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87 replies to this topic

#16 bartfull

 
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Posted 23 December 2012 - 09:35 AM

I'm late to this thread, but I can offer some encouragement. Your tumor sounds exactly like the one a friend of mine had. It was benign, but it was fast growing. She had to have surgery too. She was 50 years old at the time and came through the surgery with flying colors. Just a few days after she got home I was visiting her and freaking out when she got on a ladder to pull down some stuff in the rafters of her garage. But she was absolutely fine. And now, ten years later she is still fine.

My wish for you is that it will be as easy and successful as hers was. ((((HUGS))))
  • 0

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!

 


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#17 mushroom

 
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Posted 23 December 2012 - 10:27 AM

Most excellent news. Celebrate a benign tumor this Christmas, and you will have plenty of time to prepare for the surgery in the New Year. I am so glad for you!.
  • 0
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

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#18 JNBunnie1

 
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Posted 23 December 2012 - 01:26 PM

Woohoo!!!!
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If you're going through hell, keep going. ~Winston Churchill

#19 GottaSki

 
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Posted 29 December 2012 - 05:50 AM

Hi Kristin!

Any news from Neuro? Hoping to hear you have received more positive news :)

You remain in my thoughts and prayers for healing.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#20 kristenloeh

 
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Posted 04 January 2013 - 09:27 AM

Since the tumor seems to be in the back of my pituitary, the neurologist can't do much since "technically" it's not IN my brain. So I talk to an endocrinologist about what other tests she wants me to do, to see if it's "active" or not, (messing with my hormones and/or secreting them), and then from there, we will hopefully start having a treatment plan in place. Been in and out of the ER from migraines and sever nausea over the holidays and these last few days. Trying to hang in there. Thanks to you all for the well wishes :)
  • 0

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#21 mushroom

 
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Posted 04 January 2013 - 11:46 AM

We are all keeping you in our thoughts, hon. :)
  • 0
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

#22 Celiac Mindwarp

 
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Posted 04 January 2013 - 11:52 AM

Have been thinking of you this week. Hope those docs come through good for you, sounds like they are being thorough and getting you the right specialists. Hugs x
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#23 IrishHeart

 
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Posted 04 January 2013 - 01:18 PM

Sending all good wishes and hopes that they come up with a resolution quickly so you can stop feeling so bad.
I suffered migraines most of my adult life and they (well, I'll just say it...) absolutely suck.
((hugs)) to you.
  • 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


#24 GottaSki

 
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Posted 04 January 2013 - 01:55 PM

And another big HUG :)

Thanks for the update.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#25 Celiac Mindwarp

 
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Posted 29 January 2013 - 12:02 PM

Just spotted you back - how's it all going now?
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#26 kristenloeh

 
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Posted 21 February 2013 - 09:41 AM

I got my labs back yesterday. The tumor is active. I am very low on Cortisol, very high on Prolactin, and my Thyroid is boarderline. I start a hormone treatment soon to start shrinking the tumor and getting my hormones back on track. They are hoping that with this it will reduce if not stop my migraines. Also seeing a neurosurgeon soon to see what he thinks. I should know even more today as to what exactly will be happening with the hormone treatments.

 

Thank you all for your support, I will let you know what else I figure out today.

 

These last few weeks have been hell. Always in pain and it had finally got to me that I was a danger to myself and had to be hospitalized yesterday. 


  • 0

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#27 Jestgar

 
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Posted 21 February 2013 - 09:46 AM

So sorry.  Lots of hugs to you, and hang in there. :(


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- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#28 IrishHeart

 
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Posted 21 February 2013 - 09:51 AM

Sorry to hear this, Kristen and I send you good thoughts, prayers, and hugs as well. 

 

Hope the neuro can do something more for you. 


  • 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


#29 GottaSki

 
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Posted 21 February 2013 - 10:39 AM

Big Hug.

Along with prayers for your healing, reduction in pain and the docs that help you to have gifted hands and knowledge.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#30 mushroom

 
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Posted 21 February 2013 - 11:21 AM

Here's {{{{{hugs}}}}} amd prayers from me, too.  We're with you. 


  • 0
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




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