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
      131,746
    • Most Online (within 30 mins)
      7,748

    Hughesy
    Newest Member
    Hughesy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.