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

Blabbing To Everyone I Know


Robina

Recommended Posts

Robina Contributor

Before I went gluten free... my symptoms were so weird... and fierce... but now most seem to be manageable... the emotional aspect (and the anger I feel about this disease not being recognized the way it should be) has been the hardest for me to deal with... but basically I am talking about Celiac's with every person I meet... and in my profession... I meet new people every day... So I guess that's how I'm dealing with the emotional aspect...

On a similar yet different note... my brothers came up to visit today... and I talked with them for hours... explaining to them that the disease is hereditary... told them what my symptoms were... but also explained that the symptoms vary from person to person... and then I told them specifically how going gluten free has helped me (e.g. the symptoms that went away or greatly reducted)... I wanted them to realize that due to the fact that they also experience similar GI problems, etc... that they should be tested... especially since it's a simple test and then the dietary changes... one of my brother's decided he would forego the test and just try the diet for awhile (no medical insurance like me) while the other brother's wife gave me her email address and told me to send her the info on testing, etc... and the link to this board so she can force him to look into this further... lol...


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Robina, I totally understand about babbling. I babble to everyone that will give me an ear. When we go out to dinner, my husband has to remind me to talk about something else LOL. I guess, even after being gluten-free for over 2 1/2 years, that I just don't want others to end up like I did. If my babbling helps a few people then it is worth it. So may your always talking about it help others.

kbtoyssni Contributor

I talk about it all the time, too. Not too much, but just enough so that most people I come in contact with on a daily basic coud define celiac and some of the major symptoms. I don't want to get annoying, but I think it's important that people are aware of the disease. A friend mentioned to me several years ago that she had celiac. I was curious about it so I looked it up at the time and then forgot about it. Years later I went on an elimination diet and realized wheat was a problem. I never would have made the jump to celiac if I hadn't heard about it several years before. And I'm sure I'd still be sick now because my doctors certainly weren't going to make the jump to celiac, either.

flagbabyds Collaborator

yeah i completely agree with the babling thing i talk about it ALL the time, especially when i am away from home at camp and such, the people i lived with at camp now all know so much about it it's pretty cool how many lives you can change with just talking about it.

emcmaster Collaborator

Hi Robina,

It is so tempting to talk about celiac to everyone you know and meet, isn't it? One thing I think we have to remember is that while we find it interesting, most other people don't. My husband has had to pull me aside (discreetly, of course) and let me know that I'm talking about it too much when he sees our friends' eyes glaze over.

It's human nature to talk about what is going on in your life with your friends and loved ones, and being gluten-free is a BIG part of our lives. I try very hard to gauge people's reactions to the short, simple answer I give for what celiac is. If they ask involved questions, I'll tell them a little more. If they ask questions that come off as them just trying to be polite, I say very little.

I guess I try to think of it the same way as someone who had cancer and was undergoing treatment. If someone asked them how things were going, they'd probably keep the medical terms to a minimum and just give an overview. I try to do the same thing because as interested as I am in my disease, I know 99% of my acquaintances are only being polite when they ask.

Just a little unsolicited advice. :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    2. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    3. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    4. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      High DGP-A with normal IGA

    5. - trents replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Finding gluten free ingredients


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    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

    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
×
×
  • 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.