• 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.

2 Years gluten-free!
0

12 posts in this topic

2 years gluten-free and everyday I am so thankful that we figured out what was literally killing me.

It has not been easy but there are more good days than bad.

No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.

Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.

When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.

xo

ada

1

Share this post


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


2 years gluten-free and everyday I am so thankful that we figured out what was literally killing me.

It has not been easy but there are more good days than bad.

No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.

Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.

When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.

xo

ada

Congratulations!!! So glad to hear you feel so much better. I am 29 months and I understand! I too am off of two of my three antidepressants (still workings on the last one, slowly cutting back), more good than bad days, no more mouth sores, rapid heart beats...... Life is good!! :D

0

Share this post


Link to post
Share on other sites

The anti depressants took a long time to wean off of...And when I start to freak out, I wonder if I made a mistake, but no regrets. Congrats on 29 months. Amazing how long this healing can take!

0

Share this post


Link to post
Share on other sites

Happy Anniversary to you!

Always great to hear stories of improvement - thank you for sharing :)

0

Share this post


Link to post
Share on other sites

Thank you so much for sharing! I'm 3 months and struggling. I am having days here and there where I feel better but more days that I don't. I am not one to cry but yesterday I sobbed in discouragement - questioning if this is the right thing. I read your success stories and how long it took and I cried again this morning. This time in hope.

I love Celiac.com. I don't think I could do this without you all!

0

Share this post


Link to post
Share on other sites
Ads by Google:


Hi ADA!

So happy to "see you"! :)

I remember us both commiserating about the horrible burning nerve pain we had and how we were up all night walking 'round and 'round our houses so we did not wake our husbands (again). We were in dire straights back then, weren't we girl? ugh.

We were not "fast healers" like some and it was very discouraging and required more patience than seems possible.

That all seems like a bad dream now, doesn't it?

I am so very happy for you!!!! and like you, I still have remnants of the nerve pain, plenty of bone/joint pain and muscle weakness yet to resolve, but I never, ever lose hope!

Each month that passes, we get better.

I am a few months behind you in recovery and hearing how much you have progressed always gives me encouragement, so thanks a bunch for letting us know.

Happy "re-birth" day.

As always, I wish you all the best!!

xxooIH

0

Share this post


Link to post
Share on other sites

Thank you so much for sharing! I'm 3 months and struggling. I am having days here and there where I feel better but more days that I don't. I am not one to cry but yesterday I sobbed in discouragement - questioning if this is the right thing. I read your success stories and how long it took and I cried again this morning. This time in hope.

I love Celiac.com. I don't think I could do this without you all!

Ranne (hug)

The hardest part is being patient as the body heals.

Try to look at it this way--you are healing--- and each month that passes, is progress. The people who are 5, 6, 7 years or more past DX tells us we will feel better and better as time passes. My doc tells me "look at each year as a healing year". I was dying 20 months ago. I could not stand, walk, sit or lie down without horrid burning pain. I could not lift my arms or walk the length of my driveway. I had dozens of horrid symptoms and was weak, having lost 90 lbs. and major muscle mass. I thought death would be easier, but I refused to give up.

This summer, for the first summer since 2007, I could swim again. (not the distance swimming I used to do, just yet, but I'll take it!) and I can drive again (I had lost that ability, too) and I can sleep through the night. I had raging insomnia for 3 years.

And last month, I went kayaking.

I am not totally "there yet" ----but I am not at all the sick woman I was either.

whoohoo!!!

Healing happens.

Hang in there, hon!

1

Share this post


Link to post
Share on other sites

Ada...thanks for sharing! It is inspiring to hear the healing that you are feeling after 2 years...I also appreciate this site so much! I am 10 months post-diagnosis & I need hear from people that are further along than me.

Ranne10...hang in there. You are only 3 months in...that's still really new. Healing the gut in an adult can take years. At 3 months post-diagnosis my husband still had to do all the grocery shopping in our house...I had lost 22 lbs, lots of muscle mass & was too weak to do almost anything. I remember spending MANY nights up wandering the house in pain...or curled up in a ball on the floor. I still have issues, but I CAN function! I still wear out, but I can take care of the daily things...at 3 months post-diagnosis I was discouraged this day would not come.

Anyways...one day at a time for all of us!

0

Share this post


Link to post
Share on other sites

Thanks you so much for this post!!!! I have been feeling discouraged too and wondering what's wrong with me after hearing about so many people who feel better just a few days or weeks after going gluten-free. I haven't been one of them, still have major gut issues and joint pain... so you give me hope.

Congratulations on your anniversary and on getting better!

0

Share this post


Link to post
Share on other sites

Congratulations! I am just starting this journey and I was just expecting to start feeling better right away but I have quickly learned that it's a process. The damage didn't happen overnight and it's certainly not going to heal overnight. Thank you for the encouragement and I hope that someday, I too, will be able to say that I feel human again!

0

Share this post


Link to post
Share on other sites

Hi IH!!!

xoxoxo back girl!!!

Yeah, it has been a crappy long journey, eh? (I can say that, I'm canadian).

I expect we will be feeling the effects for a LONG time, but it just reminds me how far I have come.

Every day that I am not in screaming pain, I celebrate. Every day that I don't have suicidal depression, I celebrate.

That's all I can do. I find myself singing in the car (at the top of my lungs and I am BAD) and remember a time when I thought I would never sing in the car again. Stupid little things like that that make we weep with gratefulness, I will literally CRY when I can do something that two years ago I thought was gone forever. Very few people understand this. You start feeling poorly, you start fading away and pulling back. Your friends and family watch helplessly, fearing you are going to die...You start to get better, they are SO happy but don't even realize the magnitude of how you feel and the hell you have gone through.

I would never wish this in anyone but I am not angry anymore that it happened to me. I have learned SO much about who has my back and what I am capable of. What doesn't kill us makes us stronger :)

0

Share this post


Link to post
Share on other sites

I have learned SO much about who has my back and what I am capable of. What doesn't kill us makes us stronger :)

Amen to all that, girl! Absolutely true, true, true.

They do not call us warrior princesses for nothing. :)

I do know what you mean about doing those things again that I had lost. Driving, comprehending, dancing, cooking, gardening, traveling.... all coming back to me now. Singing at the top of my lungs too! My hubs has his wife back. whoohoo!

I am so delighted for you Ada, and in a few months, I'll compose a 2 year anniversary post myself.

Many blessings on you, hon!!---stay the course-- and continued healing to you! Enjoy yourself; you earned it! xxoo

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
      106,802
    • Total Posts
      932,556
  • Member Statistics

    • Total Members
      64,294
    • Most Online
      3,093

    Newest Member
    Alisha Patel
    Joined
  • Popular Now

  • Topics

  • Posts

    • Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago.  Much of the research done on NCGS is showing activation of cells which are different then in celiac. Placing it still in a gluten related illness spectrum, but an entirely different kind of mode of transport, if you will, then celiac disease. Odd, because I am pretty sure I read that 1st degree relatives of celiacs have a higher prevalence of NCGS suggesting it is, in part, that they are related. But I cannot recall where I read that.  I think my specialist doc is following the right track given that all of this began at the tail end of a 6 week challenge in 2015/16 and I have an increase in IELs.  which, as I've stated before, is a very non-specific finding however. Symptoms continued On a gluten free diet for me months after.  however I was only on it for that 3 months after they found some inflammation. So maybe I didn't give it long enough.  Or like I said, maybe it's something else. We shall see! 
    • Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing. Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!
    • Found this old thread when researching for my daughter who might be having an endoscopy in September. I'm curious to know what the results were?
    • Actually "flour" is not a common ingredient in soy sauce.   Accusing a manufacturer of "lying" about ingredients is a serious charge.  If you actually have proof that this company is not listing ingredients, you should report it to the FDA.
    • Ok guys, I messed up. I ate a bag of marshmallows the same day... low and behold, with wheat starch. I did not expect that. Sneaky sneaky marshmallows with with wheat starch. fml
  • Upcoming Events