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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,248
    • Most Online (within 30 mins)
      7,748

    Tc clark
    Newest Member
    Tc clark
    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

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.