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

I got my labs back yesterday. The tumor is active. I am very low on Cortisol, very high on Prolactin, and my Thyroid is boarderline. I start a hormone treatment soon to start shrinking the tumor and getting my hormones back on track. They are hoping that with this it will reduce if not stop my migraines. Also seeing a neurosurgeon soon to see what he thinks. I should know even more today as to what exactly will be happening with the hormone treatments.

 

Thank you all for your support, I will let you know what else I figure out today.

 

These last few weeks have been hell. Always in pain and it had finally got to me that I was a danger to myself and had to be hospitalized yesterday. 


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



Celiac.com Sponsor (A8-M):



  • Replies 87
  • Created
  • Last Reply
Jestgar Rising Star

So sorry.  Lots of hugs to you, and hang in there. :(

IrishHeart Veteran

Sorry to hear this, Kristen and I send you good thoughts, prayers, and hugs as well. 

 

Hope the neuro can do something more for you. 

GottaSki Mentor

Big Hug.

Along with prayers for your healing, reduction in pain and the docs that help you to have gifted hands and knowledge.

mushroom Proficient

Here's {{{{{hugs}}}}} amd prayers from me, too.  We're with you. 

Celiac Mindwarp Community Regular

Sending hugs too, thinking of you x

kristenloeh Community Regular

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.


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



Celiac.com Sponsor (A8-M):



Loey Rising Star

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.....

 

Hang in there honey. We'll all be pulling for you and keeping you in our thoughts and prayers. Hopefully you have the best Neurologist available.

 

Sending positive energy, healing hugs, and lots of love,

Loey

 

P.S. remember we're all here for you.  

Loey Rising Star

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 :)

 

Sending extra (((healing hugs))) and lots of love  :wub:  :wub:

 

Please keep us posted.

 

Love,

Loey

Loey Rising Star

So today I found out that with the type of tumor I have with the prolactin really high, I am currently infertile. That was a huge hit to me. We are hoping that once the tumor has been reduced in size, and my hormone levels get back to normal, I will become fertile again. *crossing fingers* 

 

The docs have confirmed that the tumor is the cause of my pain, so the only thing that can help the pain until it starts to shrink is oxycodone. 

 

I have started one of the hormone treatments, the hydrocortisone to bring my cortisol and adrenal up to normal levels, but will have to take it for the rest of my life. I start the prolactin hormone therapy to reduce those levels next week. I am getting more Thyroid panels done next week to see how low my Thyroid levels really are and more than likely will be on Thyroid hormone therapy for the rest of my life as well. 

 

My doctors have also referred me to a clinic to receive my "green card" so that I can use medical marijuana for my pain so that I won't have to rely on opiates so much. 

 

We should know after about 6 weeks once I start the hormone treatment for the prolactin levels to know if it's working the way it's supposed to. If that fails, or I can't tolerate the meds, then surgery will be the next option. 

 

Sorry if this post is all over the place and may not make too much sense, my oxy just kicked in and I'm a bit loopy at the moment, haha.

 

No apologies ever necessary. As for the infertility. I thought I was infertile and my son just turned 21 so try to keep that in mind. Hormone therapy can work wonders. 

 

Continuing to send prayers, healing hugs, positive energy & Love,

Loey

 

P.S. sorry I didn't muli-quote.

Loey Rising Star

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 :)

 

That's great news about possibly not needing surgery. I have thyroid issues and I've been seeing a naturopath. She's got me on homeopathic thyroid meds (and many others to boost my immune system). Please let us know how you're doing when you feel up to posting. I hope the pain subsides and you improve daily!

 

Love & even more (((healing hugs)))

Loey

 

I got my labs back yesterday. The tumor is active. I am very low on Cortisol, very high on Prolactin, and my Thyroid is boarderline. I start a hormone treatment soon to start shrinking the tumor and getting my hormones back on track. They are hoping that with this it will reduce if not stop my migraines. Also seeing a neurosurgeon soon to see what he thinks. I should know even more today as to what exactly will be happening with the hormone treatments.

 

Thank you all for your support, I will let you know what else I figure out today.

 

These last few weeks have been hell. Always in pain and it had finally got to me that I was a danger to myself and had to be hospitalized yesterday. 

 

Sorry about the hospitalization. I hope they are keeping you comfortable. Please keep us posted when your're  up to it. We're all pulling for you!!!!!

 

((((HUGS)))) and more prayers and love,

Loey

kristenloeh Community Regular

So, Tuesday I started my hormone treatment to hopefully shrink the tumor and balance my Prolactin levels and hopefully gain back my fertility.  Unfortunately, the hormones are making me insanely ill (it makes me feel like I was glutened, times 100) and we won't know if it's working for a couple of months. I have no idea how I'm going to find the strength to get through how the meds are making me feel, I'd almost rather have surgery...

GottaSki Mentor

Hang in there Kristen!

 

We are all pulling for you...so sorry to hear how sick the hormone treatment is making you.

 

Prayers continue that this will provide a great result :)

Celiac Mindwarp Community Regular

Hope things improve for you with the treatment. When things are really rough, I try and watch my favorite comedies. My Name is Earl was my friend :)

Thinking of you x

kristenloeh Community Regular

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P

kareng Grand Master

I'm all about my guilty pleasure of reality TV; I watch a lot of Bravo :P

When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?

kristenloeh Community Regular

When I feel sick, I have been known to watch Sponge Bob and Dora the Explorer! Silly, happy things. Or housewives of anywhere. Do real people actually act like that?

 

 

Haha, for all I know, since I haven't been out to be social in almost a month now, they very well may act like that. Rich people problems. Gotta love it! I'm watching a Real Housewives of Jersey marathon. Man, I love it. Makes me feel like I'm not so whiney when I'm sad about my health when I see them crying because they broke a damn nail. :D

kristenloeh Community Regular

So, one of the major side effects I get from this hormone therapy is that food goes just straight through me. When you're sick like that, what do you eat/drink that has helped keep nutrients in you? I'm just so afraid is eat because I know it's going to hurt really bad and it will not stay in for very long..... I drink a lot of vitamin water to make sure I keep the electrolytes in my body, at least.....

mushroom Proficient

Can you try something that has a chance to stick to the sides, like mashed potato? applesauce? rice?  Things that digest easily that do not require a lot of effort by the digestive system.

kristenloeh Community Regular

Mashed potatoes have failed, but I will try the applesauce and rice. :) Thanks! It's much better than nothing! We shall see after tomorrow night if either of those will work. I take my next dose tomorrow night.

mushroom Proficient

I will keep my fingers crossed for you :)

GottaSki Mentor

Shroomie is right...keep trying things that are already broken down -- applesauce and smoothies...I put everything in the blender for a very long time -- here is a good giggle to go along with your smoothies...

 

 

And if mashed potato failed...try mashed sweet potato!

JNBunnie1 Community Regular

Peanut butter?

kristenloeh Community Regular

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.

Celiac Ninja Enthusiast

I' so sorry you have to go through this, I wil totaly pray for you. My bio dad had a brain tumor too, had brain surgery, didn't look so good when he came out, kinda made me queezy to see the pictures of his bandaged head BUT he is better and eating healthy and doing iron man stuff! I am going to pray you make it through with flying colors!

Archived

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

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.