Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pituitary Adenoma
0

49 posts in this topic

Hi everyone. I just got the results back from my MRI of my pituitary adenoma. Back in June I was suffering from a major headache.....to make a long story short....I had a 3mm tumor on my pituitary gland. Strangely enough my Dr said my headaches were not from this tumor, and the tumor would most likely be gone in a year.

My MRI showed my tumor is now up to 7mm....and my PCP is sending me to a neurosurgeon. WTF!!!!!!!!!!!!!!

Anyone have and similar stories for me? Good or bad.......whatever you got!

Thanks......this sucks

0

Share this post


Link to post
Share on other sites


Ads by Google:

I did have a pituitary adenoma....about 2.5 mm, but it did go away about 9mos. later. I think it's a fairly common thing. So sorry that it's gotten larger! You may feel much better by having them go in and take it out. From what I remember reading the procedure is not as complicated or scary as neurosurgeon might sound.

Praying that all goes well!

0

Share this post


Link to post
Share on other sites

The Pituitary Network Association is an excellent source of info

www.pituitary.org

0

Share this post


Link to post
Share on other sites

So, how are things going with the tumor? Is it active? Have you started any hormone treatments and/or surgery? Just wondering because I was diagnosed with a 7mm pituitary tumor, and it is actively producing prolactin. I just started my hormone therapy to start hopefully shrinking the tumor and balancing out my prolactin levels. Hope all is well and that the docs did/are doing something to help get rid of the thing. They flippin suck. <3

0

Share this post


Link to post
Share on other sites

I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 

0

Share this post


Link to post
Share on other sites




I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 

 

Oh wow, I'm surprised they haven't done surgery to take yours out. It's only 1mm from being a macro AND going towards your optic chiasma. So, is it not active/producing extra hormones and that's why they haven't done anything about it?

0

Share this post


Link to post
Share on other sites

It's a very slow growing tumour.  The only problems I had was some years ago when after weaning my son off the breast at six months, I continued to produce milk for six additional years.  The doctors then did testing but everything else came back normal and I stopped producing the milk.  We didn't know then it was because of the tumour.

 

At this point they don't want to take out the tumour as it behaves a bit differently than  a pituitary adenoma in that it invades the tissue it's attached to instead of just sitting on top of it.  I'd lose my pitiutary function totally or the loss of eyesight.  At this point they say the symptoms are worse than the treatment.  Good enough for me! 

 

How are you finding the hormone replacement? 

0

Share this post


Link to post
Share on other sites

The Cabergoline is making me insanely ill. We are hoping my body will adjust to is after a month or so. I go in to get my blood work done to see if it's making any difference or not, and then an MRI in 3 months to see if it's doing it's job with shrinking the tumor. I also need to go and get my thyroid panels done because they are pretty sure I have hypothyroidism. I also have very low cortisol, so I'm on Hydracortisone for the rest of my left as well. *fingers crossed it all works and I can find some relief from these horrid migraines* 

0

Share this post


Link to post
Share on other sites

That is absolutely horrible that you have to go through all that on top of figuring out and adapting to the gluten free diet and lifestyle.  The migraines are insidious, aren't they?  One could just about go through anything in life if it wasn't accompanied by a huge whacking throbbing in the head. 

 

Once the tumour shrinks or it's removed, will your pituitary function normally?

0

Share this post


Link to post
Share on other sites

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

1

Share this post


Link to post
Share on other sites

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can get through anything....the bad, tough and rotten -- along with the good and inspiring!  I am in awe of you...keep the faith.

0

Share this post


Link to post
Share on other sites

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can.  You really can.  I know when I was diagnosed with my tumour and facing the consequences of an eventual surgery and what that would mean I really took a good long look at life and what it meant.  You come to accept a lot of things and try not to sweat too much over the small stuff.  You find the reserves to keep going and dig really hard to stay resolute and calm and try and keep finding something to be positive about.  "What ifs" get discarded as too heavy and you try and live very much for the present. 

 

Keep going, kristenleoh.  You have much bravery, chatzpa and strength.  Big hug to you.

 

Kamma

0

Share this post


Link to post
Share on other sites

You are both too kind, and Kamma, you seem even more strong and badass than I am :)

0

Share this post


Link to post
Share on other sites

Keep me posted on how you progress with the hormones and the state of the tumour.  You can pm me if you want. 

0

Share this post


Link to post
Share on other sites

I talked to my Endo today and they are putting me on a different medication for the tumor since the Cabergoline is making me really sick. I start it today and if it makes me sick as well, then the next step will probably be surgery.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Oh, that's too bad.  I know you must have been hoping that this drug would do the trick without the side effects.  The heart racing like mad must have been frightening.  Could it be an initial effect that will fade with time?

 

What did your endo say when you dropped in on her?

0

Share this post


Link to post
Share on other sites

Endo has officially taken me off of the meds. That side effect with my heart was a major one and could have killed me. So, in about 2 weeks, I will have a surgery consult. So I will be definitely be having surgery sometime in the near future. :-/ 

0

Share this post


Link to post
Share on other sites

Oh Sweetie...I am sorry the new protocol failed.

 

Good thoughts starting right now.....your surgery consult with go well.  I know it.

 

Hugs!!!

0

Share this post


Link to post
Share on other sites

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure.  :(

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma

0

Share this post


Link to post
Share on other sites

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure.  :(

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma

 

We won't know how they will be going in until the consult in a couple of weeks. My tumor is behind my pituitary, so it's closer to my brain than normal ones, so it could be a possibility of them going through the top of my skull instead of going through my nose. I was getting used to the fact/hope that the meds were going to be what was going to work, so now being faced once again with the reality of surgery and it now being for certain that I'm going to have to have surgery has got me pretty scared. I've never had to have a serious surgery like this to where you have to be hospitalized. I've never have had to be actually hospitalized, so I guess I need to start planning for food for my stay since I've heard horror stories about the lack of gluten free options while at the hospital. >.<

0

Share this post


Link to post
Share on other sites

Yeah, it's a scary thought to think of someone going ito your brain.  I understand totally.  The comforting thought is that neurosurgeons are those at the very top of the medical field.  They don't pass 'em on in medical school if they can't do the job and do it impeccably.  If you get a choice in a neurosurgeon, ask to see how many of these particular types of surgerys they have performed. 

 

kristenloeh, you're going to get through this and the outcome will be positive.  When you start feeling the fear rise, try and hold onto this thought.  You never know, the worst part of the whole hospital experience might be the food they serve you. ;).

 

Don't worry about the 'what if's'.  Focus and act on what you have control over.  I think it's a great idea to figure out the food that you are going to need.  Make sure you buy some nice treats for yourself for after you wake up from the surgery.  Lord, I'd pay an arm and a leg for a whole bunch of gluten free licorice on this occasion even if I had to send to Switzerland for it.

 

This whole experience is frightening.  Feel the fear but also keep grounded.  You're strong, smart and capable of handling what comes after.  If you need comfort to help ease the jitters, shout it out here.  We'll support you.

 

Big hug,

Kamma

0

Share this post


Link to post
Share on other sites

I'm trying to stay strong about it all, but then once I'm blind sided with pain, at least a few times a day, it starts to get to me, A LOT. It seems like I cannot go a single day without crying and it's really getting to me. I sound like a whiny b*tch and I hate it, lol.

0

Share this post


Link to post
Share on other sites

No, sweetheart, you sound like a woman that is dealing with a helluva lot and trying to get through it.  Whiny bitches moan about small things like breaking a nail, having streaks from their foam on suntan and not plucking their eye brows in time.  You are most assuredly not a whiny bitch.  Let that thought be banished from your head - you already have a lot going on in there.

 

Crying is a good thing to do.  It releases a lot.  I spent a year crying in the most inopportune situations and times.  One time I was at a farmer's market, getting my free run eggs.  I was late in coming and they had no more eggs.  I just started bawling and I mean bawling.  An old man stopped and thought something horrible had happened to me and I looked at him with tears running down my face and said, No, I can't have any eggs and just started bawling again.  He gave me a strange look and hurriedly went on his way.  Jeesh.  Things like that happened all the time.  People thought I was a crackpot.  I was never a 'crier' before but I sure made up for it in that year. 

 

:rolleyes:

 

What is the cause of the pain you are experiencing, kristenloeh?

1

Share this post


Link to post
Share on other sites

I cry SO randomly because the tumor is producing so much more prolactin that my body thinks I'm preggers, so I have ALL the side effects of being preggers without getting to have the baby! Also, since it's a prolactin producing tumor, it's causing daily, constant migraines and the only thing that helps is oxycodone and for a short time my medical marijuana. Unfortunately, I have no painkillers right now and can't get a new script for a while, so I'm kind of out of luck on the pain relief front.

 

Once I started bawling because my hair straightener wasn't working right. I yanked out of the wall, threw it across the house and flipped out. I'm usually not a crier either unless I'm insanely pissed or depressed. SO damn annoying!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,352
    • Total Posts
      917,435
  • Topics

  • Posts

    • Daughter with celiac- need test result help
      Tell me if I'm going overboard- but I feel like she could be getting glutened from trace sources on surfaces. I'm a crazy person over it, like extreme germaphobe only it is gluten not germs. She's supposed to wash her hands and wipe the table before she eats. Being nine she's not always going to do that if I'm not there reminding her. Just an an example, we were at a birthday party recently. The kids ate pizza (my daughter ate her prepackaged gluten free pizza I brought). With their hands greasy from pizza they played a bounce a balloon game, where they all had to keep one balloon from hitting the floor, then sat down to cake. I sat in shock then made my daughter go wash her hands again before eating cake. Major crazy mom, but not really right? 
    • Testing After Celiac Disease if IgA deficient
      Is Tissue Transglutaminase IgG one of the tests that can be done (I am guessing that is what TTG IGG stands for). Please correct me if I am wrong.
      Thank you.
    • Weird Reaction
      I'm afraid to say I don't really think it is normal Richie, but I do recognise the shakiness and nausea you speak of, as I've been there. (Pre-diagnosis), my shakiness was so bad, my muscles were very weak and couldn't walk without the aid of a walking stick, my ferritin levels were so very, very low and had to take iron tablet every day for months. My hair was falling out, I had really bad digestional issues, amongst other things. I think you should lay off the coffee and the barley drink and all gluten/wheat, because until you do, your body is not going to repair itself properly. Damage is done to the gut even if you don't have gastrointestinal issues, as not all coeliacs have symptoms, but the damage is still being done to the gut, which in turn can cause osteoporosis, other auto-immune diseases and also cancer.  If you ever get a test for coeliac disease, you need to be eating gluten/wheat for at least 6 weeks on a daily basis in order for it to set of the immune response in your body, which will cause a positive result. (Blood tests are less reliable than endoscopy with biopsies - bare this in mind).  You may decide of course not to have a test for coeliacs because of how ill it could make you feel by eating gluten etc. In which case, you need to avoid all gluten and wheat forever! (By the way another symptom of coeliac disease is dairy/lactose intolerance- which could be causing your nausea). Sorry to be blunt, but you need to know the dangers and there's no point in sugar coating it. What is your fasting blood test for? 
    • Take #60forCeliac this May for Celiac Awareness Month
      Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need a cure. Experts agree that if we work together, we can make it happen in under 10 years. View the full article
    • Simple Kneads Gluten Free Bread
      The first thing you'll notice when you visit the Online Bakery at SimpleKneads.com is that this gluten free bread doesn't look like other bread.  It looks beautiful. And it certainly doesn't taste like other gluten free bread, either.  It tastes like real bread. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,486
    • Most Online
      1,763

    Newest Member
    Trace66
    Joined