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.

  • 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 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    3. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748

    donnawebb265
    Newest Member
    donnawebb265
    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
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • 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.