Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pituitary Adenoma

kimis

By kimis
in Related Issues & Disorders

Recommended Posts

kristenloeh Community Regular
kristenloeh
Posted

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*

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kamma Explorer
Kamma
Posted

Fingers crossed too that you won't have to have radiation.  Radiation is one of my fears as well.  The only good thing I can say about that is that the effects of radiation do go away after time.  :mellow:

 

You're on an emotional rollercoaster ride with the hormonal state that you're body is in and the anticipatory/anxiety feelings that all this is bringing on.  Throwing hair straighteners is totally acceptable and understandable.  When we're in the clutches of the hormones and we don't feel any control over our emotional selves life just feels rotten.  One of the things that I do to kind of help maintain a steady, calm presence is to remind myself that the crazy, tearfilled emotions that I'm feeling are 'not me' - just my body  wildly fluctuating.  It helped to be able to stand back and just observe instead of getting caught up and lost in it.  It's called 'mindfullness training' in Western medical circles and is derived from Buddhist meditation practices.  They also use it to help people with pain and depression so it could also be useful for the migraines until you get your prescription filled.  Just google it if you want to know more.

kristenloeh Community Regular
kristenloeh
Posted

Hmm, interesting, I'll take a look at it.

 

Good news: My thyroid levels came back normal, so no Hypothyroidism for me :)

 

Bad news: This migraine I had for 3 days finally made me break down and go to the hospital last night.

kareng Grand Master
kareng
Posted

Hmm, interesting, I'll take a look at it. Good news: My thyroid levels came back normal, so no Hypothyroidism for me :) Bad news: This migraine I had for 3 days finally made me break down and go to the hospital last night.

Did it help? I feel so bad for you. I wish I lived closer so I could drive you or walk your dog or do your laundry or make you chicken soup.

kristenloeh Community Regular
kristenloeh
Posted

Did it help? I feel so bad for you. I wish I lived closer so I could drive you or walk your dog or do your laundry or make you chicken soup.

 

Yeah, they gave me some percocet along with a cocktail of toradol, compazine and benadryl. Got the pain down to about a 4 or so, and then they gave me a script for Floricet until I can get in with my primary care doc. My jaw has been hurting like hell so I haven't been able to eat much as of the last 5 days. All symptoms point to TMJ and I'm REALLY hoping that is NOT the case. 

 

Aww, you're so very sweet. Thankfully, my mom and step-dad have been great with taking care of me through all of this. 

Kamma Explorer
Kamma
Posted

Pain under control now, kristenleoh?  Life is always a lot more tolerable when you don't have a jack hammer in your head. 

 

Fantastic you don't have hypothryroidism.  Cross that one off your list!  :)

kristenloeh Community Regular
kristenloeh
Posted

Pain under control now, kristenleoh?  Life is always a lot more tolerable when you don't have a jack hammer in your head. 

 

Fantastic you don't have hypothryroidism.  Cross that one off your list!  :)

 

Yeah, I'm just back to my normal daily pain off and on instead of constant. Close to constant, but not totally, lol. And yeah, it's nice to know there is SOMETHING normal about me, haha. :P

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
kristenloeh Community Regular
kristenloeh
Posted

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

Kamma Explorer
Kamma
Posted

Yup, I'd be freaking out too.

 

Which procedure are they going to use?

kristenloeh Community Regular
kristenloeh
Posted

Going through my nose, through my sinus.

GottaSki Mentor
GottaSki
Posted

Praying for your surgeon's hands to bring healing -- and had to post so you could see I finally took a photo of my blue toes!

 

PS...Shelby is sporting a pink ribbon in honor of Kristen along with the green striped (my favorite color) -- but the pink got cropped in the profile pic thingy

kristenloeh Community Regular
kristenloeh
Posted

Praying for your surgeon's hands to bring healing -- and had to post so you could see I finally took a photo of my blue toes!

 

PS...Shelby is sporting a pink ribbon in honor of Kristen along with the green striped (my favorite color) -- but the pink got cropped in the profile pic thingy

 

Aww!! Super cute! I still have my toes blue and will be doing my nails blue on Sunday as well, for extra healing :)

GottaSki Mentor
GottaSki
Posted

Good Luck Kristen!!!

 

Fresh blue fingers and toes here -- plus a cobalt blue sparkly ribbon on both my kitty and dog :)

kristenloeh Community Regular
kristenloeh
Posted

Good Luck Kristen!!!

 

Fresh blue fingers and toes here -- plus a cobalt blue sparkly ribbon on both my kitty and dog :)

 

Aw! Thanks! Check in is at 11:30am tomorrow. Getting ready to say "eff you tumor! you're getting your butt yanked out!!" :P

kareng Grand Master
kareng
Posted

Bye Bye tumor!

kristenloeh Community Regular
kristenloeh
Posted

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

GottaSki Mentor
GottaSki
Posted

Ok...sucky for now, but so thankful to hear your blob is gone! And the numbers are great, right?

Rest up - the racoon look will fade - thanks for the update :)

Kamma Explorer
Kamma
Posted

That's fantastic that he was able to preserve 80% of the pituitary.  Seriously, you must be ecstatic about that.  

 

Glad you came out of this relatively okay.  The black eyes will fade and the nose will grow back (somehow that sounds like Pinochio) and you'll move onwards to a more fulfilling life sans the pain and wacked out hormonal stuff.

kristenloeh Community Regular
kristenloeh
Posted

Well, looks like I am already having my first complication with the Open Original Shared Link. Was diagnosed with Diabetes Insipidus, so I have to start a new hormone treatment ASAP and keep a VERY close eye on my sodium/electrolyte levels. Awesome.

GottaSki Mentor
GottaSki
Posted

Sorry Girlie--

 

Is this from surgery or your body adjusting to your pituitary getting back to functioning without "Blob"?

 

Hang in there -- you had major - um -- MAJOR surgery on Tuesday -- it will take some time to heal -- rest up!

kristenloeh Community Regular
kristenloeh
Posted

Sorry Girlie--

 

Is this from surgery or your body adjusting to your pituitary getting back to functioning without "Blob"?

 

Hang in there -- you had major - um -- MAJOR surgery on Tuesday -- it will take some time to heal -- rest up!

 

 

It's a complication from the surgery. No idea if it will be temp or perm yet. Starting new meds for it today and having to get my labs done tomorrow, Gotta keep a major close eye on my levels so I don't go into seizures and what not.

GottaSki Mentor
GottaSki
Posted

ya...that convulsing crap is no fun -- careful, easy going....are you still a raccoon today?

kristenloeh Community Regular
kristenloeh
Posted

ya...that convulsing crap is no fun -- careful, easy going....are you still a raccoon today?

 

Not nearly as bad as the other day, thankfully. I just started to meds for the diabetes and I'm responding really well to it thankfully. :)

kareng Grand Master
kareng
Posted

Sorry this is so hard. Sending positive thoughts.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. CatS
      - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

      Thank you! It’s very easy to make seedy crackers. They are much more nutritious than commercial gluten free bread,
    2. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve. thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poo...
    3. Wheatwacked
      - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      My son was diagnosed when he was weaned in 1976 after several endoscopies. Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree. Whether an endoscopy is positive or negative is irrelevant. That may happen even with endoscopy. Pick your doctors with that in mind. In the end...
    4. RMJ
      - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1. Genetic testing. Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With...
    5. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      here are the lab ranges. Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,802
    • Most Online (within 30 mins)
      7,748
    BoroMike
    Newest Member
    BoroMike
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      Just diagnosed today

      By JoJo0611 · Posted

      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.