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

Celiac Awareness


Crayons574

Recommended Posts

Crayons574 Contributor

So, since knowing I've had a problem with gluten, I've become very passionate (naturally) about being gluten free. I feel like I want to share with everyone about the awareness of Celiac Disease and how really, no one, should be able to digest gluten, because it seems we just weren't made to eat it. I am just wondering how you all go about speaking up about being Celiac or how to spread the knowledge of gluten-free living without writing a book or being famous?


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



Celiac.com Sponsor (A8-M):



celiac-mommy Collaborator

I think you do it very carefully. You can try what I've done, talk to people who will listen, start with friends and family. Be careful not to preach though, I think it tends to turn people off. When someone asks you how you're doing or what you've been up to, share how you were sick, how going gluten-free has changed your life and perspectives, if they have questions, go from there. Pretty soon, they will be coming to you for advice and information. More than likely, each of those people know at least 1 person or will meet at least 1 person with Celiac or allergy, they will pass on your knowledge or send them your way. I am the go-to person in my circle and the circle has extended quite a bit in the last few years.

kbdy Apprentice

I wish I knew how to get it out there more. I've tried all our local newspapers & not one is interested in doing an article about Celiac awareness. I'm really trying to get it out there b/c I've only heard of one other child in our area that has it. If someone has a magical answer, I'd love to hear it :)

no-more-muffins Apprentice
So, since knowing I've had a problem with gluten, I've become very passionate (naturally) about being gluten free. I feel like I want to share with everyone about the awareness of Celiac Disease and how really, no one, should be able to digest gluten, because it seems we just weren't made to eat it. I am just wondering how you all go about speaking up about being Celiac or how to spread the knowledge of gluten-free living without writing a book or being famous?

I feel the same way. I hope I am not driving all my family and friends bonkers with all my talk of gluten. I just know so many people who could be suffering bad symptoms from eating gluten, and I want them to be healthy. I guess you just have to be willing to speak up, but also willing to respect other people's opinions. It is definitely a fine balance. I am trying to find it as well.

Takala Enthusiast

You can try blogging about it, a lot of on line sites have opportunities for that.

You also have to accept that the majority of people actually can eat the stuff and it doesn't bother them. Of the ones who can't eat the stuff and shouldn't be, a certain percentage just can't handle the thought of changing their diet, and will be in denial. They will not change their ways no matter how you write of it. Another small percentage will be intent on sabotaging you because they get their jollies being cranks on the internet - I don't know if you read through the comments section on the piece from the NYT blog on the increased incidence of celiac last week, but even they had a few of those types of comments saying that people were just making it up. I've run into some others here and there, but that is just the way it is on the internet. There's another board where several of the highest ranked posters have this opinion that gluten is really bad for everyone, and I think this is not credible from a scientific standpoint, even if it is their personal opinion, and I don't want to fall into that mindset because this is an auto immune disease, and it's not a universal experience. I also know a board where the moderator(s) insist that diet does not have anything to do with disease. And it's a pretty bizarre argument.

But that doesn't mean that there are not people out there just totally confused and waiting for the chance occurrence of reading about how gluten affects the digestive tract of some people and causes them all sorts of strange symptoms.

I am a bit concerned that with the increased use of Genetically Modified plant breeding, we could be opening up a whole hornet's nest of possible bad outcomes.

greennutritionist Newbie

Since I have read "Dangerous Grains" by James Braly and Ron Hoggan I learned that not only Celiac people suffer, but anybody else can have any health challenges as well.

I have a severe case of arthritis, and my doctor told me that I was a little young for that (I'm 48). Since I have read this book, my feelings are that Gluten might be the culprit.

I have been gluten free since 6 month now and I intend to do it untill I see results from the arthritis.

I have cheated a little while on vaccation in France while visiting my mom, bread, crepes etc... and my left hip was hurting more than usual, could it be because of that, may be! Although I know that the level of Gluten are not the same between France and U.S.A and Canada (France beeing the lightest).

I advise anyone to read that book.

There is 1 in 103 people today affected by Gluten and only a few are diagnosed.

I read somewhere someone writting about GMO's might have contributed to this condition. 50 years would not have contributed for so many people today to have this Gluten intolerence....

hhuummmmm!!!!!!! I'm thinking, could it be it?

mushroom Proficient
I am a bit concerned that with the increased use of Genetically Modified plant breeding, we could be opening up a whole hornet's nest of possible bad outcomes.ont

New Zealand is pretty good with its "clean, green" image, but it takes eternal vigilance not to smudge that up with GMO. It's hard to get people involved in the issue and the Green political party is pretty much regarded as a bunch of kooks, but so far we have managed to contain the experimental trials to just that, and not let loose all this GE stuff into the wider community. We have an ideal situation to remain GM-free, being isolated by ocean, and being an agricultural country I believe it is very important to keep our strains pure. I can eat the non-GM corn in NZ, but can't eat it in the U.S. I can eat the regular (free range) beef in NZ but have to eat organic here. My hubby and I are in great disagreement about this issue; I arranged a speaker for our Probus Club on the greens side of the issue; he had someone from the Ag College speak to his group on GM :unsure::lol:


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
mysecretcurse Contributor

Talk talk talk! We must keep the dialogue going and educate everyone we come across about this disease! I never heard of this disease til I learned about it from a friend who has it in her family and discovered I had it! This saved my life! I tell everyone I know about it because you never know who could be suffering unknowingly with it, like I was!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748

    Tubbybooboo
    Newest Member
    Tubbybooboo
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.