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Celiac Cost Me Everything


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109 replies to this topic

#1 ravenwoodglass

 
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Posted 22 August 2011 - 04:13 AM

The long years I spent undiagnosed cost me dearly. I lost all my freinds and family has pretty much turned their back on me. Now I have no one. I lost my only freind yesterday. My little dog was the only one I had. He was the only one I could talk to. The only one who would go for walks at the lake or keep me company in the yard. The only one who was always there for me. I tried to call my kids but they didn't return my call. One ring, go to voice mail. Which I know means they saw who was calling and chose not to answer. Don't know if I will get a call back or not. One of them has even told me they forgive me for being so sick for so long. They 'forgive me' like I did something wrong or chose to be ill for most of their lives. I did the best I could but it was never good enough.
Pooh was all I had. Sometimes I wish I was never diagnosed as the pain would be over by now. I get so jealous of folks who are diagnosed after only been ill for a few months. They still have a life ahead of them. Sometimes I feel like I am just living waiting to die. I have nothing and no one. It hurts so much.
Sorry for the depressing post I just needed to get it out.
  • 1
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)

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#2 alex11602

 
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Posted 22 August 2011 - 04:21 AM

((((hugs)))) I am so sorry that you are going through this. There isn't really anything that I could say to make it easier, but I just wanted to say that I think you are hear to be an inspiration. Reading your posts on this forum has given me a sense of hope about getting well when it seems bleak so thank you. And again I am so sorry that you are having to deal with this.
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#3 Roda

 
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Posted 22 August 2011 - 04:44 AM

I'm sorry raven, I know loosing a beloved pet is a hard thing to go through. I also lost a dog several years back. I had to have him put to sleep. I cried so much. I just wanted you to know that you have our support in this difficult time. Alex11620 is right you are an inspiration to so many people on this forum, especially the newly diagnosed. Your kind words and wealth of experience and information help so many. I know they did when I fist came on here almost 3 years ago. I will be thinking of you.
  • 1

Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 beebs

 
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Posted 22 August 2011 - 04:45 AM

((((hugs)))) I am so sorry that you are going through this. There isn't really anything that I could say to make it easier, but I just wanted to say that I think you are hear to be an inspiration. Reading your posts on this forum has given me a sense of hope about getting well when it seems bleak so thank you. And again I am so sorry that you are having to deal with this.


I agree.

Ravenwood - you are always the first to help the newbies try and figure things out. I am grateful to you for all your advice on here. I am really sorry your dog passed away. And I am sorry you are feeling so sad.
  • 1
HLA DQ8, gluten-free since January 2011

#5 kareng

 
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Posted 22 August 2011 - 05:14 AM

Oh Raven! I'm so sorry about your dog! We can't walk with you but we are still here for you.
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LTES

 
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#6 oceangirl

 
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Posted 22 August 2011 - 05:20 AM

Ravenwood,

I am so sorry for all your sorrow. You have helped me so much over the years and I want you to know I see how much you help others on this board. Kids are selfish sometimes; maybe they will come around and realize most parents do the best they can. I come from the philosophy (Read Dr. Ross Greene/website:Livesinthebalance.org)) that people do well when they can and do not when they have unsolved problems (or a missing or lagging skill).

There is nothing I could say to ease your pain but, without really knowing you, (as no one really "knows" one and other on the computer, eh?), you seem such a caring person, deserving of love and happiness.

As for losing a "pet", especially having to be involved in their passing, I have an enormous pet family and always have; consequently, I've also buried far too many. This year we had to put down my absolute favorite coon cat of all time, Sam, more like a spirit guide than cat, really, and I don't know if I'll ever get over it.

Love to you and healing energy and hope for peace,
lisa
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#7 Bubba's Mom

 
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Posted 22 August 2011 - 05:36 AM

Raven..I've onl;y been here for a short time, but want you to know I'm so thankful you're here. You're always so compasionate and helpful to others.
I lost a dear basset hound 2 months ago. I know what it's like to have that unconditional love and what it's like to lose it. My family is very much like yours. Very wrapped up in their own life and too busy to answer calls. It's hurtful, but that's a flaw in them, not you!

I know it's not the same, but wa're here for you.
(((hugs)))
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#8 lynnelise

 
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Posted 22 August 2011 - 05:59 AM

I'm so sorry to hear about your dog! It's so hard to lose a close companion and my heart breaks for you!

I am also sorry to hear your relationship with your children was strained due to illness. Sadly it seems a lot of young people seem to blame their parents for every little thing these days. I'm 33 and it seems like my friends are just now at the age where they are starting to realize their parents did their best! Some people never realize and will continue a cycle to blame everyone else for their problems. You couldn't help being sick and they should be able to realize that! Resenting you for something beyond your control isn't fair!

You have tons of people here who care for you and love to talk to you! You've helped me and everyone on this board too many times to count! Hang in there! We're all here if you need to talk!
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#9 luvs2eat

 
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Posted 22 August 2011 - 06:03 AM

I am so sorry. Losing a pet is no less sad than losing a family member, imo. They ARE our family.

Count me too in the group who has appreciated your posts/advice/kind words.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#10 SarahJimMarcy

 
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Posted 22 August 2011 - 06:27 AM

I am so sorry for your loss. Such a blow. Don't feel alone. All of us in this forum send you our very best.
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Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#11 mushroom

 
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Posted 22 August 2011 - 06:30 AM

We are your family too, and we are here for you, through thick and thin, through pain and loss, through feelings of abandonment and loneliness, we are here for you. While there is little we can do to console you in your loss, you can know that we are sending our love and healing thoughts and prayers, wrapping you in our cyber arms, hugging you, thanking you for being there and being you. Know that you are loved and cared for, admired and respected, and you can always turn to us, as you have done, for help and support. You will sorely miss your wee companion and I am so sorry for your loss, as these companions are so special in our lives and loves. Remember him with love and affection, for the difference he made in your life, and know that you have made a difference in the lives of so many others.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 Diane-in-FL

 
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Posted 22 August 2011 - 06:45 AM

I feel so bad for you....losing a pet is SO hard. And having family and friends who are not supportive must be awful. They "forgive" you for being sick??? That is beyond unfair.

((((HUGS!))))

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Gluten Free since 2010

#13 Reba32

 
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Posted 22 August 2011 - 06:58 AM

Raven, I am so sorry for the loss of your beloved dog. And I am sorry that your family is so unforgiving. {{{hugs}}}

Just this side of heaven is a place called Rainbow Bridge.
When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable.

All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....

Author unknown...
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#14 ravenwoodglass

 
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Posted 22 August 2011 - 07:28 AM

Thank you everyone. He was so special, at least to me. My house seems very quiet now. I know I won't get over this quickly but I will get over it. There is no one to eat that last bite now or laying on the back of the couch waiting to do a happy dance when I come home. He got me through the last 4 years of undiagnosed physical hell and was just as happy to play catch on the bed as to play it outside. I have my kitties but somehow it just isn't the same.
Thank you all for your thoughts and prayers. You all help me keep going on more days than you know.
  • 1
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)

#15 chasbari

 
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Posted 22 August 2011 - 07:34 AM

The long years I spent undiagnosed cost me dearly. I lost all my freinds and family has pretty much turned their back on me. Now I have no one. I lost my only freind yesterday. My little dog was the only one I had. He was the only one I could talk to. The only one who would go for walks at the lake or keep me company in the yard. The only one who was always there for me. I tried to call my kids but they didn't return my call. One ring, go to voice mail. Which I know means they saw who was calling and chose not to answer. Don't know if I will get a call back or not. One of them has even told me they forgive me for being so sick for so long. They 'forgive me' like I did something wrong or chose to be ill for most of their lives. I did the best I could but it was never good enough.
Pooh was all I had. Sometimes I wish I was never diagnosed as the pain would be over by now. I get so jealous of folks who are diagnosed after only been ill for a few months. They still have a life ahead of them. Sometimes I feel like I am just living waiting to die. I have nothing and no one. It hurts so much.
Sorry for the depressing post I just needed to get it out.


I can relate to so much of your pain and I cry for you a bit today. You have been one of the very important people in my life as I have struggled to recover from this. You are an angel here on earth and I only know you through this forum. Pets are family and I understand your loss. Prayers from here to there for you.
Chuck
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