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

Results....

kristenloeh

Recommended Posts

kristenloeh Community Regular
kristenloeh
Posted

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.....

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

Celiac.com Sponsor (A8-M):


  • Replies 87
  • Created
  • Last Reply
mushroom Proficient
mushroom
Posted

Oh honeybun, what a trauma for you. Of course you're flipping scared, but it is probably benign. I know you can't help worrying, but oftentimes they are. Will definitely keep my fingers crossed for you. Sending oodles of positive thoughts, and some warm {{{{{HUGS}}}} and {{{{cuddlesl}}}} your way.

Hang in there and do continue to let us know what is happening with you.

IrishHeart Veteran
IrishHeart
Posted

Sweetie.

Like Shroomie, I am sending all good vibes, encouraging thoughts, prayers and positive energy to you.

I am sure you are scared, hon and I do not blame you one bit, but try to think positive thoughts about your

prognosis and recovery.

I send ((big warm hugs)) to you.

Keep us posted.

My best to you, IH

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Hi

I will certainly be sending positive thoughts and hugs your way.

Of course it is scary, but I'll have fingers crossed for you and the neuro to make the BEST plan to get you healthy again.

Let us know how you are getting on

Many many good wishes

Mw x

kareng Grand Master
kareng
Posted

On No! Sending some postive thoughts your way. Keep us posted if you feel up to it?

GFinDC Veteran
GFinDC
Posted

Prayers and hugs sent. But a few more hugs are not bad right? (((((((hugs))))))). My sister had a I think they called it gamma knife or some such thing. And a co-worker at my old job had some kind of brain surgery. People do recover from such things.

Jestgar Rising Star
Jestgar
Posted

Very scary honey. :( Hugs and strong thoughts heading your way.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Oh Sweetie :(

HUGE Hugs heading there right now!

Prayers today and in the coming days for strength and healing.

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Thank you all, it's always nice to know there are people out there who care. Once I know more after the 26th I will let you all know <3

shadowicewolf Proficient
shadowicewolf
Posted

That has to be hard.

On one hand, you know whats been causing it, yet on the other hand.... :(

Hope ya get better :)

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Thanks all, I've been trying to rest a lot because it's been making me rather sick lately.

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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 :)

IrishHeart Veteran
IrishHeart
Posted

This is good news! "Not cancer" is always good news.

I am sorry you have to be operated on( as the other option is less invasive), but if it gives you any encouragement at all, my (then) 82 year old Mom had brain surgery for a dangerous subdural hematoma. She had a few weeks of a b%$@#in shaved head hairdo that we threatened to dye

purple ( we were this close to getting her to go for it, too!)

and she did have to do some required post-op therapy to make sure her coordination was not affected (it wasn't)

but she recovered rather quickly.

You're young and strong and I bet your doctors think your prognosis is excellent, yes?

I am sure this makes you still nervous, of course (all surgeries are scary. I've had 8 in my lifetime, so I understand this apprehension) but you're probably feeling relieved and optimistic, too.

I send you all good wishes and prayers for a quick and total recovery.

Please keep us posted! Merry Christmas, hon.

GottaSki Mentor
GottaSki
Posted

Ditto - I'd say that is excellent news - not dismissing a very serious surgery - just very good to hear it is not cancer.

Merry Chrristmas to you - thank you for updating us :)

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Really pleased to hear your good news, not having cancer must be a relief.

The surgery you described and location of the tumor sounds manageable. All the very best for Christmas and for the start of your healing.

Mw x

bartfull Rising Star
bartfull
Posted

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))))

mushroom Proficient
mushroom
Posted

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!.

JNBunnie1 Community Regular
JNBunnie1
Posted

Woohoo!!!!

GottaSki Mentor
GottaSki
Posted

Hi Kristin!

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

You remain in my thoughts and prayers for healing.

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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 :)

mushroom Proficient
mushroom
Posted

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

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

IrishHeart Veteran
IrishHeart
Posted

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.

GottaSki Mentor
GottaSki
Posted

And another big HUG :)

Thanks for the update.

  • 4 weeks later...
Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Just spotted you back - how's it all going now?

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. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    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

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.