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

How We Can Do Something To Help Cure Are Celiac


Will The Thrill

Recommended Posts

Will The Thrill Rookie

Even though i am only 13, listen to what i have to say. everybody has heard of diabetes, so millions of dollars and fund razers are going to help find a cure, but in my school of 700 only 10 kids have ever heard of it. We need to educate the public so more donations and effort to finding a cure will be made. Most people have seen the help us find a cure diabetes commercial, and i think there should be a celiac commercial to. If we educate the public, changes might be made. This is not an impossible task, after all the lactated has been developed to help with lactose intolerance, so something like a glutaid, could be invented to cue gluten intolerance. Tell me if you think this might work or at least help


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Someday I hope they cure "auto-immune" diseases period. I believe Genetic therapy will be the key. I support stem cell research. I may get bashed for saying it. But I do.

Ursa Major Collaborator
Even though i am only 13, listen to what i have to say. everybody has heard of diabetes, so millions of dollars and fund razers are going to help find a cure, but in my school of 700 only 10 kids have ever heard of it. We need to educate the public so more donations and effort to finding a cure will be made. Most people have seen the help us find a cure diabetes commercial, and i think there should be a celiac commercial to. If we educate the public, changes might be made. This is not an impossible task, after all the lactated has been developed to help with lactose intolerance, so something like a glutaid, could be invented to cue gluten intolerance. Tell me if you think this might work or at least help

Will, there is a cure for celiac disease. It is called the gluten-free diet. Diabetics will NEVER be cured, as insulin injections aren't a cure, or else they wouldn't be dependent on insulin all their lives. And still, they'll end up with problems as they get older.

On the other hand, you can be perfectly healthy by just avoiding gluten. No medicine needed.

Lactaid isn't a cure for dairy intolerance either, it is better and healthier to just avoid what passes for milk (pasteurized milk is denatured and dead, and homegenized milk is even worse). If you would drink unpasteurized milk (from certified dairies), you wouldn't need lactaid, as the enzyme that helps you digest milk (and all the other enzymes and friendly bacteria) wouldn't be killed by heat.

Calicoe Rookie
Someday I hope they cure "auto-immune" diseases period. I believe Genetic therapy will be the key. I support stem cell research. I may get bashed for saying it. But I do.

:) I love your posts, Shay. And I see all of the new things you have eliminated this year - wow. I need to start getting serious myself.

Will, your thinking about highlighting public awareness on celiac disease is on the right track. Even if there isn't a "cure", at least public awareness will increase the amount of products and services for us out there.

frec Contributor

Amen! Improved public awareness would really be great, so that people in restaurants and grocery stores could be more helpful. Educating doctors so that people are diagnosed before they develop umpteen other problems would be wonderful. And research for a cure, or at least for the cause, might help a lot of other autoimmune diseases as well as celiac. This discussion is very interesting.

Open Original Shared Link

I think this will get you to the thread. If not, google Celiac: The Autoimmune Connection A quantum leap is coming (July 24)

BallardWA Rookie

Just my two cents but both my naturopath and acupuncturist truly believe that the "lazy" diagnosis of IBS is having its swan song. Awareness is rising and every time I reveal my health challenges to someone I don't know, they always know someone else with the same condition. We all need to share and 'gently' demand recognition. Keep talking this up, soon the lightbulbs will be illuminating over the heads of those who have accepted that lame and catch-all diagnosis, and the "live with it" attitude that is attached to it.

Gemini Experienced
Someday I hope they cure "auto-immune" diseases period. I believe Genetic therapy will be the key. I support stem cell research. I may get bashed for saying it. But I do.

Why would you get bashed for saying you support stem cell therapy? Most people that are against it do not have a clue as to how stem cells are obtained and base their opinions on nonsense information. My sister works in this field and most stem cells are generally obtained from the placenta, after a live birth. People can donate the placenta and I can't see how that would offend anyone. You are right....stem cells are the way to go and it's been proven.

Will.....I can understand why a 13 year old would be upset to have Celiac Disease. However, as other's have said, there is a cure for it and the healthy eating that should result from a diagnosis will carry you well throughout the rest of your life. By the time you reach adulthood, there will most likely be MANY restaurants that have a gluten-free menu as it's becoming so mainstream. I know you don't want to hear this now but having celiac disease is something that becomes easier as you get older and will not impair your ability to have a good time with friends. I would rather research concentrate on diseases like cancer and the horrible ones that waste a human body to nothing because having to change your diet to get your health back is really no big deal. Maybe you should be the spokesperson for your school so others can learn more about it.


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



Celiac.com Sponsor (A8-M):



Lockheed Apprentice
:) I love your posts, Shay. And I see all of the new things you have eliminated this year - wow. I need to start getting serious myself.

Will, your thinking about highlighting public awareness on celiac disease is on the right track. Even if there isn't a "cure", at least public awareness will increase the amount of products and services for us out there.

Dead on. I think public awareness will make more people aware that they have this condition and it will also make the commercial market realize that we are a consumer base to be catered to. This will encourage manufacturer's not to stick gluten in everything and saturate the market with one ingredient and also encourage them to find tastier products especially when they have to start eating gluten free themselves. I really think that gluten sensitivity is a larger issue than has been thought of previously.

Gemini Experienced
Dead on. I think public awareness will make more people aware that they have this condition and it will also make the commercial market realize that we are a consumer base to be catered to. This will encourage manufacturer's not to stick gluten in everything and saturate the market with one ingredient and also encourage them to find tastier products especially when they have to start eating gluten free themselves. I really think that gluten sensitivity is a larger issue than has been thought of previously.

The only problem with public awareness is that many, many people will still live in denial and will not even begin to entertain the idea of eating gluten-free. My whole family are like this and the majority of them all have celiac disease or GS yet they will not hear that they have it and will never go gluten-free. Most of them have several autoimmune diseases, all linked to celiac disease and are on medications to suppress their symptoms but that's OK.....it's better than eating that crazy diet I am on! :rolleyes: Plus you have a medical profession that makes a lot of money from treating symptoms alone and will not be happy if patients disappear after clearing up their health through diet.

I do agree that public awareness is sorely needed but I can see a whole lot of denial going on.

RiceGuy Collaborator

I concur on the awareness thing. One major problem seems to be that doctors listen to drug reps too much, and since drug companies don't have a drug to push on doctors to prescribe, the docs don't hear about Celiac. So they think it's rare, or impossible, or imagined, etc. Thankfully this does appear to be changing, however far too slowly IMO.

On the stem cell thing, I've heard a lot about this. The research into adult stem cells is all-the-more interesting, since the potential there is that the cells can come from the same patient that receives them. So that solves the major ethical dilemma, unless you are against moving cells from one part of the body to another.

Some experts I've heard speak about this include Michel Levesque, MD, Dr. Warren Sherman, and Christian Wilde. You can find info, articles, and audio interviews with these and other researchers Open Original Shared Link.

Calicoe Rookie
The only problem with public awareness is that many, many people will still live in denial and will not even begin to entertain the idea of eating gluten-free. My whole family are like this and the majority of them all have celiac disease or GS yet they will not hear that they have it and will never go gluten-free. Most of them have several autoimmune diseases, all linked to celiac disease and are on medications to suppress their symptoms but that's OK.....it's better than eating that crazy diet I am on! :rolleyes: Plus you have a medical profession that makes a lot of money from treating symptoms alone and will not be happy if patients disappear after clearing up their health through diet.

I do agree that public awareness is sorely needed but I can see a whole lot of denial going on.

Yeah, but denial might be less if it becomes more visible and a lot easier to maintain. But, I do see major opposition, in two words: the wheat industry. Heck, maybe we can convince them to throw wheat into the lot of biofuels to help offset the high production cost of palm oil. (only a joke - I know alternative fuels are a lot more complicated). :P

frec Contributor

Gemini is basically right--just go on the diet and you're OK--if it was caught early enough. But I really want to see more research. I think it would help a lot of related autoimmune diseases. I also want accurate numbers on how common this disease is, and I want doctors to do routine blood testing for celiac on children they way I've heard they do in Italy. At least doctors should be trained to test for celiac whenever patients show malnutrition, diabetes, neuropathy, joint pain, fatigue--you know the list. Many doctors don't know that list yet.

irish daveyboy Community Regular

Hi all,

The intention of the original poster, is to improve awareness of the Disease.

.

From Will.

Even though i am only 13, listen to what i have to say......We need to educate the public so more donations and effort to finding a cure will be made.

'

From Shay.

Someday I hope they cure "auto-immune" diseases period. I believe Genetic therapy will be the key. I support stem cell research. I may get bashed for saying it. But I do.

.

From Ursa.

Will, there is a cure for celiac disease. It is called the gluten-free diet. Diabetics will NEVER be cured, as insulin injections aren't a cure, or else they wouldn't be dependent on insulin all their lives.

.

From BallardWA.

Just my two cents but both my naturopath and acupuncturist truly believe that the "lazy" diagnosis of IBS is having its swan song. Awareness is rising and every time I reveal my health challenges to someone I don't know, they always know someone else with the same condition. We all need to share and 'gently' demand recognition. Keep talking this up, soon the lightbulbs will be illuminating over the heads of those who have accepted that lame and catch-all diagnosis, and the "live with it" attitude that is attached to it.

.

While the following maybe off the original theme of the topic, I think you all should find it interesting.

This will give you all something to think about and maybe open up further discussion.

I know that I personally found it very interesting and enlightening and made me aware

of a whole different angle on Autoimmune Diseases.

.

Open Original Shared Link

.

Best Regards,

David

Guest lorlyn

Hey Will,

I am the mother of a 11 year old with Celiac Diease and I agree with you. There needs to be more awareness of this disease. I had never heard of Celiac untill my daughter got it and I am 44 years old. Nobody I know has ever heard of it either. Any time my family gets the chance to educate people about this disease we do. People at our chuch now know about Celiac as well as people at her school. Just educate as many people as you can. Also welcome to this forum

johnsmom Newbie

after reading your 1st post ...13 and wanting to increase awareness! you go! i felt this funny inspired thing like heck i'm 50 so i've had all these years of pizza and cinibuns and stuff many of this next generation will need to all do differently .

YOU GO ! i can't say it enough . did you see the movie "pass it on" you remind me of the kid . you have stumbled on the whole service to humanity is the best work of life ... thinking... also you should read "when bad things happen to good people".

you are a good person you aren't gonna let this get the better of you ... you can beat it at it's own game..

lisen to jack johnson and john mayer you are bigger than your body...

i applaud you ....do something....i'm gonna see great things from you by the time you are my age i have no doubt of it.

Will The Thrill Rookie
Will, there is a cure for celiac disease. It is called the gluten-free diet. Diabetics will NEVER be cured, as insulin injections aren't a cure, or else they wouldn't be dependent on insulin all their lives. And still, they'll end up with problems as they get older.

On the other hand, you can be perfectly healthy by just avoiding gluten. No medicine needed.

Lactaid isn't a cure for dairy intolerance either, it is better and healthier to just avoid what passes for milk (pasteurized milk is denatured and dead, and homegenized milk is even worse). If you would drink unpasteurized milk (from certified dairies), you wouldn't need lactaid, as the enzyme that helps you digest milk (and all the other enzymes and friendly bacteria) wouldn't be killed by heat.

For all you people who say we will never be rid of it and your bracing yourself for the worst and preparing to cushion yourself if you might spend the rest of your life with celiac think about this,

There is a cure for celiac, it just hasn't been discovered

in the prehistoric days, antibiotics were posible, just not discovered, and with some research and money, it was. Just because no body knew how to cure it, doesn't mean it would never happen

Celiac is that way to, and if we educate the public, we will be rid of it faster

some of you people may just deal with it and do nothing about it, but im not that way, and ive hope ive convinced you not to be that way either

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,610
    • Most Online (within 30 mins)
      7,748

    wonderproductions
    Newest Member
    wonderproductions
    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

    • itsdunerie
      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. 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:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • 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.