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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.