Beyond Celiac Announces Innovative Collaborative Research Effort: Go Beyond Celiac Digital Community

[Scott Adams]

Beyond Celiac has launched Go Beyond Celiac™, a digital community that will accelerate treatment options beyond the gluten-free diet. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and to participate in research themselves.

View the full article

[Victoria1234]

2 hours ago, admin said:

Beyond Celiac has launched Go Beyond Celiacâ¢, a digital community that will accelerate treatment options beyond the gluten-free diet. Go Beyond Celiac is designed to make it easier for people with celiac disease to share their stories at a population level with researchers and to participate in research themselves.

View the full article

This is pretty amazing to me. Does this mean they feel that way after being diagnosed? Because by definition people with celiac disease are diagnosed. Is this before they go gluten-free?

people with celiac disease report a very high burden of disease, comparable to end stage renal disease

 

[Scott Adams]

My take on it is even after a gluten free diet many will not fully recover, and some will have additional complications. When not on a gluten-free diet the risk of complications is very high indeed...

[Victoria1234]

But to compare having celiac disease to kidney failure? Kidney failure means death is immenent unless you get a transplant, right?  I thought celiac disease was not so hopeless! Am I in denial?

[Gemini]

1 hour ago, Victoria1234 said:

But to compare having celiac disease to kidney failure? Kidney failure means death is immenent unless you get a transplant, right?  I thought celiac disease was not so hopeless! Am I in denial?

No, you are not in denial!  I think that these studies often involve those who are not doing as well as they would like but that can be from so many different reasons. They may be making mistakes with the diet, they may have other health issues that come into play or just are not adjusting to the diet very well.  Sometimes it surprises me how many resent having to follow a medical diet that seems insurmountable to them and that can add stress....and we all know what stress can do.  I actually filled out the survey to let them know there are some of us with multiple AI disorders that are doing pretty well and are having little to no problems following the diet. I think a lot of it is perspective. I am just one who refuses to let all this do me in. I worked hard at healing and although things are not perfect, most of my grief is from my other AI problems and not Celiac.

My brother had kidney disease from Type 1 diabetes and believe me, there is no comparing Celiac to that.  With Celiac, there is a lot of hope because we can get better from a diet.  My brother was facing a kidney transplant but he died before that happened. I think he had Celiac also but he was in deep denial. Not following a gluten-free diet when you may have Celiac will definitely rob you of quality of life!

[Victoria1234]

10 hours ago, Gemini said:

No, you are not in denial!  I think that these studies often involve those who are not doing as well as they would like but that can be from so many different reasons. They may be making mistakes with the diet, they may have other health issues that come into play or just are not adjusting to the diet very well.  Sometimes it surprises me how many resent having to follow a medical diet that seems insurmountable to them and that can add stress....and we all know what stress can do.  I actually filled out the survey to let them know there are some of us with multiple AI disorders that are doing pretty well and are having little to no problems following the diet. I think a lot of it is perspective. I am just one who refuses to let all this do me in. I worked hard at healing and although things are not perfect, most of my grief is from my other AI problems and not Celiac.

My brother had kidney disease from Type 1 diabetes and believe me, there is no comparing Celiac to that.  With Celiac, there is a lot of hope because we can get better from a diet.  My brother was facing a kidney transplant but he died before that happened. I think he had Celiac also but he was in deep denial. Not following a gluten-free diet when you may have Celiac will definitely rob you of quality of life!

I am so sorry about your brother.

Thank you for your response. I really appreciate it. It just did not make any sense to me, but now it does. These Articles  tend to amplify the bad and the ugly and not emphasize the good.

[Gemini]

7 hours ago, Victoria1234 said:

I am so sorry about your brother.

Thank you for your response. I really appreciate it. It just did not make any sense to me, but now it does. These Articles  tend to amplify the bad and the ugly and not emphasize the good.

Thank you.......I do really miss him. 

That is what my take is and it might be because those who are doing well are not being heard from as they are just going about their lives and aren't in a doctors office that much.  Doctors are only going to report on those who are having difficulties but they don't seem to differentiate why that might be. Lots of us have other AI problems and those come into play also.  It all may not be from Celiac Disease itself.  Doctors are also not really good with dietary treatments anyway because they offer little support. They always think you need a pill to get better.  What I realized after seeing a new PCP last year, one I did not like, is that they seem to think you can't do this well yourself and need to see a doctor all the time for management with Celiac.  I guess we are good for business.    I just am sick and tired of all the negative with this disease. I would rather eat gluten free than go through any treatment they offer because I just can't imagine putting wheat in my mouth ever again, even if they did come up with a magic pill.  It just doesn't seem like the right thing to do!  I will be interested to see if other people join to report positive results and mostly stable health.

[Victoria1234]

4 hours ago, Gemini said:

I will be interested to see if other people join to report positive results and mostly stable health.

I hope they do. I certainly have! The surveys were very easy to do.

[Gemini]

I just wanted to say I hope everyone, especially the newbies to Celiac, go on line and join Beyond Celiac.  Even if you don't fill out the surveys, which are kind of fun to do, there is a WEALTH of information on everything Celiac, including recipes and how to get started on the diet and manage it well.  Between Celiac.com and Beyond Celiac, you can probably get any questions answered that you may have and find information you didn't think about.  It's a great site!