Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

2 Years gluten-free!

adab8ca

Recommended Posts

adab8ca Enthusiast
adab8ca
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cap6 Enthusiast
cap6
Posted

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

adab8ca Enthusiast
adab8ca
Posted
  • Author

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!

GottaSki Mentor
GottaSki
Posted

Happy Anniversary to you!

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

Ranne10 Rookie
Ranne10
Posted

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!

IrishHeart Veteran
IrishHeart
Posted

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

IrishHeart Veteran
IrishHeart
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mommyof4 Apprentice
mommyof4
Posted

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!

gatita Enthusiast
gatita
Posted

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!

Momma Bear Rookie
Momma Bear
Posted

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!

adab8ca Enthusiast
adab8ca
Posted
  • Author

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 :)

IrishHeart Veteran
IrishHeart
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.