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Celiac Cost Me Everything


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109 replies to this topic

#16 a1956chill

 
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Posted 22 August 2011 - 07:41 AM

Raven,
You were one of the first in these forums to reach out to me with your strong loving cyber arms and embrace me. For that I will forever be grateful. You have given me and many others in these forums so much love, support,incite and knowledge. For me personally you give me the greatest gift of all HOPE.With out that hope I would have never persevered to get my diagnoses .Most importantly you gave me hope that someday I could recover to the point of functioning (somewhat ) normally.
Those of us that waited ,and suffered for,many years before our diagnose understand the lost of family and friends. Know that we are here for you.
If you are ever in Northwestern Pa. I would love to take you for a very long walk in some of the most beautiful country side you will ever see :)

Our pets become family and we grieve their passing.Your beloved pet will always be in your heart
BIG ((((HUGS))) and much love :wub: :wub:
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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


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#17 Gemini

 
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Posted 22 August 2011 - 08:16 AM

I know this isn't going to a popular statement but when you lose a pet, especially a dog, that can be harder than losing anything else.
I have no children, possibly due to Celiac Disease as I was undiagnosed also for most of my life, but when I hear people tell me how their children
treat them later in life, after what you put into raising them, it makes me glad I never had any. I had a dog who died 3 years ago and she was my canine sole mate. She loved me unconditionally, which doesn't often happen with people, and I still miss her to this day. So I feel your pain in a big way.
It can be utterly heartbreaking. It does ease after awhile but I will miss my buddy for the rest of my life. I have yet to replace her as there will never be a total replacement for what she meant to me.

Raven, do you work? I know having a job and keeping my mind focused on that helped a lot and there are people you work with who become your family, of sorts. Yes, finding a job these days is difficult but it does help, even if it's a part time job.

Other than that little piece of advice, I am deeply sorry for your loss. God, I love dogs! They can be a lifesaver but it sure hurts like hell when you have to give them back. :(
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#18 Fancy Nancy

 
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Posted 22 August 2011 - 08:30 AM

I feel your pain. My advice would be to replace your beloved pet with a new furry friend, and soon. I have two beagles and also do dogsitting. The dogs get me through each day as I am suffering with a horrible case of DH. Dogs give you the unconditional love and support like no other. I pray you gain strength from the words of support through this forum.
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#19 Kansas

 
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Posted 22 August 2011 - 08:39 AM

Raven,
I have been learning/lurking for the past three years, and when I see your posts, I know I can rely on what you have written. You will probably never know just how many people you have helped! Please know that I care, I have an 18 year old mutt dog that saved my life when my son was killed. I do have a supporting family, but it was that little dog that really listened and was there for me, or maybe I allowed her to see how much I was hurting. She does understand. I am so sorry for your loss. You are family!
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#20 bartfull

 
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Posted 22 August 2011 - 09:11 AM

Raven, I am so very sorry. I too, think that as soon as you have had a chance to grieve for awhile, you should get yourself another dog. I know no one can replace what you've lost, but a new dog won't be any better or worse, just different.

I had a cat once who was different than any other cat I had ever had. I loved that cat so much. But when some creep intentionally ran her over, it was less than a week before I got a new kitten. She's just a "regular" cat, but she's still my buddy, and I've had her for 12 years now.

Family always gives us a hard time. Kids even more than the rest of them. Eventually, they will probably begin to understand how cruel they have been to you - especially of one or more of them develop Celiac!

But in the meantime, cry when you have to, but try as hard as you can to fill up the hours with positive thoughts. You have friends here who will keep you in our thoughts and prayers, and if you need to vent some more, we will be here for you.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#21 BethJ

 
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Posted 22 August 2011 - 09:27 AM

Raven, my heart goes out to you. I can't say more than has already been said, but you've always been there for everybody in their time of need. I know it's not the same, but we're "family" . . . doing what families should do when one of their own is hurting.

Losing my cat was harder than losing my parents. I sobbed for days when my orange tabby left for Rainbow Bridge. Some animal companions are what I call soul mates. There's something special about them and I think each of us have at least one in our lifetime. Your baby was your soul mate and he left a big doggie shaped hole in your heart.

I have a dear husband and when he's gone, I'll only have my cat family. And yes, they ARE my family. I was never able to have children like so many here but I have two stepdaughters who wouldn't notice if I was dying in the middle of the road. My cats are always there for me.

And FWIW, kitties make wonderful little listeners. They will happily listen to you and comfort you as you grieve.
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Beth in Florida

Gluten-free since 7/19/08
Alcohol free since 6/28/10

#22 love2travel

 
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Posted 22 August 2011 - 09:45 AM

Oh, Raven. I am SO sorry about your precious dog. We had to euthanize our beloved border collie a year ago and she was like the little girl we never had. Seriously. We loved her that much so I understand how devastating this must be. It must bo incredibly hard keeping on with less motivation and with an unsupportive family to boot.

I am one of those few lucky people who wasn't even sick when diagnosed. However, this chronic pain is a killer. It is unrelenting and so severe most days it hurts just to wear clothes. So I sort of can understand what you are going through on the health front. Pain/sickness/poor health so drastically changes our lives and affects all those around us.

You have been an inspiration to me, too. You are very wise and helpful. I need to make a point of telling people that more often. I appreciate you very much and wish I could be there to hug you and cry with you. Take as much time as you need to grieve. It is soooooo very cliche but really try to take one day at a time, or even an hour at a time. Please know I will be praying for you. :)
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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.

#23 Takala

 
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Posted 22 August 2011 - 09:56 AM

Oh, I am so sorry.

relatives - meh. need a pffffffffft icon.

I have outlived so many. Pets, I mean.

Let me give you the upside. If you subsequently adopt dogs from the pound, and they have a wheat allergy, (has happened to us 2x now) you will not only be the first one able to figure it out and get their hair to grown back in or their joints to stop overflexing, but you will know that it was "meant to be."

So far my "too old nobody wanted him bald dog" has alerted me to a shady character who was casing out our house, and decided to make up a story when greeted with me holding the collar of the biggest thing with teeth he'd probably ever seen, and incredibly, like something out of a stupid Lassie novel, went on a crazy barking spree this spring, until I looked out the window and saw the huge plume of smoke from a residence on fire down the road - drove down there and called in the fire department and gave them the correct address because they had gotten an earlier call with the wrong one. and got somebody to open the driveway gate and made sure they were out and accounted for. Fire department: how did you notice this, what time? me: dog going nuts and running up and down our backyard fence, staring in that direction, must have heard something. (perhaps he was anticipating the CDF planes/water bucket helicopters to show up, they like barking at that stuff too, who knows).

I got this wonderful dog from the city pound putting a plea on Craigs List pets for the "last chance time is up" type dogs, after having to take several months to mourn the loss of the sweetest puppy at about a year old, when he followed my rat hunting terrier where he shouldn't have, and we had to put him down because the injuries were so bad. I don't think you actually ever get over it, so much as stumble around for a while and then moving on. My newer dog obviously had had somebody a long time, because his manners were so good - he was found wandering around pretty starved and with his fur/skin in a really bad way, and the pound couldn't find the owners, but they did their best to bring him back up to adoptable- I wonder what happened to his original humans, (foreclosure? sudden job loss? moved away and gave him to somebody who couldn't cope?) and hope that they are okay.

We are all like this, if capable of feeling. Wouldn't want to be on the other, callous side. My relatives speak of me as some sort of exotic creature they just don't "get" - 'oh, she's an "animal" person.' They're more concerned with their white carpets and crabgrass annihilation.
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#24 Fairy Dancer

 
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Posted 22 August 2011 - 10:24 AM

Many hugs

I was diagnosed with depression and anxiety yet on a gluten free diet my symptoms are disappearing one by one. However, over the years, due to my not being well my family turned against me also and I too have no one.

I feel your pain.

I hope things improve for you x
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#25 wheeleezdryver

 
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Posted 22 August 2011 - 10:38 AM

{{{{{{hugs}}}}}}

Having been a spousal caregiver and thereby lost friends and contact with family, i understand at least a little bit.

I am so sorry to hear of the loss of your precious and beautiful doggie. Pets often have such sweet, soothing spirits.


I to, have been touched, taught, and inspired by your story and the amount of knowledge and support you share here :)

Take care :)
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Becky (me)-35yo; hypothyroid 8yrs (symptoms at least 1 yr prior); Plantar Fasciitis (PF) (tendonitis in foot) 4 yrs; ovary & softball size cyst removed Feb 2008; Sleep Apnea 3yrs; Dec 2008- realized wheat affects hormones-- went semi- gluten-free (aka, gluten lite!). Interstitial Cystitis (IC, aka painful bladder syndrome) (self dx. controlled by diet- can't have acidic foods/ drinks). July 2010-- realized there was more going on, was going to do the sensitivity/ Celiac testing, decided it wasn't worth it! Am now truely learning to live the gluten- free lifestyle!
My DH-38 yo; born w/ Spastic cerebral palsy. legally blind, uses wheelchair. back surgery Aug 2007, has continued back troubles.

#26 Hawthorn

 
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Posted 22 August 2011 - 11:04 AM

Raven (((hugs)))

I too have a strained relationship with my family, my older two children included thanks to illness. I can only imagine the pain of losing a beloved pet. I have a dog and she's been a lifesaver. Totally non judgemental, ever loving, and always pleased to see you, even when you are crying.

Be kind to yourself <3
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#27 yolo

 
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Posted 22 August 2011 - 11:28 AM

Hi Ravenwood,

You are not alone. Many here love you, and you are loved by all of Nature around you. Losing a dog you feel so close to has to be tough. When I lost my cat Omar I thought I was going to die. Its hard when family is not a real family. I know what its like to feel that perhaps someday they will come around, but cannot in any way shape or form count on it. Instead there is just bitterness and animosity on their part.

When you are up to it, I suggest you find some interest and pursue it -- make new friends, create a new life--and eventually your friends may become your new family, as many are here. I don't know how old you are, but it doesn't matter. One can always begin again, even if you are 90. I am 62 and didn't figure out that I needed to be off all trace glutens until a little over 3 1/2 years ago. I was apparently originally diagnosed when I was 4 or 5 months old, but was never told until after I figured it all out.

There is much to be bitter about. All the diseases, the missed opportunities etc. I am no longer young. However life goes on and I am learning there is much I still can do. Like write about my experiences for one thing. And reach out to new people. Perhaps create a local gluten intolerant support group. I like the idea the man from Louisiana told us all about of an emotional release support group for celiacs. Many hugs dear. You are a real trouper!

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#28 Yup

 
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Posted 22 August 2011 - 12:07 PM

Raven you are a pathfinder for those who feel lost. True friends don't abandon each other....being diagnosed has opened doors to different types of friendships and we thank you for your much needed guidance. So sorry about your pal.
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#29 ravenwoodglass

 
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Posted 22 August 2011 - 12:18 PM

Thank you everyone. I have lost dogs before but for some reason it didn't hit me as bad as losing this one. Perhaps because my kids were still young and at home and needing me. Perhaps because it was so sudden. He stopped wanting to eat Friday night and his breathing was very labored. I thank God for my vet clinic as I was able to call yesterday when he got real weak and he didn't have to suffer until today. He was bleeding internally and very old. His passing was easy and the vet was kind.
It has been a hard month or so, as they say bad luck comes in threes and Pooh passing was number 3 so perhaps things will turn around.
Your replies have been overwhelming in their kindness and it helps a great deal to know that people care. I emailed my DD this morning and told her what happened as I only left messages to call me back yesterday. She works long hours and I know she will call when she can. Families just don't seem to be like they used to be. Everyone moves so far away and gets so busy with their lives that it is easy to forget the folks you left behind. I am mid-fifties so I am old enough to remember families that all lived close and getting together at Grandmas or Aunties was something done every Sunday. I miss those days and it seems many others here do also.
Thank you all so much for being here when I needed you.
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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)

#30 AMom2010

 
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Posted 22 August 2011 - 12:43 PM

I too am so very sorry for your loss! There is nothing worse than having your constant, very best buddy leave your side. I hope you begin to feel better soon! It will get better!

I too thank thank you for all your knowledge and support on this forum, I frequently think of your words during the day and I have begun this new gluten free lifestyle.
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