• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

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:
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
Ads by Google:


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
      106,749
    • Total Posts
      932,170
  • Member Statistics

    • Total Members
      64,206
    • Most Online
      3,093

    Newest Member
    Nati
    Joined
  • Popular Now

  • Topics

  • Posts

    • I was diagnosed with celiac 2 years ago and since have been gluten-free. When I started my ttg was 88. I just recently visited the doc because I still seem to suffer from almost daily stomach pain. My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy.  The metamucil I took one day and I had such bad stomach pain and loose bowel movements I felt too miserable to try it again. I haven't tried the lactaid yet but in the past I have and didn't see much difference.  Heres the other thing: I do eat out a lot. I try to stick with safe places but every now and then I play the odds. So I usually manage to get sick once a month (lately it's been more) so I went to the doc and had my ttg level tested to see if my body is still getting gluten and this is why I still feel horrible. But my levels came back at 4, so now I'm just wondering... what the heck? I'm feeling super discouraged and doomed to a life of unexplained stomach pain.    The annoying part is all my dr did is give me the results. Like "oh you're continuing to improve." Ok, but I'm in paid so what's going on? No answers, ever. It seems like I get suggestions, but they never do anything and I'm so fed up with my body. I'm tired of waking up frequently wondering what I could have ate that is bothering me. I had no idea two years later I'd still be struggling. Lately the stomach pain has increased and it's daily now again. I've been taking pepto for it and it helps a bit, but I don't want to live life digging in my purse for pepto everyday.   any advice or suggestions from anyone who has been through this are appreciated.  I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.      
    • I agree that this article is a scare tactic.  Looks like this child was starved to death. Note the article states the parents did not seek medical help. Millions of children and adults have food allergies and intolerance but do not have this happen. Following a medical diet is a healthy choice for quality and quantity of life. These types of articles have no value in this place of healing.
    • I also have a serious water problem. I have not been tested in any way but I my allergist said that there are no safe chemical testing for allergies. I get anaphylaxis from chemicals and have an epipen. Chlorine is a problem for me. When I drink tap water I feel like I have the flu and I got shingles when I tried Pur filtered tap water. We do not have floride in our water. But probably sulphur and more. I was drinking distilled (called dead water for lack of minerals) but I saw a video in my area where someone tested the pH of tap and bottled waters. I got some PH  strips and did so too. I was curious because I have a problem with citric acid causing bladder infections. Well my distilled was highly acidic. I can not drink bottled waters that add vitamins or magnesium. I get severe cramping from magnesium, like 12 to 24 hours of it, even supplements and leafy green veggies. I found Crystal Geiser is a clean spring water that tested base. I carry a list of others in my purse. I feel better already. Good luck, I can relate.
    • Thank you all!!! I really appreciate your advice. I called the lab and they said I could not drink the tap water because of chlorine. I am looking into getting a distiller. It is also very likely that the vitamin B12 and D are low. I am doing my best to take the vitamins but sometimes I skip them. I need to be better about it.  I have actually planned on trying the AIP diet. Thank you for explaining about histamine levels. This further motivates me to try. Thank you!
    • Not the sort of thing I came here to read today....
  • Upcoming Events