[gabby]

Just came across this interesting article linking bone loss and celiac disease and am posting the link:

http://news.bbc.co.u...lth/8295438.stm

[chasbari]

My initial reaction was immediately "Another excuse to prescribe a drug for intervention." I am at odds with my rheumatologist about this issue at present as my bone scans showed loss enough to be of concern. He immediately wanted to put me on Boniva or Fosamax to which I declined. It took me decades to reach this point and I told him I was going to wait 24 months to see what happens to those numbers without pharmaceutical intervention. If there is no improvement then and only then will I consider drug therapy. I had a hard time walking back in November With proper gluten-free diet and exercise I am no longer experiencing any morning gel time and can run and exercise with heavy weights. I have found every time I get treated with drugs it masks symptoms that are trying to tell me something. I often wonder if I had obediently taken the DMARDS and NSAIDS if I would have survived long enough to finally get a correct DX of celiac as no one believes there is a link between my RA and my celiac. Since treating the celiac the RA and my other autoimmune problems are melting away. Just saying.

[gabby]

I'm just glad to see celiac disease getting some prominent space in a widely read publication. And I'm happy to see that researchers are taking an interest in figuring out how celiac disease works. It gives me a wee bit of hope that someone out there will bump into some new findings and come up with a treatment or a cure. Just my bit of hoping.

[chasbari]

Gee, not to be flippant but my treatment has been relatively simple. Never eat gluten again. In adhering strictly to this my health has returned, or should I say, reached a level that I never enjoyed in my entire life. I now chose to live this way and the physical benefits are beyond my comprehension. Is it hard to be in a gluten eating household in a gluten eating world with gluten filled ads and smells and all that? You bet. Does it ever get me down every once in a while? I would be lying if I said no. But, the benefits so outweigh the drawbacks that it is well worth the effort every single day. There is the cure. So many other diseases are so much more brutal to fight. Cancer, Diabetes, heart disease. It makes this one seem like a walk in the park. And, yes, I had many complicating factors and have dealt with cancer and RA and other autoimmune diseases so I am not making light of anyone who has difficulty dealing with this disease. After a lifetime of doctors it is a relief to actually know what I am dealing with and to also realize there is a way to deal with it.
CS

[happygirl]

Thanks for posting this new info, Gabby!

[Ahorsesoul]

Today I was talking to Mayo Clinic about getting my dd in to see Dr Murray who treats celiac. One of the questions was had she had a bone density test done. She hadn't but mine done in 2000 showed osteopenia. I'm hoping he will see her. I'm interested in any info I can get from Mayo.

[miles2go]

Ahorsesoul, on Oct 8 2009, 07:20 PM, said:

Today I was talking to Mayo Clinic about getting my dd in to see Dr Murray who treats celiac. One of the questions was had she had a bone density test done. She hadn't but mine done in 2000 showed osteopenia. I'm hoping he will see her. I'm interested in any info I can get from Mayo.

I have also been diagnosed with osteopenia and have, after a couple of years decided to take Boniva. I've been a dairy consumer and active all my life, but if you have malabsorption issues, (at a certain age, I suppose) it's a bit of a no-brainer. I applaud my employer for giving me the opportunity to check it out, initially, for free.

[Gemini]

chasbari, on Oct 8 2009, 07:03 PM, said:

Gee, not to be flippant but my treatment has been relatively simple. Never eat gluten again. In adhering strictly to this my health has returned, or should I say, reached a level that I never enjoyed in my entire life. I now chose to live this way and the physical benefits are beyond my comprehension. Is it hard to be in a gluten eating household in a gluten eating world with gluten filled ads and smells and all that? You bet. Does it ever get me down every once in a while? I would be lying if I said no. But, the benefits so outweigh the drawbacks that it is well worth the effort every single day. There is the cure. So many other diseases are so much more brutal to fight. Cancer, Diabetes, heart disease. It makes this one seem like a walk in the park. And, yes, I had many complicating factors and have dealt with cancer and RA and other autoimmune diseases so I am not making light of anyone who has difficulty dealing with this disease. After a lifetime of doctors it is a relief to actually know what I am dealing with and to also realize there is a way to deal with it.
CS

Well said and I couldn't agree more. There is a cure for Celiac Disease....healthy, gluten-free eatin'!

[nasalady]

gabby, on Oct 8 2009, 08:55 AM, said:

Just came across this interesting article linking bone loss and celiac disease and am posting the link:

http://news.bbc.co.u...lth/8295438.stm

Very interesting article, Gabby! I'm glad these researchers are digging into the detailed mechanisms of celiac disease to find out exactly how it manages to damage so many different systems in our bodies....thanks so much for posting it!

JoAnn

[nasalady]

Quote

My initial reaction was immediately "Another excuse to prescribe a drug for intervention." I am at odds with my rheumatologist about this issue at present as my bone scans showed loss enough to be of concern. He immediately wanted to put me on Boniva or Fosamax to which I declined. It took me decades to reach this point and I told him I was going to wait 24 months to see what happens to those numbers without pharmaceutical intervention. If there is no improvement then and only then will I consider drug therapy. I had a hard time walking back in November With proper gluten-free diet and exercise I am no longer experiencing any morning gel time and can run and exercise with heavy weights. I have found every time I get treated with drugs it masks symptoms that are trying to tell me something. I often wonder if I had obediently taken the DMARDS and NSAIDS if I would have survived long enough to finally get a correct DX of celiac as no one believes there is a link between my RA and my celiac. Since treating the celiac the RA and my other autoimmune problems are melting away. Just saying.

Gee, not to be flippant but my treatment has been relatively simple. Never eat gluten again. In adhering strictly to this my health has returned, or should I say, reached a level that I never enjoyed in my entire life. I now chose to live this way and the physical benefits are beyond my comprehension. Is it hard to be in a gluten eating household in a gluten eating world with gluten filled ads and smells and all that? You bet. Does it ever get me down every once in a while? I would be lying if I said no. But, the benefits so outweigh the drawbacks that it is well worth the effort every single day. There is the cure. So many other diseases are so much more brutal to fight. Cancer, Diabetes, heart disease. It makes this one seem like a walk in the park. And, yes, I had many complicating factors and have dealt with cancer and RA and other autoimmune diseases so I am not making light of anyone who has difficulty dealing with this disease. After a lifetime of doctors it is a relief to actually know what I am dealing with and to also realize there is a way to deal with it.
CS

From Oct 9 2009, 09:11 AM:

Well said and I couldn't agree more. There is a cure for Celiac Disease....healthy, gluten-free eatin'!

If it's been as simple as all that for you, you're lucky. I've been gluten free for 11 months now and I feel like I've been run over by a truck. I'm in a wheelchair and am still being diagnosed with new autoimmune diseases at a rate of one per every few months. I'm seriously considering going on disability.

I will never eat gluten again (and I've actually gone grain free recently), because eating gluten makes me feel even worse. But I'm not experiencing the magical cure that you apparently have. Don't knock medical research or the motives of those who participate in it....maybe they'll come up with something that will help me feel as good as you do!!

[Gemini]

nasalady, on Oct 15 2009, 12:06 AM, said:

If it's been as simple as all that for you, you're lucky. I've been gluten free for 11 months now and I feel like I've been run over by a truck. I'm in a wheelchair and am still being diagnosed with new autoimmune diseases at a rate of one per every few months. I'm seriously considering going on disability.

I will never eat gluten again (and I've actually gone grain free recently), because eating gluten makes me feel even worse. But I'm not experiencing the magical cure that you apparently have. Don't knock medical research or the motives of those who participate in it....maybe they'll come up with something that will help me feel as good as you do!!

I am sorry you have had such a hard time with everything and can empathize with you because I have 4 autoimmune diseases and the reality is lurking in the background that I could have more. I am not in a wheelchair so I would imagine that you have had a harder time than the vast majority of Celiacs. Your case is certainly atypical. Most do better on the gluten-free diet, which I still stand behind as a cure for Celiac Disease......as far as an option to taking medication which will only mask symptoms. I also know how much better I feel eating gluten-free but I still have to deal with the other autoimmune issues on a daily basis, like yourself. I don't feel wonderful every day but, compared to the state I was in at diagnosis, what symptoms I do have are a cake walk in comparison.

You also have not been gluten-free for very long and I will say from experience that it took me 3 years to come back into the normal realm....well, normal for me. You may do much better in future, no one can tell.

As far as knocking medical research, I am not sure where you picked that up in my post. The original poster had some excellent, valid points to make. There is no such thing as a magical cure and a pill which will create that. If a person chooses to take meds for a condition, that is fine but there are dangerous risks and side effects associated with most Rx drugs out there. You have to decide whether or not the risk is worth the benefit. At least with the diet, there are no side effects to worry about. You may also be experiencing what you are due to any meds you take, which may make it difficult for the diet to do it's job. I'm really sorry you are feeling this badly and hope, with time, the diet will improve things.

[nasalady]

Gemini, on Oct 15 2009, 10:30 AM, said:

I am sorry you have had such a hard time with everything and can empathize with you because I have 4 autoimmune diseases and the reality is lurking in the background that I could have more. I am not in a wheelchair so I would imagine that you have had a harder time than the vast majority of Celiacs. Your case is certainly atypical. Most do better on the gluten-free diet, which I still stand behind as a cure for Celiac Disease......as far as an option to taking medication which will only mask symptoms. I also know how much better I feel eating gluten-free but I still have to deal with the other autoimmune issues on a daily basis, like yourself. I don't feel wonderful every day but, compared to the state I was in at diagnosis, what symptoms I do have are a cake walk in comparison.

You also have not been gluten-free for very long and I will say from experience that it took me 3 years to come back into the normal realm....well, normal for me. You may do much better in future, no one can tell.

As far as knocking medical research, I am not sure where you picked that up in my post. The original poster had some excellent, valid points to make. There is no such thing as a magical cure and a pill which will create that. If a person chooses to take meds for a condition, that is fine but there are dangerous risks and side effects associated with most Rx drugs out there. You have to decide whether or not the risk is worth the benefit. At least with the diet, there are no side effects to worry about. You may also be experiencing what you are due to any meds you take, which may make it difficult for the diet to do it's job. I'm really sorry you are feeling this badly and hope, with time, the diet will improve things.

Gemini...sorry about that. You agreed with the previous poster who seemed to be saying that medical research is just about trying to make excuses to prescribe more and more medication to make money for the drug companies, so I lumped the two of you together in my response.

I was having a bad day yesterday.

Anyway, yes it's true that I haven't been gluten free that long. As I said before, the gluten free diet HAS helped me with many of my symptoms, especially the gastric issues. I no longer have to carry Imodium AD with me wherever I go!

As you know, I do have MANY other autoimmune diseases, and that complicates everything. Plus I'm on tons of medications, including powerful immunosuppressants with nasty side effects.

Well, I'm sticking with the gluten free diet no matter what, and my husband and I are currently grain free.....we'll see how that goes!

Thanks for your response!
JoAnn

[tarnalberry]

It's not necessarily as simple as "treat it with the gluten free diet". The point of the article is there is another antibody produced, not against gliadin, or the intestines, but against a bone building protein naturally in the body. It is not at all clear from the article if this 'new' antibody is produced only when a celiac consumes gluten, or if it is a 'secondary characteristic', if you will, of having the celiac genes.

Clearly, staying gluten free is vital for maintaining health, including bone density, for a celiac.

But I will be very interested to hear more about the research and the full ramifications.

[chasbari]

nasalady, on Oct 15 2009, 01:45 PM, said:

Gemini...sorry about that. You agreed with the previous poster who seemed to be saying that medical research is just about trying to make excuses to prescribe more and more medication to make money for the drug companies, so I lumped the two of you together in my response.

I was having a bad day yesterday.

Anyway, yes it's true that I haven't been gluten free that long. As I said before, the gluten free diet HAS helped me with many of my symptoms, especially the gastric issues. I no longer have to carry Imodium AD with me wherever I go!

As you know, I do have MANY other autoimmune diseases, and that complicates everything. Plus I'm on tons of medications, including powerful immunosuppressants with nasty side effects.

Well, I'm sticking with the gluten free diet no matter what, and my husband and I are currently grain free.....we'll see how that goes!

Thanks for your response!
JoAnn

I spent the first four and a half decades of my life getting progressively more ill and have been dealing with three autoimmune diseases. I could barely walk by this past December. I have found that every attempt by medical doctors was in the direction of masking or ameliorating symptoms at the expense of proper diagnosis. There are certainly worthwhile drugs for many diseases and I would not care to live in a world where scientific curiosity did not exist as to understanding the mechanics of disease and how to make it all better. I see you say that you went gluten-free and then finally went grain free. When damage is so severe that it causes other manifestations I am sure it takes time. I was fortunate to begin recovering very rapidly but I also chose to go with a strict strict adherence to a challenge diet based on a paleo diet as I found that trying to eat a "normal" appearing celiac diet of near replications of gluten foods was merely making me feel less bad at a very slow rate. At least I was no longer feeling worse. It was easy to forget how miserable I had actually been before I started even that phase of gluten-free living. When I went strict on the challenge diet the results were immediate and profound. I went from two hour gel times in the morning to zero gel times and I wasn't stuck crawling to the bathroom first thing in the morning anymore when I forgot to leave my crutches by the bed. I have exasperated my rheumatologist because I have rejected the typical treatment of DMARDS and things like Methatrexate and NSAIDS. I have seen those drugs create a level of function and comfort for many RA sufferers but I had a gut feeling that they were very bad for me. The short courses of those medicines had caused me to begin to lose vocal function and my hearing. Seeing that I sing opera and teach voice these were not viable alternatives. Yet, my doctor failed to understand why this was upsetting to me. I knew I had to get to the root cause of my disease process and very fortunately my wife was the one who began to connect the dots in November of this past year. Funny, we both studied clinical nutrition in college so when the suggestion was made it suddenly made all the ducks line up in a row. Proper treatment through diet has made my other autoimmune problems lessen to the point where, after nearly 15 years of not being able to shed a tear because of Sjogren's I have been welling up lately and I expect a tear to run down my cheek once again someday. I hope the first one is because of joy and not sadness as we have been experiencing much sadness here lately. My RA is no longer creating the need for any type of treatment and I can't wait to see what my numbers are on bone density when eligible for a follow up scan. The thing is, I realize that the courses of medicine my rheumatologist was suggesting would have been disastrous for me. He refused to even believe I had celiac even though the biopsy was very conclusive and the dietary response overwhelming. So, you see, I suppose I have a problem with the willful misapplication of medicine, not medicine itself. I chose to think of medicine as the avenue of last resort and my experiences have been that it is used before all the information is not only in but also understood. I am not some nut case who thinks all science and medicine is bad so please don't infer that.
CS

[Gemini]

nasalady, on Oct 15 2009, 01:45 PM, said:

Gemini...sorry about that. You agreed with the previous poster who seemed to be saying that medical research is just about trying to make excuses to prescribe more and more medication to make money for the drug companies, so I lumped the two of you together in my response.

I was having a bad day yesterday.

Anyway, yes it's true that I haven't been gluten free that long. As I said before, the gluten free diet HAS helped me with many of my symptoms, especially the gastric issues. I no longer have to carry Imodium AD with me wherever I go!

As you know, I do have MANY other autoimmune diseases, and that complicates everything. Plus I'm on tons of medications, including powerful immunosuppressants with nasty side effects.

Well, I'm sticking with the gluten free diet no matter what, and my husband and I are currently grain free.....we'll see how that goes!

Thanks for your response!
JoAnn

Oh...I wasn't mad or anything, JoAnn! I do feel the diet should come first as a treatment plan but sometimes, meds are needed. I feel really bad because in some ways, I do know what you are going through. With a high ANA and RF factor myself, I have been avoiding a trip to the Rheumy. It's weird, I have no symptoms of lupus or rheumatoid arthritis at all so what the hell do those results really mean? Does it mean I will trigger for them, down the road? That is scary enough so I can imagine what you must be going through. I think the diet can do wonders for many and I am really hoping you notice some remission from your problems soon. However, if I was suffering really bad with pain or was told I had to take a medication or I could die, then I would be taking meds, no doubt about that.

What I want is for a complete cure to be found for autoimmune diseases that cannot be cured or sent into remission with the gluten-free diet. Pills, maybe, without side effects. I think that's what most folks have trouble with....the side effects. Is it really too much to ask?

Anyway, I have had bad days myself but they weren't quite as bad as what you go through. It can be very overwhelming but you can always come on this forum and have a rant fest, if you want. If no one else does, we all understand your pain! You know, everyone fears cancer but autoimmune problems are no picnic, either. I am still learning all that CAN happen with them and sometimes, the knowledge is too much. I have my days where I just don't want to hear it.

I hope you don't have to go on disability because you have this great job, which must be so interesting. I work in a related field myself and working keeps your mind off the problems, sometimes. Keeps you focused. I just hope you have much better days ahead!