem so 'matter of fact' about it is because we have been doing this for a while and we have seen the positive changes. But most of us have gone through all the feelings you are right now. Hang in there.
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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 zus888

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Posted 05 March 2011 - 03:36 PM

Been there, done that. I haven't started the diet yet, but I will be in the next few days. But I've been BITTER. Very bitter. I'm mostly over it now. I had to basically go through a grieving process in order to move forward.
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Suzanna

#8 Gfreeatx

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Posted 05 March 2011 - 03:48 PM

Definitely you need to let yourself go through a grieving process. When I first was diagnosed it took me at least three or four months before I didn't have a good cry every few days, but now I'm finding I am so much happier. I try to focus on all the great things that have come from my diagnosis, like not passing out from my heart condition on a regular basis. It's so true what everyone says on the forum, it does get much easier. Hang in there!
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#9 love2travel

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Posted 05 March 2011 - 03:55 PM

Been there, done that. I haven't started the diet yet, but I will be in the next few days. But I've been BITTER. Very bitter. I'm mostly over it now. I had to basically go through a grieving process in order to move forward.


Me, too. I feel robbed. :angry: My husband and I travel all over the world on culinary journeys and that has changed dramatically. :( It's not fair that I as such a major foodie has been dealt such a crushing blow. <_< I teach cooking classes for crying out loud. And I felt fine before finding out I have celiac disease - better than I do now so that seems doubly unfair. Now I am drained and when I was eating gluten I was full of energy. My mind is foggy and before I felt much more clarity.

In order to keep going I tell myself that my diagnosis could possibly have saved my life. :) But I'm not going to lie - it is painfully difficult.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#10 notme!

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Posted 05 March 2011 - 04:07 PM

i felt that way at first, too. i still have little meltdowns but they are less frequent. yep, it really sucks with a capital SUCK. because (the hardest part for me, anyway) is that it is forever. in the beginning i was so angry and i was trying so hard to stick to the diet but i wasn't feeling any better at all. all a waste of time and effort! plus, i was making my family go through it as well. i didn't purge my pantry at first (denial) i didn't keep a food journal (nothing matters because i didn't feel any better) i bought alot of processed stuff that was labeled gluten-free but tasted like crap! but then one day, i woke up and didn't have to run to the bathroom twelve times an hour! i didn't feel like turning over and going back to sleep! i made a list of things to do for the day because i felt energetic (wow, what a feeling that i forgot) and i started gaining back my body weight - i have put on 20 lbs and have not gone up a size yet, which was probably all muscle weight - also, if i do chores around the house (washing windows, etc) i don't feel like i've been hit by a truck for days afterwards. that has just come back, i've noticed, in the past few weeks or so. and i've been gluten free since late july of last year. so hang in there. i cry a little for everybody who comes on here for the first time because i remember how i felt in the beginning - overwhelmed and mad as hell and sad all at once. i stood in the supermarket for an hour then i bought nothing and went home and cried. it will get easier :) i plomise ;) you are in the right place: nobody understands us like us :)
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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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#11 eatmeat4good

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Posted 05 March 2011 - 04:11 PM

I'm several months into this and I'm still pissed off that it took 7 years of complete and total self-destruction and a bunch of ridiculous diagnoses to finally realize the answer was at my fingertips!!??!!

I'm glad I found it, but now several months into this, I wanna know where do I go to get the last 7 years of my life back? Yeah, you are not alone. I loved being the one who never ever "special ordered". I sure ain't that girl now!

But knowing what caused the sores and my brain to be crazy is worth everything to me.

So we fight the good fight...because we have to. But there are some days....

DH and neuro symptoms were killing me. I'm thrilled to know there was an answer after all those years of hell.

Don't know how long you have been suffering, but I sure do hope you heal fast.

Venting helps. For all those years I was obsessed with "What the hell is WRONG with me?" Then when I found it I went through, "Why the hell didn't I figure this out?" And now that I'm healing it's like, "WTF? You mean I really can be WELL as long as I follow the Celiac rules? Cool!"

It is beyond wonderful not to have despair and illness and to be in control of my life again!

You will have those days too.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#12 Judy3

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Posted 05 March 2011 - 04:15 PM

Going gluten free is not the easiest thing in the world to do. Our society is overloaded with gluten containing foods. I've been gluten free for 4 months now and it does get easier with time. I'm good at home, I can find all the foods I want and need at my local grocery store. The only time I have an issue is eating out which occurs quite frequently for work or just a get together with friends. Watching television has become a pain too.. All the commercials!!! Just the other day I spouted "why does everything have to come on a bun or be breaded?" A little period of feeling sorry for myself but then I come out here and see that I'm not alone and it makes it easier. Not to mention that I feel 100% better than I have my entire life so that's a major plus.

Grieve as you must, get mad, get sad, but don't let it stop you from getting on with your life. Gluteny food is just one part of life. There is so much to be enjoyed that doesn't pertain to food that I feel dumb sometimes for having fits about missing gluten. Today, I went to lunch with two of my friends and the only thing on the menu that I could even try to eat was a salad with grilled chicken, 'the only thing' and I had to tell them to leave the croutons and breadstick in the kitchen but you know what? We had a wonderful time catching up and in the end it didn't matter what I had to eat. I saw my friends and enjoyed conversation and laughter and love. Perspective... that's what needs to change. Focus off the food and onto the real reason we gather together... :0)

Peace to all
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*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#13 angelwingsmama

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Posted 05 March 2011 - 04:49 PM

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.
My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.
Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.
Thank you and sorry if it sounds like I am whinning.
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#14 nmthommy

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Posted 05 March 2011 - 05:10 PM

I'm also low maintenance. I couldn't believe I would have to "think" about what to make and "PLAN".
I've only been doing it 2 weeks and I have to say it's not too bad. It's actually less fuss 'cause you eat simple. No big complex meals.
I hope you find comfort knowing you are not alone.
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#15 nmthommy

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Posted 05 March 2011 - 05:12 PM

<_< I am glad that I have found this forum. I have been so confused since I was told that I have Celiac DIsease. My Mom just passed away from Pancreatic Cancer in October and she had Celiac Disease for ten years. She was diagnosed in July of 2010 and was told she only had 4 months. That was the worst time of my life. I miss my Mom sooooo much. I wish she was here so we could go through this together.
My thing is that she lost lots of weight due to the Celiac Disease and I am the opposite. I have been told for years that I have Irritable Bowel Syndrom. I need to pay attention to what I eat. That was all I was told. Well it never went away then they did the Celiac Disease test and ah hah guess what. But I don't loose any weight at all I just keep gaining and loose a couple of pounds then gain right back. I was also told that I have swollen Lynph Nodes in my chest area just above my stomache. If I follow a Gluten Free Diet it controls the swelling.
Has anyone else had these symtems. I need some help trying to figure it all out. I am having alot of trouble sticking to this diet because I travel all the time for work so alot of the times I eat while I drive.
Thank you and sorry if it sounds like I am whinning.

I don't have a problem thinking of it as a diet. This is a life choice. It is poison you are putting into your body. For me that makes all the difference.
I say "oh, look there is cake. Yum. Oh that's poison." It no longer feels like I'm deprived.
I hope this helps.
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