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#31 Celiac Mindwarp

 
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Posted 21 February 2013 - 02:34 PM

Sending hugs too, thinking of you x
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- 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

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#32 kristenloeh

 
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Posted 22 February 2013 - 09:44 PM

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.


  • 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


#33 Loey

 
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Posted 23 February 2013 - 03:31 AM

So I had an MRI the other week and they finally called me with the results. Looks like a I have a rather large brain tumor that is more than likely what has been causing my chronic migraines. Needless to say, I'm pretty flipping scared....

I go in to the docs tomorrow for more blood tests and I see my neurologist on the 26th to figure out the plan of how we are going to go about getting it removed and what not.


So just send positive thoughts my way please? I need them pretty bad right now.....

 

Hang in there honey. We'll all be pulling for you and keeping you in our thoughts and prayers. Hopefully you have the best Neurologist available.

 

Sending positive energy, healing hugs, and lots of love,

Loey

 

P.S. remember we're all here for you.  


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#34 Loey

 
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Posted 23 February 2013 - 03:33 AM

We have a bit more information. The tumor is NOT cancerous. It's about the size of my pituitary gland and it is in the back of the gland, so it's not messing with my optic or my sinuses, which is a good thing, but in a way, a bit bitter sweet, since now instead of the surgery option being easy and through my nose, they will have to go in through my skull more than likely. We do not know my treatment methods yet, but it's more than likely going to be brain surgery.

So, at least that's a bit of good news before Xmas :)

 

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

 

Please keep us posted.

 

Love,

Loey


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#35 Loey

 
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Posted 23 February 2013 - 03:36 AM

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.

 

No apologies ever necessary. As for the infertility. I thought I was infertile and my son just turned 21 so try to keep that in mind. Hormone therapy can work wonders. 

 

Continuing to send prayers, healing hugs, positive energy & Love,

Loey

 

P.S. sorry I didn't muli-quote.


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#36 Loey

 
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Posted 23 February 2013 - 03:43 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 :)

 

That's great news about possibly not needing surgery. I have thyroid issues and I've been seeing a naturopath. She's got me on homeopathic thyroid meds (and many others to boost my immune system). Please let us know how you're doing when you feel up to posting. I hope the pain subsides and you improve daily!

 

Love & even more (((healing hugs)))

Loey

 

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. 

 

Sorry about the hospitalization. I hope they are keeping you comfortable. Please keep us posted when your're  up to it. We're all pulling for you!!!!!

 

((((HUGS)))) and more prayers and love,

Loey


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#37 kristenloeh

 
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Posted 02 March 2013 - 05:01 PM

So, Tuesday I started my hormone treatment to hopefully shrink the tumor and balance my Prolactin levels and hopefully gain back my fertility.  Unfortunately, the hormones are making me insanely ill (it makes me feel like I was glutened, times 100) and we won't know if it's working for a couple of months. I have no idea how I'm going to find the strength to get through how the meds are making me feel, I'd almost rather have surgery...


  • 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


#38 GottaSki

 
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Posted 02 March 2013 - 05:12 PM

Hang in there Kristen!

 

We are all pulling for you...so sorry to hear how sick the hormone treatment is making you.

 

Prayers continue that this will provide a great result :)


  • 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 :)


#39 Celiac Mindwarp

 
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Posted 02 March 2013 - 11:48 PM

Hope things improve for you with the treatment. When things are really rough, I try and watch my favorite comedies. My Name is Earl was my friend :)

Thinking of you 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

#40 kristenloeh

 
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Posted 03 March 2013 - 02:23 PM

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P


  • 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


#41 kareng

 
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Posted 03 March 2013 - 02:26 PM

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P


When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?
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#42 kristenloeh

 
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Posted 03 March 2013 - 02:44 PM

When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?

 

 

Haha, for all I know, since I haven't been out to be social in almost a month now, they very well may act like that. Rich people problems. Gotta love it! I'm watching a Real Housewives of Jersey marathon. Man, I love it. Makes me feel like I'm not so whiney when I'm sad about my health when I see them crying because they broke a damn nail. :D


  • 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


#43 kristenloeh

 
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Posted 04 March 2013 - 10:59 PM

So, one of the major side effects I get from this hormone therapy is that food goes just straight through me. When you're sick like that, what do you eat/drink that has helped keep nutrients in you? I'm just so afraid is eat because I know it's going to hurt really bad and it will not stay in for very long..... I drink a lot of vitamin water to make sure I keep the electrolytes in my body, at least.....


  • 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


#44 mushroom

 
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Posted 04 March 2013 - 11:10 PM

Can you try something that has a chance to stick to the sides, like mashed potato? applesauce? rice?  Things that digest easily that do not require a lot of effort by the digestive system.


  • 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

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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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#45 kristenloeh

 
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Posted 04 March 2013 - 11:23 PM

Mashed potatoes have failed, but I will try the applesauce and rice. :) Thanks! It's much better than nothing! We shall see after tomorrow night if either of those will work. I take my next dose tomorrow night.


  • 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





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