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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.