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
  • Author

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.

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

Celiac.com Sponsor (A8-M):


  • Replies 87
  • Created
  • Last Reply
kristenloeh Community Regular
kristenloeh
Posted
  • Author

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.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

Loey Rising Star
Loey
Posted

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

Loey Rising Star
Loey
Posted

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!

Loey Rising Star
Loey
Posted

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

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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. >.<

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

Celiac.com Sponsor (A8-M):


kristenloeh Community Regular
kristenloeh
Posted
  • Author

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* 

Loey Rising Star
Loey
Posted

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

GottaSki Mentor
GottaSki
Posted

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 :)

IrishHeart Veteran
IrishHeart
Posted

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

  • 3 weeks later...
kristenloeh Community Regular
kristenloeh
Posted
  • Author

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

kareng Grand Master
kareng
Posted

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.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

IrishHeart Veteran
IrishHeart
Posted

All positive thoughts sent your way!! 

Loey Rising Star
Loey
Posted

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

 

Loey

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Good luck for Tuesday xx

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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 :)

Loey Rising Star
Loey
Posted

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

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Just saw your status update.

Early days, look after yourself.

Massive best wishes for fast healing and fantastic outcomes

Mw x

kareng Grand Master
kareng
Posted

Saw you status to about looking like you were beat up.  Feel better soon!

kristenloeh Community Regular
kristenloeh
Posted
  • Author

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

mushroom Proficient
mushroom
Posted

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!!!

Jestgar Rising Star
Jestgar
Posted

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

Loey Rising Star
Loey
Posted

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!!!!

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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.