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"it's All In Your Head!"


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#16 IrishHeart

 
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Posted 05 October 2012 - 09:43 AM

Guys, I even "played the game" and went to a psychiatric doctor so she could give me some xanax so I could get some sleep. I had raging insomnia and my PC doc wanted me to consult with her. Okay, sure.

I just kept telling her, "This isn't like me, honest. There is something really wrong with me and no one can tell me what it is".

She said to me "You don't have a clinical psychiatric problem, but you do have significant pain. This would make anyone depressed."

Then she said these words "Do you have food intolerances by any chance"? I went and had allergy testing done and a celiac panel. All negative. I did not put it all together until another year later. I test negative on blood panels, like many celiacs do.

After my DX, I called her and told her it was celiac all along causing anxiety and depression and that often, some even have panic attacks. She said she treated so many patients with these issues and never thought of celiac as a culprit and from then on, she was going to test them all for it.

I hope she has followed through with her promise.
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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


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#17 Perspective

 
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Posted 06 October 2012 - 03:43 PM

It took 7 years before I was diagnosed with Endometriosis. I even had an Indian doctor, who was filling in at the time, tell me that the pain I had was because I had experienced pre-marital sex. I should go to Jesus for forgiveness and I would be healed. This was a leading clinic in Atlanta, Georgia! I was raised in the church. No amount of prayer stopped the progression of pain I have experienced through the years.

I went to Dr's for years until finally my family Dr. told my OBGYN to schedule an exploritory surgery, or HE would. I was in the next Monday. They found the problem.

After 5 years of being married and complaining about such terrible pain during menstruation and other problems, my husband never believed me really. In a panic and in more pain than I could stand anymore, I drove myself to the emergency room, crunched over the wheel the whole way. They sent me home with a valium. Finally, several months later an OBGYN did a surgery. He discovered that my bladder, colon, right ovary, stomach, uterus, and gall bladder were all bound together by adhesions (thick scar tissue)and my colon was almost completey constricted. Every time I had my menstrual cycle EVERYTHING burned and pulled because of this. Only then was my husband a bit understanding when he found out what was really going on. On top of this, Endometriosis.

I am just discovering the links to gluten. I have discovered how good I can feel without gluten and they are testing me for this. Along with pains of all kinds in my body, arthritis pain, extreme exhaustion, swelling, constant bowel problems, infertility, and a lot of endo pains, what amazes me most of all; I still go to work every single day and work my butt off. It sucks, but I do it. What sucks even more is the silent suffer. No one even really knows or can even comprehend how much pain you actually have to put up with, how much you really have to do in order to function. But you do it. You just do.
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#18 IrishHeart

 
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Posted 07 October 2012 - 06:19 AM

No one even really knows or can even comprehend how much pain you actually have to put up with, how much you really have to do in order to function. But you do it. You just do.


Your post moved me to tears. I can honestly say I "feel your pain" and frustration because I lived it. I had a total hysterectomy because of the mess I was in. I could never carry to term.
It is a shame your GYN missed this simple diagnosis for so long and that anyone doubted your level of pain. Sorry, honey. :(

There are many GYN issues, including endo and painful periods, infertility, frequent miscarriages, delayed menarche and early menopause associated with gluten and celiac.

http://www.ncbi.nlm....pubmed/21840904

http://www.ncbi.nlm....pubmed/19400413

http://celiacdisease...dometriosis.htm

http://www.ncbi.nlm..../pubmed/7988065

http://www.ncbi.nlm....pubmed/20017709
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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


#19 Slr38

 
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Posted 07 October 2012 - 11:14 AM

Wow, reading these posts actually made me cry. I can relate to so many of your stories. I have been tested for so many things and not much has come up. I am going to do a home test this week and regardless of the results, ask the dr. to do some more blood work to screen for celiac disease.

My sons' pediatrician routinely screens every child for Celiac Disease whether they have symptoms or not. I really have to take my hat off to him for doing this especially after reading more about doctors and not diagnosing Celiac Disease.
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#20 megzydee

 
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Posted 05 June 2013 - 08:57 PM

This is so perfectly written. In the sense that I fully understand, I can fully relate...and it made me cry. I just went through all of this. I'm still going through it. I could relate to every word you wrote. I'm glad that there are people like those of us who fight even when we're down so far and for so long...because we fight for answers, we are able to help others and spread the knowledge. But this...your post made me cry...out of sadness AND happiness. Sorry for your loss of your dad, sorry for the crummy stuff you went through, sorry for what your husband had to see you go through....but happy that you were able to figure it out and that you fought for your life. I hope you continue to heal well! 

 

As I was dying a slow death for nearly 3 years, I wrote in my journal : "I am forgetting things and it scares me.
I feel so sick, tired, and in horrid, excruciating pain. What the hell is going on? I'd rather be dead than live like this!" (but I did not really mean it, apparently, because I kept fighting for an answer.)

I cried a lot (no, more like wailed) from the bone/joint and muscle pain and burning nerve pain. Tests revealed nothing. MRIs, EKGs, EMGs--all normal. (but those tests do not find small nerve fiber neuropathy, which celiacs often have)

But I wonder how many people are in mental health wards because their brain function was affected by celiac. I wonder how many people are given a fibromyalgia DX and left undiagnosed for celiac. My doc and I have discussed this and we speculate... millions? I did not even tell people half the stuff I was experiencing for fear they would think me mad. But when a few other celiacs told me they also had these bizarre symptoms, I felt validated. And sad for them-- because they were told they were making it up. As I suspect the dozens of doctors I saw thought about me (really? who "makes up" a 90 lb. weight loss?? hair loss? vitamin deficiencies? dehydration? migraines?) I did not tell them I could not drive or cook or read much anymore. My brain was that messed up.

I was burning from mouth to rectum and here is what the GI's NP yelled at me: "Take these drugs. It's "just GERD". You don't have sprue. The test was negative."

And I told my sweet hubs: "Something is very wrong with me". (He could see it; he helplessly watched me deteriorate and quietly begged doctors "Do something. I just want my wife back.") and I swear I felt my heart crack hearing him say those words.

But the doctors said: There's nothing wrong. Just osteoarthritis and some degenerating discs.

Get some exercise!
Do some volunteer work!
?? huh??

I can't even dress myself or walk the length of my driveway without gasping for breath. I had to stop going to the gym because I was unable to walk a treadmill because I could not feel my feet or hands anymore.

You're just sad, anxious and depressed (not my personality at all)
you're anorexic (me? I was FAT! but, then I wasn't. But,oh how I once loved food)
you're just grieving (my beloved Dad had just died)
you're menopausal (I had a hysterectomy years ago)
you have IBS and GERD (no, I do not)
you have Fibromylagia (nope)
you have spondyloarthropy (definitely not)
and maybe 10 other syndromes

No, I don't (I said to myself).

I heard "take these drugs" - see you in six months (there's a box of drugs in my closet I tried and had side effects from and refused to take)

Get a scooter & accept your fate!!
and my favorite: It's "idiopathic".

No, it isn't. It had a REAL CAUSE.

When I figured it out myself and finally was Dxed, I wrote to a few of those doctors. They don't care and they will never apologize.


I want to shout from the rooftops: there WAS TOO something very wrong with me (told you so tongue.gif ) and I knew it !! and I would not go down without a fight.

As for family members, they saw me dying and so, they do not doubt it's "real" , but this does not convince them to be tested themselves, despite their obvious symptoms.

I know my Dad died from this thing as well as I know my own name and I am angry that no doctor--at the prestigious Lahey Clinic--could see it for 8 years. He had dozens of blood transfusions for severe anemia and GI issues his entire life, and I am filled with guilt that I could not figure all this out in time to save him.

So, instead of letting the anger eat me alive and rob me of any more days, I choose to channel all the anger (and mistrust for doctors) into something positive.

I try to reaffirm to others who are seriously ill and losing hope that it is not "all in your head". I believe you.


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#21 IrishHeart

 
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Posted 06 June 2013 - 12:11 PM

This is so perfectly written. In the sense that I fully understand, I can fully relate...and it made me cry. I just went through all of this. I'm still going through it. I could relate to every word you wrote. I'm glad that there are people like those of us who fight even when we're down so far and for so long...because we fight for answers, we are able to help others and spread the knowledge. But this...your post made me cry...out of sadness AND happiness. Sorry for your loss of your dad, sorry for the crummy stuff you went through, sorry for what your husband had to see you go through....but happy that you were able to figure it out and that you fought for your life. I hope you continue to heal well! 

 

Hi Megzydee,

I appreciate your kind words and yes, I am still healing, but I have come so far and I am grateful for every day.

I am not at all the sick and dying woman I was. I was able to return to the gym after 2.5 years of rehabbing my wasting painful muscles and it feels good to be able to do "normal things" once more! :)

 

I am sorry that you, too are going through this and I hope you get answers soon so you can heal too.

 

If there is anything I can do to help, please call on me.

Welcome to the forum!

IH


  • 0

"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





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