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      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.

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88 posts in this topic

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. 

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

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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. 

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Big Hug.

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

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

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Sending hugs too, thinking of you x

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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.

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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.  

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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

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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.

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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

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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...

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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 :)

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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

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

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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?

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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

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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.....

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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.

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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.

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I will keep my fingers crossed for you :)

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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!

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Peanut butter?

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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.

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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!

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