• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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

Recommended Posts

kristenloeh    14

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

  • Upvote 3

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


notme!    287

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! :)

Share this post


Link to post
Share on other sites
kristenloeh    14

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

  • Upvote 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

Share this post


Link to post
Share on other sites
kristenloeh    14

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).

  • Upvote 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...

  • Upvote 1

Share this post


Link to post
Share on other sites
Fire Fairy    26

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)))

Share this post


Link to post
Share on other sites


Ads by Google:


kristenloeh    14

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....

Share this post


Link to post
Share on other sites
gatita    32

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))) :(

Share this post


Link to post
Share on other sites
GFinDC    609

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

Share this post


Link to post
Share on other sites


Ads by Google:


notme!    287

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

Share this post


Link to post
Share on other sites
kristenloeh    14

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 :)

Share this post


Link to post
Share on other sites
Takala    413

"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. :(

Share this post


Link to post
Share on other sites
gatita    32

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.

Share this post


Link to post
Share on other sites


Ads by Google:


notme!    287

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 :)

Share this post


Link to post
Share on other sites
kristenloeh    14

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 :)

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
      107,901
    • Total Posts
      938,571
  • Member Statistics

    • Total Members
      65,811
    • Most Online
      3,093

    Newest Member
    mytinyhouse
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hate to tell you but McDonalds French fries are NOT gluten free.  The "natural beef flavoring" contains wheat.  Their hasbrowns are also fried in the same fryers thus making them NOT gluten free.  Lots of Miss information by this poster.  
    • .....you do know the Mc Ds uses wheat in the fries? FRENCH FRIES Ingredients: Potatoes, Vegetable Oil (Canola Oil, Corn Oil, Soybean Oil, Hydrogenated Soybean Oil, Natural Beef Flavor [Wheat and Milk Derivatives]*), Dextrose, Sodium Acid Pyrophosphate (Maintain Color), Salt. *Natural beef flavor contains hydrolyzed wheat and hydrolyzed milk as starting ingredients. Contains: WHEAT, MILK. https://www.mcdonalds.com/us/en-us/product/small-french-fries.html

        Being a Hydrolyzed version it might not contain the gluten proteins.....but you said any wheat proteins.
      Side thoughts I would not trust that place, stuff is constantly cross handled and changing gloves between stations does not happen often.
      AVOID fast food restaurants, keep protein pars, prepackaged snacks, etc available in your car and pack meal prep kits.
    • Grew up in a Hispanic half family, and ironically have a bad allergy to corn now....anyway when they get a bit dried out you take 2 large sheet stretch of a paper towel soak, wring it bit then wrap 2-6 tortillas in it put on a plate an zap in the microwave for a bit, this steam cooks them, and if they are dried out a bit from the fridge and falling apart this can make them more pliable. If really dried out wet the tortillas directly.......we never wasted food. PS do not ask for times...I have not eaten them in 5+ years and I break out in a rash from touching corn.
    • Place in a ungreesed non stick pan on med heat and turn after 20 seconds. This is how I cook corn tortillas orig and then reheat as well.
    • It's way too late to help this original poster, but in reading this thread, there's so many things that worry me.... WENDY'S IS THE WORST PLACE TO TRY TO EAT GLUTEN-FREE!!!! They are NOT at all dedicated in ANY way and they are a nightmare to even ask for gluten-free.  I travel A LOT and I can't afford to spend a fortune or tons of time finding gluten-free restaurants that won't make me sick. I eat the Grilled Chicken Sandwich NO SEASONINGS (custom made to order very juicy and delicious - takes 7 minutes to cook and worth the wait) at McDonalds at least twice a week.  I am extremely gluten allergic - extremely sensitive to wheat protein and poisons in our food supply - and allergic to a bunch of other things too (including milk protein - whey, sodium casseinate, and lutein - flax seed, opiates = poppy seeds, and any kinds of grass such as wheat grass, etc).  I order "grilled chicken filet 'a la carte' with no seasonings" and medium french fries. In the mornings, when I can't cook at home, I order 2 round eggs and 1 hash brown.  I NEVER GET SICK AT MCDONALD'S when I order these orders. I search on Celiac.com any time I try to eat out and I rarely end up ordering places because too many people post about getting sick off this or that because so many of us don't know what is making them sick!!!!! People order then think it's got gluten in it when it could be cross- contamination or yeast or milk protein that is making people sick because they aren't aware that with a gluten-allergy undiagnosed for a long time comes a whole long list of these other things we need to watch out for!!!! Sign up for the gluten-free restaurant notification app and use Celiac.com, but ALSO DO YOUR RESEARCH AND GET THE ALLERGY TEST PANEL! If you can afford to pay $500 out of your pocket, get the DNA allergy test.
  • Upcoming Events