Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Last year I posted on here with a bunch of crazy symptoms wondering if anyone dealt with the same thing. After 18 months of massive body issues, I believe we finally have a diagnosis. And after doing tons of research, I've discovered that people who struggle with what we think I have also tend to have celiac disease. So, I just wanted to find out if there happens to be anyone else on here who has been diagnosed with dermatomyositis?? It would be nice to know someone else who deals with these 2 health conditions. Marie =) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 .. Marie, I looked it up on Wikipedia and saw that your condition also can go along with interstitial lung disease. Interestingly, right around the time my then-undiagnosed wheat/gluten allergies were at their worst (I'm not celiac; it's an actual allergy), I developed a rare interstitial pneumonia that only responded to steroids. The doc wouldn't call it an autoimmune disease, but it sure acted like one. BTW, I don't have your particular skin condition, but I do contend with excema and rosacea. It's bizarre how these things often overlap. Carolyn On Wed, May 5, 2010 at 9:15 PM, Marie Nelson <marie.nelson wrote: > > > Last year I posted on here with a bunch of crazy symptoms wondering if > anyone dealt with the same thing. After 18 months of massive body issues, I > believe we finally have a diagnosis. And after doing tons of research, I've > discovered that people who struggle with what we think I have also tend to > have celiac disease. So, I just wanted to find out if there happens to be > anyone else on here who has been diagnosed with dermatomyositis?? It would > be nice to know someone else who deals with these 2 health conditions. > > Marie =) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 I have a friend who was diagnosed with dermatomyositis as a teenager. They thought to begin with that she had lupus. All of her organs started shutting down and she spent a lot of time in hospital. She was on massive steroids which destroyed her knees and hips and she had to have them replaced as a teen. And just had her hip replaced again last year. She has had a number of other issues, lymphatic cancer a few years ago, eye problems this year, etc. She hasn't been diagnosed with celiac, but I would not be surprised, it's crossed my mind before. Pam On Wed, May 5, 2010 at 7:15 PM, Marie Nelson <marie.nelson wrote: > > > > Last year I posted on here with a bunch of crazy symptoms wondering if > anyone dealt with the same thing. After 18 months of massive body issues, I > believe we finally have a diagnosis. And after doing tons of research, I've > discovered that people who struggle with what we think I have also tend to > have celiac disease. So, I just wanted to find out if there happens to be > anyone else on here who has been diagnosed with dermatomyositis?? It would > be nice to know someone else who deals with these 2 health conditions. > > Marie =) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 On May 6, 2010, at 12:18 AM, pdw wrote: > She > was on massive steroids which destroyed her knees and hips and she had > to have them replaced as a teen. And just had her hip replaced again > last year. She has had a number of other issues, lymphatic cancer a > few years ago, eye problems this year, etc. She hasn't been diagnosed > with celiac, but I would not be surprised, it's crossed my mind > before. =============== I had a problem with my eyes that was never recognized as an autoimmune issue and an issue with gluten. The only treatment was megadoses of steroids and it too destroyed my hips and knees. I've managed to have surgeries to prevent joint replacement though. When I went gluten free my eye problem cleared up. it was only after I started Dr Fuhrman's autoimmune protocol that my RA cleared up so while I would suggest a gluten free diet, I would also look at more rigorous plans that have been designed for autoimmune diseases. Shez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 I'm to the point where I'm thinking that anyone with an autoimmune disease should try gluten free. Any thoughts? Pam On Thu, May 6, 2010 at 5:54 AM, Sherene Silverberg <sherene wrote: > > > > On May 6, 2010, at 12:18 AM, pdw wrote: > > > She > > was on massive steroids which destroyed her knees and hips and she had > > to have them replaced as a teen. And just had her hip replaced again > > last year. She has had a number of other issues, lymphatic cancer a > > few years ago, eye problems this year, etc. She hasn't been diagnosed > > with celiac, but I would not be surprised, it's crossed my mind > > before. > =============== > > I had a problem with my eyes that was never recognized as an autoimmune > issue and an issue with gluten. The only treatment was megadoses of steroids > and it too destroyed my hips and knees. I've managed to have surgeries to > prevent joint replacement though. > > When I went gluten free my eye problem cleared up. > > it was only after I started Dr Fuhrman's autoimmune protocol that my RA > cleared up so while I would suggest a gluten free diet, I would also look at > more rigorous plans that have been designed for autoimmune diseases. > > Shez > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Thanks for all the feedback Is there a link for Dr Furhman's autoimmune protocol? I'm looking at the potential of seriously high steroid doses plus 12 weeks of methaltrexate. While I did go on steroids last year, the doses weren't quite as high but I was still freaked out about getting " moon face " or that hump on the back of my neck. I'm getting married in 23 days and this whole health thing is just a pain. Oh, and yes, I believe almost anyone can benefit from taking gluten out of their diets. Even if you don't have an auto-immune disease, I believe (here in the US at least) the fact that we subsidize wheat, corn and soy making them cheap for manufacturing is causing much of the absurd health " epidemic, " including the outrageous increase in autoimmune disease. Marie On Thu, May 6, 2010 at 9:38 AM, pdw <pdworkman wrote: > > > I'm to the point where I'm thinking that anyone with an autoimmune disease > should try gluten free. Any thoughts? > > Pam > > > On Thu, May 6, 2010 at 5:54 AM, Sherene Silverberg <sherene<sherene%40cox.net>> > wrote: > > > > > > > > > On May 6, 2010, at 12:18 AM, pdw wrote: > > > > > She > > > was on massive steroids which destroyed her knees and hips and she had > > > to have them replaced as a teen. And just had her hip replaced again > > > last year. She has had a number of other issues, lymphatic cancer a > > > few years ago, eye problems this year, etc. She hasn't been diagnosed > > > with celiac, but I would not be surprised, it's crossed my mind > > > before. > > =============== > > > > I had a problem with my eyes that was never recognized as an autoimmune > > issue and an issue with gluten. The only treatment was megadoses of > steroids > > and it too destroyed my hips and knees. I've managed to have surgeries to > > prevent joint replacement though. > > > > When I went gluten free my eye problem cleared up. > > > > it was only after I started Dr Fuhrman's autoimmune protocol that my RA > > cleared up so while I would suggest a gluten free diet, I would also look > at > > more rigorous plans that have been designed for autoimmune diseases. > > > > Shez > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Here is the Fuhrman's autoimmune protocol: http://www.alternativeratreatments.com/joel-fuhrman-autoimmune-protocol.html Pam On Thu, May 6, 2010 at 11:57 AM, Marie Nelson <marie.nelsonwrote: > > > Thanks for all the feedback > > Is there a link for Dr Furhman's autoimmune protocol? I'm looking at the > potential of seriously high steroid doses plus 12 weeks of methaltrexate. > While I did go on steroids last year, the doses weren't quite as high but I > was still freaked out about getting " moon face " or that hump on the back of > my neck. I'm getting married in 23 days and this whole health thing is just > a pain. > > Oh, and yes, I believe almost anyone can benefit from taking gluten out of > their diets. Even if you don't have an auto-immune disease, I believe (here > in the US at least) the fact that we subsidize wheat, corn and soy making > them cheap for manufacturing is causing much of the absurd health > " epidemic, " including the outrageous increase in autoimmune disease. > > Marie > > > On Thu, May 6, 2010 at 9:38 AM, pdw <pdworkman<pdworkman%40gmail.com>> > wrote: > > > > > > > I'm to the point where I'm thinking that anyone with an autoimmune > disease > > should try gluten free. Any thoughts? > > > > Pam > > > > > > On Thu, May 6, 2010 at 5:54 AM, Sherene Silverberg <sherene<sherene%40cox.net> > <sherene%40cox.net>> > > > wrote: > > > > > > > > > > > > > > On May 6, 2010, at 12:18 AM, pdw wrote: > > > > > > > She > > > > was on massive steroids which destroyed her knees and hips and she > had > > > > to have them replaced as a teen. And just had her hip replaced again > > > > last year. She has had a number of other issues, lymphatic cancer a > > > > few years ago, eye problems this year, etc. She hasn't been diagnosed > > > > with celiac, but I would not be surprised, it's crossed my mind > > > > before. > > > =============== > > > > > > I had a problem with my eyes that was never recognized as an autoimmune > > > issue and an issue with gluten. The only treatment was megadoses of > > steroids > > > and it too destroyed my hips and knees. I've managed to have surgeries > to > > > prevent joint replacement though. > > > > > > When I went gluten free my eye problem cleared up. > > > > > > it was only after I started Dr Fuhrman's autoimmune protocol that my RA > > > cleared up so while I would suggest a gluten free diet, I would also > look > > at > > > more rigorous plans that have been designed for autoimmune diseases. > > > > > > Shez > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 On May 6, 2010, at 12:38 PM, pdw wrote: > I'm to the point where I'm thinking that anyone with an autoimmune disease > should try gluten free. Any thoughts? ======= totally agree Shez Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2010 Report Share Posted May 6, 2010 Agreed. ... and vegan. Deborah I'm to the point where I'm thinking that anyone with an autoimmune disease should try gluten free. Any thoughts? Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2010 Report Share Posted May 9, 2010 Marie? I am brand new to typing into this group? I did learn something about lungs a while back. MSM works great for it.. and it even helps with pain levels as in joints and Fibromyalgia.. and muscle pains. and any soft tissues,, It's seriously awesome.. Rita , Marie Nelson <marie.nelson wrote: > > Last year I posted on here with a bunch of crazy symptoms wondering if > anyone dealt with the same thi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2010 Report Share Posted May 11, 2010 I agree as well since there is such a connection. Gluten still causes all kinds of leaky gut issues (dairy too), but some people just don't have the genes to have the antibodies to TTG. Amanda , Sherene Silverberg <sherene wrote: > > > On May 6, 2010, at 12:38 PM, pdw wrote: > > > I'm to the point where I'm thinking that anyone with an autoimmune disease > > should try gluten free. Any thoughts? > ======= > totally agree > > Shez > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.