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kristenloeh

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So, I started my new meds today and after about an hour, my heart was pounding so hard and fast I thought it was going to burst out of my chest, that's in addition to the same GI side effects as the other one. I'm going in today for my thyroid tests and am going to stop by my endo's to tell her and see what she says. Looks like surgery may very well be in the future for me. Shiza.


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

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So, the Endo has taken me off of the prolactin meds, and I have a surgery consult in about 2 weeks. So I guess I'll going under the knife sometime this year. Wooo.


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

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Sorry you are going through this. I hope you get news on the surgery soon. I remember reading somewhere that celiacs can respond differently to meds, something to do with absorbtion. Maybe someone here might have some information or guidance.

Some days I wish all you guys lived around the corner so we could help each other out and pop by for coffee.

Hugs Mw x


- 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 hidsmile2t.gif

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So, I started my new meds today and after about an hour, my heart was pounding so hard and fast I thought it was going to burst out of my chest, that's in addition to the same GI side effects as the other one. I'm going in today for my thyroid tests and am going to stop by my endo's to tell her and see what she says. Looks like surgery may very well be in the future for me. Shiza.

 

 

Dearest Kristen,

 

I am SO sorry the meds didn't agree with you. I know how frightening this is. Please remember that you are in the hearts and prayers of everyone in your forum family and everyone who knows you. I still believe with all my heart that 2013 is going to be a good year for all  (hear that Universe?) of us. So please hang in there and remember you're not alone (You either dear Rach).

 

Sending you extra love, healing hugs, positive energy, and prayers,

Loey

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Sorry you are going through this. I hope you get news on the surgery soon. I remember reading somewhere that celiacs can respond differently to meds, something to do with absorbtion. Maybe someone here might have some information or guidance.

Some days I wish all you guys lived around the corner so we could help each other out and pop by for coffee.

Hugs Mw x

 

Boy do I ever agree hugs, healing, coffee and  gluten-free cookies!

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Just checking in to see how you're doing. I hope you're feeling better. Continuing to keep you in my thoughts and prayers!

 

Love & Healing Hugs,

Loey

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Thanks, I'm okay. I break down day to day, mainly because I'm just SO tired of being in pain and not having a life because of it. I Just want to feel and be a normal 26 year old, single girl. >.<


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

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I have my surgical consultation on April 3rd, so hoping we will know after that when we can expect the surgery to happen if the neurosurgeon says he feels confident in being able to remove the tumor. If he can't remove it, or can't get all of it, the next step would be radiation. *crosses fingers that won't be the case* 


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

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I will say extra prayers that day (I pray for you daily) that whatever the next step is will be the safest  and most medically sound option. Please know you are not alone and that this forum is a pretty amazing family. I don't know what I'd do without all the wonderful folks here giving love, info and constant support.

 

Sending lots of positive energy, healing (((hugs))) & love,

Loey

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I will say extra prayers that day (I pray for you daily) that whatever the next step is will be the safest  and most medically sound option. Please know you are not alone and that this forum is a pretty amazing family. I don't know what I'd do without all the wonderful folks here giving love, info and constant support.

 

Sending lots of positive energy, healing (((hugs))) & love,

Loey

 

Well said....you remain in my daily prayers...

 

Big HUG :)


-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 :)

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I will say extra prayers that day (I pray for you daily) that whatever the next step is will be the safest  and most medically sound option. Please know you are not alone and that this forum is a pretty amazing family. I don't know what I'd do without all the wonderful folks here giving love, info and constant support.

 

Sending lots of positive energy, healing (((hugs))) & love,

Loey

 

 

Yes! What Loey said so perfectly--sent from me , too! 

hugs, IH


"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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So! Just got home from my surgery consult and they are getting me in on Tuesday for the surgery! Holy crap!! Freaking out!!


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

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So! Just got home from my surgery consult and they are getting me in on Tuesday for the surgery! Holy crap!! Freaking out!!

 

 

Well...that was quick!  Maybe this will help? 

 

Get your laundry and bills caught up and get this taken care of!  I will be thinking of you.


 

 

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All the very best for surgery, I will be thinking of you Tuesday x


- 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 hidsmile2t.gif

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All positive thoughts sent your way!! 


"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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Sending positive thoughts, constant prayers and healing (((hugs))). We'll all be thinking of you and love you dearly!!!!

 

Loey

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Good luck for Tuesday xx


- 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 hidsmile2t.gif

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Thanks guys! Check in is at 11:30am tomorrow! I'm going to be bringing my laptop with me so I can post on here afterwards :)


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

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Thanks guys! Check in is at 11:30am tomorrow! I'm going to be bringing my laptop with me so I can post on here afterwards :)

 

I'm keeping you in my thoughts and prayers every minute today!

 

Sending you positive energy, healing (((hugs)) and lots of love,

Loey

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Just saw your status update.

Early days, look after yourself.

Massive best wishes for fast healing and fantastic outcomes

Mw x


- 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 hidsmile2t.gif

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So, I'm back home from the hospital. The surgeon was able to get all of the tumor, despite my unusual amount of blood which made it harder to see. He was able to preserve about 80% of my gland and my prolactin went from a level of 60 (three times the normal) and down to 2! I look pretty beat up right now. Bruises under my eyes and the surgeon got a few chunks of my nose off (which I'm REALLY pissed about and hoping it heals back okay). I'm still heavily medicated as I am having a hard time with the post surgical pain and nausea. Nose keeps bleeding like CRAZY when I bend forward slightly and insanely congested with icky blood clots, but I'm hanging in there. Thank you ALL for all the well wishes and being there for me. It has meant more than you will ever know to me :) 

 

<3


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

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That is such good news, that he got the entire tumor, but I am sorry :(  he had to beat you up a little bit to get there.  Hang in there - it can only get better and better from now on :)   And no forward-bending!!!


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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And get lots of rest and make people do things for you.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Wish I didn't live across the country! So glad they got it all. I hope you have someone taking care of you. Continuing to keep you in my thoughts and prayers.

 

Sending extra healing (((hugs))) and lots of love,  :wub:  :wub:  :wub:

Loey

 

P.S. you're still adorable no matter what they did to your nose. Noses are fixable. Thank God they go the whole tumor!!!!

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