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

Hello And A Big Thank You


spunky

Recommended Posts

spunky Contributor

Hello!

I just wanted to tell you all that I discovered this message board a while back and have found it immensely helpful to me. I am a mid-fifties female. Beginning around 15 years ago, I felt my health was taking a downward spiral, read about gluten and thought maybe it fit my situation. I went off of gluten for a while, got no better, and decided maybe that wasn't the problem afterall, but continued on with worsening problems, especially rapidly emerging intestinal issues, for the next 5 years. I didn't know if it was aging or what to think, but I wasn't very well and I became inclined to try to spend most of my time at home, more and more.

Since I absolutely hate doctors, it was out of the question for me to consult one. I've never had any luck with doctors in the past, and as a matter of fact, they have mostly done me more harm than good. So I was on my own.

After running across this message board about a year ago, I began to see that my previous effort to attempt a gluten free trial was not done correctly at all, and also I was looking for improvement way too soon than it was likely to happen.

I tried it again 7 months ago. Those past 7 months were like a bumpy roller coaster ride, especially the first 3 of those months, but because I kept coming here often and consulting information and even reassurrance I would derive from your experiences that I saw here at this board, I knew much better what to expect this time, how to avoid mistakes, and most importantly, to KEEP going for a while. Now in my 8th month gluten free, I can finally see the light! I feel better than I can ever remember feeling before. It's amazing to see the difference. I thought I was better just a month ago, but now I'm seeing that apparently it's been a long time since I knew what it was like to feel really good!

I am so grateful to all of you here whose shared experiences walked me through many tearful times, times when I thought I wasn't getting better, times when I had no where else to turn to. I cannot thank you enough for sharing your experiences. I would never have continued trying this for such a long time before; I expected results in just a couple of weeks and didn't realize all of the hidden traps of cross-contamination and questionable ingredients.

I think you all should know that there are probably others besides myself who lurk here once in a while, and you probably don't know how many people you have helped by sharing your experiences in a public forum like this. You've helped me more than any doctors ever did in my past, and I'm so happy to be gluten free and feeling perfectly normal and well now, besides carrying a wealth of knowledge to help me to know which ingredients or situtaions I need to avoid. I can't thank you enough. You are all doing a very nice thing by being here!


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Spunky, welcome to the board! I, too, have found a wealth of information here and have managed to make some good friends along the way. I'm glad it's working for you and I hope you stick around for a while and share your experiences and just have some fun with us!!

jerseyangel Proficient

Hi Spunky--what a wonderful story! I'm very glad you found us, and that we could be of so much help to you :)

Your story also proves what we say often to people confused about whether to persue a formal diagnosis, for whatever reason. You don't need a doctor's permission or a prescription to go on the gluten-free diet--if you feel better this way, then you have the answer for you.

I wish you continued good health--and hope you'll stick around and post more often :)

Ursa Major Collaborator

Hi Spunky, and welcome to this board! I am glad you've finally come 'out of hiding', and I'm very glad that you have been helped so much by reading here.

It's great to see that at least one person our age has gotten completely better on the gluten-free diet. Because this far I haven't seen anybody else who by their fifties had not developed any other issues because of being misdiagnosed for such a long time. Myself included, of course.

spunky Contributor
Hi Spunky, and welcome to this board! I am glad you've finally come 'out of hiding', and I'm very glad that you have been helped so much by reading here.

It's great to see that at least one person our age has gotten completely better on the gluten-free diet. Because this far I haven't seen anybody else who by their fifties had not developed any other issues because of being misdiagnosed for such a long time. Myself included, of course.

Guhlia Rising Star

Welcome, Spunky!!! So glad you're beginning to feel better.

Canadian Karen Community Regular

Hi Spunky!

Thank you for the reminder that not only the ones who we see and post with are benefitting from our knowledge, but the myriad of silent lurkers who are reading and listening and learning behind the scenes. I am so glad things that you have learned on here have made such a difference to your life!

Hope to see you around more!

Hugs.

Karen


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Welcome to the forum and thank you for sharing such a wonderful story. I am so glad that you have gotten so much better.

ravenwoodglass Mentor

Welcome to the boards and to good health. I do so hope you will stick around and want you to know how valuable your story is to the folks who are in the early stages of living gluten free and getting frustrated with the ups and downs and all the 'little' things that are so important like CC. I am going on 4 years gluten-free and am still amazed how much I continue to improve. It can be a long slow process for so many of us and your telling your story is so helpful. Thanks for sharing and again welcome.

spunky Contributor
Hi Spunky, and welcome to this board! I am glad you've finally come 'out of hiding', and I'm very glad that you have been helped so much by reading here.

It's great to see that at least one person our age has gotten completely better on the gluten-free diet. Because this far I haven't seen anybody else who by their fifties had not developed any other issues because of being misdiagnosed for such a long time. Myself included, of course.

AndreaB Contributor

Welcome Spunky! :D

Thank you for sharing your story. Hope to see you around some other threads as you get comfortable posting and sharing your knowledge. :)

spunky Contributor

You're all very kind! I wanted to say that Urusula, your posts have been especially informative. I'm sorry things are going so slowly for you and you've had so many difficulties, and hope things just get better and better for you.

One of the most helpful insights for me was to see that gluten reactions might not be too immediate. I discovered in my own case, that accidental glutenings didn't cause problems until around 3 or 4 days later, and then set me into a bad way for maybe a couple of weeks, or close to it. Back 5 years ago when I tried gluten free, I had no idea that symptoms could be so delayed, and I really never could figure out what was causing continued symptoms, besides the fact that, as I said before, I can look back now and see where I was never entirely away from gluten enough to see consistent results.

OVer the past month, I've been feeling really good. My mood has been elevated so much too. My only error was with beer. Since I'm not a beer drinker normally, I just didn't think (DUH!). My neighbor came over to visit one evening and brought some expensive beer with her. I told her thank you but I just don't like beer, but she insisted I just taste it, because the stuff was so expensive I might just find that I did like it. Well, to make her happy, without thinking, I did taste it. I didn't like it and had only a gulp. But later that evening it just hit me what I'd done. I was afraid I would get sick in 3 or 4 days, and stay that way for the predictable 8-12 days or more. But it hit within about 24 hours, very mild this time, and lasting only a couple of days. BEsides that one time, I have felt like a totally new person!

Again, I'm thankful to all (out of the closet here now!), and have gotten so much information that's helped me to stick with it long enough and know how to be more careful. Ursula, I hope things improve all around for you, and again want to thank you personally for the helpful insights I've gotten from all the posts you've written here.

Jestgar Rising Star

Hi Spunky,

I lurked for a while too. I finally felt kind of guilty and started posting.... :)

AndreaB Contributor
Hi Spunky,

I lurked for a while too. I finally felt kind of guilty and started posting.... :)

Jestgar,

I grew up in South Puget Sound. I'm now down by Vancouver. Are you aroung the Seattle area?

elye Community Regular

Spunky, I want to thank you for such a positive story! I recently read a post from a member who is leaving the board due to frustration with the way some posts have been going, and I was feeling a bit sad. Good timing, my reading your post of appreciation! I've been uplifted now. We'll hear from you on further threads... :)

Rachel--24 Collaborator

Spunky,

I'm so happy for you! I hope you continue to feel better and better in the weeks to come. Thanks for sharing your story. :)

rinne Apprentice

Thanks for sharing your story Spunky, great to know that persistence pays off. :)

Rikki Tikki Explorer

Welcome Spunky! :D:D:D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748

    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.