Interesting New Research Being Done At U Of C

[Lynayah]

Interesting new research being done at the University of Chicago:

Open Original Shared Link

[Ahorsesoul]

I have to laugh, just how in the world do they know that 97% of celiacs are undiagnosed! This is on their website: Open Original Shared Link

How did they come up with this number, a survey? Hello sir, are you an undiagnosed celiac patient? Why yes I am but no one knows it yet.

Updated: I did email them asking how they came up with this number. Maybe they mean that 97% of celiac patients are self-diagnosed which I think is about right.

[YoloGx]

  On 1/9/2010 at 1:10 AM, Lynayah said:

Interesting new research being done at the University of Chicago:

Open Original Shared Link

It is always wonderful to hear that more research on celiac is being proposed. Thank you for the link!

I had no idea however that there were mice that were affected by celiac. Are there?? I wonder what is done to either find or create that state in mice. I also wonder why more research concerning celiac and severe gluten intolerance isn't being done with actual humans.

Meanwhile I think the "97% undiagnosed" part is based on the fact that when doctors actually test for people who have celiac, they consistently find that its one in 133 who has it. However not that many people in our country actually have been diagnosed with it since the medical establishment isn't looking and most folks are ignorant or uninformed about the subject.

Even more folks are probably affected by severe gluten intolerance in my opinion. I say this based on the fact so many here on celiac.com cannot tolerate gluten despite having been tested and found not to officially have celiac.

Bea

[Lynayah]

  On 1/9/2010 at 7:38 AM, yolo said:

It is always wonderful to hear that more research on celiac is being proposed. Thank you for the link!

I had no idea however that there were mice that were affected by celiac. Are there?? I wonder what is done to either find or create that state in mice. I also wonder why more research concerning celiac and severe gluten intolerance isn't being done with actual humans.

Meanwhile I think the "97% undiagnosed" part is based on the fact that when doctors actually test for people who have celiac, they consistently find that its one in 133 who has it. However not that many people in our country actually have been diagnosed with it since the medical establishment isn't looking and most folks are ignorant or uninformed about the subject.

Even more folks are probably affected by severe gluten intolerance in my opinion. I say this based on the fact so many here on celiac.com cannot tolerate gluten despite having been tested and found not to officially have celiac.

Bea

Hi, Bea: Yes, I agree that this 97% draws merit from the current stats of 1 out of 133. It's quite an eye opener to see it described with the 97% slant, isn't it? It says the same thing (or almost the same?) yet gives it a whole new perspective.

I'm a little confused about the exact math they use, though. Ahorsesoul: I hope they answer your letter. I'd love to hear what they say. The next time I'm there, I'll ask as well

Bea, I agree with your gluten intolerance thoughts as well. I'm one of those folks who is "lucky" (HA!) enough to be so highly symptomatic (gliadin, gliadin everywhere, and not a drop to eat!) that U of C has asked me to be part of their research.

Seriously though, I do hope they learn a lot from us intolerant folks.

[YoloGx]

  On 1/10/2010 at 2:58 PM, Lynayah said:

Hi, Bea: Yes, I agree that this 97% draws merit from the current stats of 1 out of 133. It's quite an eye opener to see it described with the 97% slant, isn't it? It says the same thing (or almost the same?) yet gives it a whole new perspective.

I'm a little confused about the exact math they use, though. Ahorsesoul: I hope they answer your letter. I'd love to hear what they say. The next time I'm there, I'll ask as well

Bea, I agree with your gluten intolerance thoughts as well. I'm one of those folks who is "lucky" (HA!) enough to be so highly symptomatic (gliadin, gliadin everywhere, and not a drop to eat!) that U of C has asked me to be part of their research.

Seriously though, I do hope they learn a lot from us intolerant folks.

Thankfully celiac is getting more noticed. Am glad to hear that severe gluten intolerance is starting to be too.

I was reading the info below your posts and noticed you also have muscle and joint aches and pains. Its one thing that has stayed with me--fragile joint connections, try as I might old injuries still plaque me if I am not careful. I have to exercise gradually. I walk nearly every day and when am in good shape do push ups and use my Pilates machine, but can't always due to old injuries in my elbow/shoulder area from an old car accident. Its so frustrating! Am too hyper mobile. Seems a family trait. It would be nice to figure out if there was some kind of supplement(s) one could take to counteract this more effectively. I am much better overall being off all trace gluten and taking minerals and co-enzyme B complex and vit. D etc., but still must be careful. Latest discovery for me of late is to increase collagen and silica. Am actually drinking green tea to help with this... Am wondering if the trade off of now having caffeine is worth it...

Meanwhile let us know more about this study if you get a chance!

Bea

[GottaSki]

  On 1/9/2010 at 1:10 AM, Lynayah said:

Interesting new research being done at the University of Chicago:

Open Original Shared Link

Great info -- here is a video about their work

Open Original Shared Link

[Lynayah]

  On 1/10/2010 at 8:02 PM, yolo said:

Thankfully celiac is getting more noticed. Am glad to hear that severe gluten intolerance is starting to be too.

I was reading the info below your posts and noticed you also have muscle and joint aches and pains. Its one thing that has stayed with me--fragile joint connections, try as I might old injuries still plaque me if I am not careful. I have to exercise gradually. I walk nearly every day and when am in good shape do push ups and use my Pilates machine, but can't always due to old injuries in my elbow/shoulder area from an old car accident. Its so frustrating! Am too hyper mobile. Seems a family trait. It would be nice to figure out if there was some kind of supplement(s) one could take to counteract this more effectively. I am much better overall being off all trace gluten and taking minerals and co-enzyme B complex and vit. D etc., but still must be careful. Latest discovery for me of late is to increase collagen and silica. Am actually drinking green tea to help with this... Am wondering if the trade off of now having caffeine is worth it...

Meanwhile let us know more about this study if you get a chance!

Bea

Bea, I feel your pain. Have you tried going without dairy altogether? Also, might you be available to talk privately?

[YoloGx]

  On 1/11/2010 at 12:58 AM, Lynayah said:

Bea, I feel your pain. Have you tried going without dairy altogether? Also, might you be available to talk privately?

I have previously gone off all dairy. Now seem to do well with yogurt I make myself and ferment for roughly 24-26 hours to get rid of all the lactose. I believe the casein is OK. Maybe though I should go back to no cheese and eggs at all however...The cheese can get addicting, never a good sign. I was off all grains for 10 months and now use brown rice fairly regularly.

Meanwhile, certainly -- let's "talk."

Interestingly enough by the way my mother was part of a celiac sprue study at the University of San Francisco back in the late teens and through the twenties of the previous century. Unfortunately the results of the study were lost however.

Unfortunate for me when I came along doctors still thought one grew out of this condition, so they put me back onto grains when I was 4 years old--since grains no longer made me stop growing (as they had when I was an infant). Of course back then here in the States they didn't know (or should I say "accept"?) that it was the gluten (gliadin) at fault.

The good thing now with the advent of the Internet is that studies such as these are less likely to get "lost." Interestingly many of the things they are discovering now were previously discovered back then (at least according to my mom)! So I guess that has got to say something about the scientific validity of it all, eh??

[Lynayah]

  On 1/11/2010 at 1:49 AM, yolo said:

I have previously gone off all dairy. Now seem to do well with yogurt I make myself and ferment for roughly 24-26 hours to get rid of all the lactose. I believe the casein is OK. Maybe though I should go back to no cheese and eggs at all however...The cheese can get addicting, never a good sign. I was off all grains for 10 months and now use brown rice fairly regularly.

Meanwhile, certainly -- let's "talk."

Interestingly enough by the way my mother was part of a celiac sprue study at the University of San Francisco back in the late teens and through the twenties of the previous century. Unfortunately the results of the study were lost however.

Unfortunate for me when I came along doctors still thought one grew out of this condition, so they put me back onto grains when I was 4 years old--since grains no longer made me stop growing (as they had when I was an infant). Of course back then here in the States they didn't know (or should I say "accept"?) that it was the gluten (gliadin) at fault.

The good thing now with the advent of the Internet is that studies such as these are less likely to get "lost." Interestingly many of the things they are discovering now were previously discovered back then (at least according to my mom)! So I guess that has got to say something about the scientific validity of it all, eh??

I wonder if the research was inconveniently lost . . . or conveniently lost. What a shame that the research disappeared, both for you as well as the celiac community.

[GottaSki]

  On 1/16/2010 at 2:17 PM, Lynayah said:

I wonder if the research was inconveniently lost . . . or conveniently lost. What a shame that the research disappeared, both for you as well as the celiac community.

The internet has allowed ordinary individuals to take more control of their medical destiny - we can now circumnavigate the strength of the drug companies to find all the potential ways to improve our health - outside of the prescription drug possibilities.

Please do not misunderstand - for many ailments medical research has produced amazing results - when diagnosed with cancer a person is very fortunate to be living in a day that has seen so much discovery - yet somewhere along the line the focus became selling drugs rather than curing or managing conditions that are curable or manageable with the correct food for each body and exercise!

[YoloGx]

  On 1/16/2010 at 2:17 PM, Lynayah said:

I wonder if the research was inconveniently lost . . . or conveniently lost. What a shame that the research disappeared, both for you as well as the celiac community.

I agree. I wonder what the story was about all that. It seems strange that such a long research project should get lost. At the time my mother was considered an oddity since she was intelligent and had energy despite the sprue and a low thyroid--at least that is what she says as to why she was paraded in front of the young interns.

[Darissa]

Thanks for the good info! I am excitied about all the new research being done on celiac disease.

[Lynayah]

  On 1/21/2010 at 11:35 PM, Darissa said:

Thanks for the good info! I am excitied about all the new research being done on celiac disease.

You are welcome, Darissa! Thank YOU for the thanks.