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8 Months!


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16 replies to this topic

#1 kristenloeh

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Posted 04 December 2012 - 04:18 AM

I am now gluten free for 8 months as of this December and have NEVER felt better. I went to my doctors to get all of my labs we done to see if I am actually improving inside along with just feeling improved and all of my levels were NORMAL and great! Even my vitamin D, which was only at 17 right before I was diagnosed.

I only have one problem now. I still have my migraines, and they just keep getting worse. I have done all of the elimination diets, and I have figured out all of my triggers. My triggers seem to change as well though. I have gone through a few preventative meds, all of which have failed. We have now started Verapimil as my preventative, and we have upped the dosage a few times and it is finally starting to make a difference. They are pretty sure that I have chronic migraines and the type of chronic migraines I have are different than most. They are called transfer migraines, so that means i have multiple triggers, and my triggers can change and I can develop more triggers throughout my life. Yay! :P I had an MRI today, so we hope maybe that will provide even more answers as to where they may be forming and if there could be any other causes, just in case the CT scans have missed anything.

I am just SO very thankful for finally getting to the bottom of EVERYTHING that is wrong with me. Although the Celiac diagnoses is a bummer for going out and what not since I am only 25, it's just simply amazing that I feel this great. Growing up all of my life, I always thought constantly being sick and feeling miserable and being in pain were just normal and that everyone must feel that way. This is the first time in my whole life I have ever felt like a normal human being and I'm getting better each and every day!

I just thought I would post this to maybe lift people's spirits up. I know it can be hard, but there IS hope out there! It took a while after going gluten-free that I finally started to really feel the changes and feeling better. And oh boy, what a good vitamin compound will do for you. That also makes a big impact on how I feel. I take Celiact plus an additional 2,000 units of D3. It really makes all the difference, I can always tell when I have forgotten my vitamins. Well worth it.

Sorry I'm rambling! I hope this post can help those struggling with being newly diagnosed, and those who have had it for a long time and are just having a bummer of a day.

xo
-Kristen
  • 3

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


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#2 notme!

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Posted 04 December 2012 - 02:06 PM

THAT is wonderful, kristen! and it's awesome of you to be encouraging - it *is* a big deal some days and especially overwhelming for people who are newly diagnosed. and yay for you getting diagnosed at an early age - you might as well be healthy and enjoy your youth! and much better if you are going to have kids.

my daughter (non-celiac) used to get "cluster" headaches similar to migraines - they told her they were caused by stress. she got rid of her ex-husband and they went away hahaha :D i get a (nothing like i used to get) headache sometimes around my pms/punctuation week.

thanx so much for this positive posting and have a great day! :)
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#3 kristenloeh

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Posted 05 December 2012 - 11:55 PM

Thanks doll! I've had migraines since I was 5 years old. Guess I am just one of the lucky ones :P

Although I was diagnosed younger, I've had the disease for well over 10 years, been suffering from all the them symptoms sine I was at least 15, but yes, at least it will only take like 3-5 years to fully heal than 10+ like it could have been.

I figure it's nice for others to hear that even though it is difficult (especially during the holidays), that there really is/can be a light at the end of the tunnel. :)

And even though last night I was glutened and feel like epic hell right now, I know it will pass and I will be right back to feeling good in a few days :D
  • 2

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#4 Celiac Mindwarp

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Posted 06 December 2012 - 06:08 AM

Great to hear 3 months in, thank you :)

Sorry to hear you got got, hope it improves soon.

Wish I could help on the migraines, mine are down to 1 a month since gluten-free. I had to cut out corn sesame coffee too and added B12. They got worse while I was eating lots of(junk type) gluten-free food, and with too much sugar. Stress is killer for me too, and bad posture.

Sending happy thoughts
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 kristenloeh

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Posted 06 December 2012 - 06:23 AM

If I only got the tummy problems I could manage okay, but I get the horrible neuropathy, tons of canker sores for weeks, and body aches, along with it just making me so tired I can't function. Thankfully I have no kids yet and trying to find a job at the moment. The Celiact has all the vitamin and enzymes you need along with probiotics as well. I have found that when I'm glutened while on the Celiact, my reaction is far more manageable (haven't been to the hospital because of glutening for months since taking it).
  • 1

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#6 Celiac Mindwarp

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Posted 06 December 2012 - 06:28 AM

I'm lucky mine is usually only about 5 days. Great the Celiact is helping.

Good luck with job hunting. I am avoiding it until my youngest is a school neyt year. No idea what to do then! My own business or something flexible with a sympathetic boss I guess...
  • 1
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 Fire Fairy

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Posted 07 December 2012 - 06:17 AM

Hi I was undiagnosed for nearly 10 years and have now been gluten-free for two years. I know exactly how you feel, it's as though you have been given your life back. I'm so sorry you still get Migraines mine were killing me but they are gone now unless I get glutenated. Honestly I firmly believed I would die soon before I was diagnosed it was that bad. I'm 38 now and have given myself the goal to try to live to see 112. ;) I gotta live extra long to make up for those 10 years you know.

With my migraines it took two triggers one of them was gluten which sadly before being diagnosed was always present. Another trigger for me is the barometric pressure. Everyone who knew me could just take one look at me and know if it was going to rain. :( You could watch me go downhill as a storm headed my way. Even worked with snowstorms. Now anytime I'm surprised by a storm I'm reminded how much I've improved over the past two years.

To me finding out I was Celiac was like opening a magic treasure chest that fixed everything. Maybe you will find a second magic treasure chest? If I could will it into being for you I would. (((HUGS)))
  • 0
If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#8 kristenloeh

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Posted 14 December 2012 - 09:43 AM

Yup, found that "treasure chest" for my migraines. I have a large brain tumor actually. We don't know much right now. Won't know anything more until after the 26th....
  • 0

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#9 gatita

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Posted 14 December 2012 - 09:52 AM

Yup, found that "treasure chest" for my migraines. I have a large brain tumor actually. We don't know much right now. Won't know anything more until after the 26th....


Oh no!! How awful to hear this.... sending (((hugs))) :(
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Diagnosed with wheat hates me 4/13


#10 GFinDC

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Posted 14 December 2012 - 12:15 PM

Sending some prayers your way Kristen. ((((Hugs))) too. May the Lord have mercy upon you, in Jesus name, Amen. :)
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 kristenloeh

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Posted 18 December 2012 - 05:12 PM

Thanks guys :)
  • 0

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#12 notme!

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Posted 18 December 2012 - 07:47 PM

o kristen i'm so sorry! praying you will have good news. it could happen - a friend of mine actually had one the size of a softball and they operated and removed it and he is still kicking. that was 25 years ago, too, so surely they have gotten better at it. xxoo kiddo
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#13 kristenloeh

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Posted 23 December 2012 - 05:20 AM

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 :)
  • 0

Diagnosed Celiac 04.2012
Gluten-Free 04.2012

 

Diagnosed Pituitary Prolactinoma 12.2012

Low Cortisol/Possible Addison's Disease 02.2013

 

Maybe one day I will feel "normal" again. <3


#14 Takala

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Posted 23 December 2012 - 08:25 AM

"Bittersweet," yes - it always helps to finally get medical validation for the reason you're feeling bad, but not in the "never expected this" department. :(
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#15 gatita

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Posted 23 December 2012 - 08:09 PM

I'm so glad glad part of the news is very good -- the 'it's not cancer, not messing with the optic' nerve part.

Now I will wish you the best on the treatment... I also have a friend who had brain surgery for a nonmalignant tumor (very large one) 20 years ago when she was 50 and she hasn't mssed a beat since, so I hope yours goes even better.
  • 0

Diagnosed with wheat hates me 4/13



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