Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

8 Months!
0

17 posts in this topic

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

Share this post


Link to post
Share on other sites


Ads by Google:

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites




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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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))) :(

0

Share this post


Link to post
Share on other sites

Sending some prayers your way Kristen. ((((Hugs))) too. May the Lord have mercy upon you, in Jesus name, Amen. :)

0

Share this post


Link to post
Share on other sites

Thanks guys :)

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

"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. :(

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

when brain surgery is the good news! man. you just never know what life is gonna throw at you.. you have a good positive attitude, sweetie, that will certainly help you through :) keep us posted and i will keep you in my prayers :)

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined