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

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

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

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

Happy Anniversary to you!

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

Ranne10 Rookie

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

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

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

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

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

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

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

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.

  • 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. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

    2. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748

    LizzieE
    Newest Member
    LizzieE
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
×
×
  • 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.