Healthy Person Disease

[Psyborg]

I've noticed over time that Wegs seems to affect "healthier" people most often. By this I mean it's the physically active people that seem to be affected. I've seen this noted on a lot of peoples posts about their Wegs story.

It got me thinking. I came from a unhealthy background, but due to a gastric bypass was actually in the best shape I'd been in for a LONG time. Was able to run, go to the gym, etc.

When I had my aborted TS dilation the anethetist said "that probably saved your life with the Wegs." At first I kind of chalked that up to ignorance of the fact that most people with wegs seem to come from a pretty healthy background.

Last night I was laying in bed and started wondering. Maybe the bypass did save me. I was thinking of the bias that all overweight people face, especially obese people. EVERYTHING is attributed to your weight. I'm willing to bet had I not been thin when this struck that it would have taken a very long time to get a diagnosis.

I mean the joint pain would have been chalked up as weight being too much for the joints. Any number of the affects could be attributed to "failures" caused by weight.

Basically I was thinking that a lot of people that have this could slip right through the cracks for diagnosis potentially.

I dunno...just wondered what others thought.

[Sangye]

It's probably true, Bob. I know even with this weight gain from pred I have doctors attribute things to the weight that are just ridiculous (though some things are definitely connected to it). And there isn't much sympathy from many of them when I explain how difficult it is to lose weight now. Even though I should know better by now, I still expect them to get it. I really need to give up that expectation. Like all expectations, it only leads to suffering.

[Psyborg]

I honestly spent a long time in denial about my weight, to the point that I wouldn't go to the doctor unless I was extremely sick. I hated the accusations and the referrals to dietitians. Not that parts of it weren't correct, but in large part because it was remarkably brutal at times. It's like fat people are the one group that people can discriminate against without any sort of risk.

I certainly had made my own bed, but I also now something was wrong with me at one point as I had run away weight gain for about a year. Further gains later just made it worse. But of course everyone wants to assume that you eat 3 big macs every meal or something :) I never was a big eater, I really underestimated the damage I was doing to myself drinking soda.

[NicShaf]

You bring up a very interesting point, Bob. I have noticed this also, even in my own diagnosis story. I was very healthy right before I was diagnosed, I ran a couple miles a day, ate overall healthy things. And that is why I kept pushing my doctors to figure something out, I was too young and healthy to be sick for as long as I was, it wasn't normal. But, I see where if someone was heavier, all those "signs" could be attributed to other things, because most of the signs of Wegs are so general.
I have also put a lot of thought into this, and I have wondered if my physical exertion pushed my body over the edge and caused Wegs. It's that nagging feeling that I know we all get...what happened, where did I go wrong, why did this happen to me? I felt like I was coming down with a cold, but had signed up for a greuling 10K race and attempted it despite feeling a bit under the weather. I barely got through half the race, and the track workers were asking me if I was ok...I'm assuming I looked pale or something as I walked back to the finish line. Sometimes I wonder if that was the straw that broke the camels back? I know there is no point in trying to figure this out, but it is soemthing that crosses my mind every once in a while.

[watersedge]

I think you are on to something here Psyborg. Myself and my mother have talked about this numerous times. My dad was very healthy, porridge for breakfast, a couple of pieces of fruit per day, healthy dinners and very rarely ate anything sweet, drank plenty of water and never weighed above 10.5 stone in his life. He also took cod liver oil, flaxseed, manuka honey, herbal teas and all kinds of things. The one thing I do remember is that the doctors were very interested in what type of things he took and had us write down a list, they seemed to think it relevant to his condition. My mam has herself convinced that he was too careful with what he ate along with taking different supplements. She thinks his immune system was probably too high and in turn started to attack his body, who knows, maybe she is right!

[NicShaf]

Just feeding this theory, being conscientious about our health is something that my dad and I share in our personalities...and we both have auto-immune diseases...interesting, I think.

[Barry]

I think we would need to differenciate between healthy people getting WG and only healthy people being diagnosed with WG. The doctors do tend to find every every other reason first. So for example if you smoke they tend to stop looking farther.

[elephant]

The question is how many people on this forum didn't exercise? I was a runner before a was diagnosed with an autoimmune disease.

[Sangye]

. My mam has herself convinced that he was too careful with what he ate along with taking different supplements. She thinks his immune system was probably too high and in turn started to attack his body, who knows, maybe she is right!
For what it's worth, that can't happen. Autoimmune diseases occur when the immune system is dysregulated--meaning it can't regulate itself. It becomes overactive and underactive in an attempt to find balance. So the root question is: What dysregulated the immune system in the first place? There are a gazillion possible answers to that. Some of the more common are stress, toxins and chronic infections.

[Sangye]

The question is how many people on this forum didn't exercise? I was a runner before a was diagnosed with an autoimmune disease.
I was in great shape-- hiked 5-10 miles a day in the mountains, came home to do 1 hr of yoga, then worked all day as a chiropractor. I ate nearly all organic.

[Psyborg]

The question is how many people on this forum didn't exercise? I was a runner before a was diagnosed with an autoimmune disease.

A year before, I was pretty darn sedentary, but when I got sick I'd just gotten back into reasonably good condition. Not perfect by any means, but was at the gym regularly.

[marta]

I have been busy and not been able to peek on here, but as I was about to shut my computer down I noticed this thread and have to put my two cents in.

It was this exact topic that kept me up one of the nights I was in the hospital with my flare last October and inspired me to put the survey together. I had heard a story on the news about how being fit and active boosts your immune system, and this was still when I thought that our particular problem is due to an 'overactive' immune system rather than just a confused one. This is when I put the survey together, and indeed if you look at the results, we are mostly an active, fit bunch of people before getting that slap from the universe. Here's the results on that particular question....

4. Physical State before you got sick answered question 385 skipped question 5

CountHow would you rate your overall physical fitness before diagnosis?

Pro Athlete 0.5% (2)
Very Very Active 15.1% (58)
Above Average activity level 30.9% (119)
Average 37.9% (146)
Too busy to exercise 9.4% (36)
More down than up time 6.2% (24)

Cool, hey?

[delorisdoe]

hmmm...I dont think so.

[Rini]

well if even 1/2 the time our immune systemis overactive it would be harder for us to get sick ya? i keep thinking of that 90's song "don't let me get me"

[mishb]

I'm sorry, I was in the 'too busy to exercise' percentage.
I tried to eat healthy but didn't exercise or ride a bike, run or do hikes .... I just worked, 10-12 hour days then came home and vegetated in front of the telly.
I do have a vibrating platform machine that I stood on everyday. Have you heard of one of these? It jiggles every party of your body and you are
supposed to tone up, lose weight etc. My joints seemed to just get worse and worse and therefore I quit using it.
Mine however, was definately from stress and infection but prior to this I was never sick and my immunologist said that this is the reason why my immune
system went haywire, because I was never sick and it wanted something to do ... didn't like sitting idle for so many years, so decided to make it own fun (so to speak)

[freakyschizogirl]

I will hold my hand up and say i have never been very active or health conscious. I've been overweight all my llife and i'm only 26! I put this down to environmental and nurturing, we come from a famiyl of "bigger" people and my nan had no concept of portion sizes! In fact my sister who is very picky about her food and hardly touches a fruit or vegetable but does consume vast amounts of chocolate is the most healthy outta my family of 3. My mum has RA and me WG. So i guess that makes me the exception?

[BrianR]

Hi all. My humble opinion is that being fit, exercising and eating healthy is not going to "give you" WG or make you more susceptible to it. Healthy and unhealthy people alike can be stricken with any number and sorts of diseases and ailments. Overtraining can make you weaker and more susceptible to catching bugs and... if you are worn down from overtraining it takes longer to beat a cold (for example) but as far as being more susceptible to acquiring an IA disease, I can't see it.

What I do see though is that training and eating healthy cannot prevent one from acquiring WG. I just think it happens to very, very, special people!

[Sangye]

Marta's survey reflects what Dr Seo told me at my first appt-- that most Weggies were "very healthy" before getting sick. He went on to describe that this meant most were active and they didn't have any diagnosed conditions like diabetes or heart disease. The medical perspective is that you are either healthy or you have a disease. From a holistic perspective, health is a spectrum with "optimal health" at one end and "death" at the other. We look at where a person is located on the spectrum and in which direction they're moving (and how fast). We also say that the absence of disease does not necessarily indicate health. If someone's blood sugar is slowly increasing but is still within normal range, medical doctors call that "healthy." Holistic doctors call it diabetes in the making and act to reverse it.

In my case, I was very fit, active, ate great, had (way) above average bone density, excellent blood sugar, perfect labs, etc.... YET I was under chronic stress and I'd also had a lot of exposure to toxins throughout life and for 2 years before being dx'ed. So while there were no measurable indications of declining health, my body was setting up for an autoimmune disease for a long time. Like that old commercial, you can't fool Mother Nature.

Maybe this helps others understand how they could be "healthy" and still get Wegs.

[vdub]

I was in great shape when I got WG. But I'm not sure I ate all that healthy. I grew up on a farm and we grew up as avid carnivors. I still crave meat over anything else. I could never be a vegetarian....

[Sangye]

vdub, There is nothing unhealthy about meat. Our human ancestors ate it along with every part of the animal for millenia, until processed foods began to appear in the 1940's. We've gotten into trouble with our diets by too much of certain types of meat, grain, and processed food, and undereating organs, vegetables and real foods. If you look at the traditional diets of people around the world they don't look anything like the modern diet.

[Barry]

I guess my point is most doctors would not test for WG unless they have run out of every other option. How many older or less healthy people that have WG are never diagnosed because there symptoms are pushed off yo other "issues".

[vdub]

That's a very valid point.... My mother-in-law died of CREST (http://en.wikipedia.org/wiki/CREST_syndrome).... She was a little over 80, so once they dx'ed her with CREST, they probably figured they didn't have to look any further.

[delorisdoe]

wegners was one of the first things my doctor tested for...he just did not think that the anca was high enough for that to be the diagnosis at the time.

[drz]

I guess my point is most doctors would not test for WG unless they have run out of every other option. How many older or less healthy people that have WG are never diagnosed because there symptoms are pushed off yo other "issues".

I think most of my symptoms were passed off as due to other things but most of these possibilities were ruled out by the specialists I saw for evaluation, such as arthritis, spinal stenosis, further neuropathy, sinus infections, further kidney failure etc. i did have three or four decades of diabetes and some of these complications from the diabetes were made worse by the GPA but were generally viewed as further complications of my diabetes rather than a new disorder. It wasn't until my "pneumonia" turned into coughing up blood that they started to look for any thing new.

[Psyborg]

I'll never know if they'd have treated me differently, but who knows. My mind goes off on weird tangents periodically. :)

[drz]

That's a very valid point.... My mother-in-law died of CREST (http://en.wikipedia.org/wiki/CREST_syndrome).... She was a little over 80, so once they dx'ed her with CREST, they probably figured they didn't have to look any further.

Is that also a rather rare auto immune disorder?

Does any one else in the family have an auto immune disorder?

[Rose]

Yes. my sister was diagnosed with RA in her mid thirties. I also have a sister who developed Pulmonary Arterial Hypertension (also a very rare disease) in her mid sixties and died of it a few years later. Although PAH is not AI I asked my rheumatologist if WG could be connected. She said it could as they both involve connective tissue. As I also had never heard of CREST I researched it and discovered that it is an inflammatory rheumatic disease and a type of Scleroderma. It is a connective tissue disease and if the lungs are involved it is usually in the form of PAH. Interesting!

[Sangye]

This question comes up a lot on here! Nothing in my family at all.

At my last visit I asked Dr Seo about all this. I posted his response in another thread but here's what I wrote: "There is zero evidence that Wegs is genetic. There is also no evidence that Wegs is more likely to occur if there is a family history of AI diseases. Wegs occurs in AI-afflicted families at the same rate as in non AI-afflicted families."

[MCC]

I was very healthy before the WG too...which is why is was such a shock that it came on so fast.

[Sangye]

Yeah, at my first appt with him Dr Seo said that's why it's so much more difficult to be dx'ed with Wegs for the majority of people. He said "You're not used to being sick." Very true in my case. Wish it came with an instruction manual. LOL

[Rini]

With the family thing i have to point out how hard it is for this to get identified and the part about nobody knowing what kicks it into swing... I have read SO many ways this affects people. what if it skips a generation and then the next dose not kick in or kicks in late and goes undiagnosed? go back a few generations and nobody has even herd of it. Is it more common in one gender versus the other? I would not push this so much but my grandmother, mom AND sister have AI's and it is not like we grew up in the same place r even eat the same kinds of foods. an AI gene that is recessive and looks different every time it shows up would be kinda hard to track.

[delorisdoe]

I am on the fence about all of this. I am not a doctor and I do believe I probably know less about wegners than most of the people on this site. What I do know is that my fathers side of the family has zero people with autoimmune dissorders and my mothers side is littered with them. What I also know is what we "know" about wegners changes all of the time. I was diagnosed 10 years ago and ten years ago I was given the standard treatment for active wegners. If I were to recieve that treatment now you would all accuse my doctor of malpractice and urge-force-me to leave him. I do not believe that even Dr seo knows everything about wegners and that he and other doctors may be wrong about the genetic link of autoimmune disorders. I hope he and others are right-I have a daughter and do not want her to end up like many of my family members. Ten years ago I trusted my doctors were right and treated me properly for wegners but I know now as do they that they may have done great dammage to me with the treatment they chose and that they would not go down that road-which was the proper road ten years ago-again with me or anyone else.

[Psyborg]

It seems like a lot of the doctors are very concerned with how to treat the disease, and less concerned with what causes it in the first place. I would love to know what causes it in case it could help others prevent getting it. I think it's a case of doing the best they can with what they know, and it is improving rapidly, but it doesn't seem so for those of us struggling through this.

The thing with Autoimmune disorders is that while there are fewer confirmed as autoimmune diseases, there are many diseases that they feel may be autoimmune. There was even speculation that cancer is autoimmune. Kind of weird in my opinion. I kind of like to limit my reading to vasculitis only for that reason...its just hard to become familiar with AI disease in comparison. Though I could be completely wrong there.

[Sangye]

The number of people with AI diseases has increased very dramatically since the 1940's. Same with cancer and heart disease. Holistic docs believe that is due to our change in diet and use of chemicals.

Leigh, to be sure-- Dr Seo would never claim to know everything about Wegs. But he (like the other Wegs specialists) really knows the research that's out there. I can read a paper here and there and still have none of the knowledge base he has. He always emphasizes this is what we know now and that things change with further research. That's science!

Meanwhile, your AI-laden family and my AI-free family cancel each other out statistically. When we've asked this question before, we've always found that to be true, even with our small sample size.

[MCC]

It seems like a lot of the doctors are very concerned with how to treat the disease, and less concerned with what causes it in the first place. I would love to know what causes it in case it could help others prevent getting it. I think it's a case of doing the best they can with what they know, and it is improving rapidly, but it doesn't seem so for those of us struggling through this.

The thing with Autoimmune disorders is that while there are fewer confirmed as autoimmune diseases, there are many diseases that they feel may be autoimmune. There was even speculation that cancer is autoimmune. Kind of weird in my opinion. I kind of like to limit my reading to vasculitis only for that reason...its just hard to become familiar with AI disease in comparison. Though I could be completely wrong there.

I agree!

I also agree with Sangye re) holistic doctors thinking it is due to diet and chemicals.

Clearly I'm no expert but how toxic our lifestyles are nowadays is scary. I am trying to reduce the chemicals I use - for example I use the oil cleansing method to wash my face: The Oil Cleansing Method - A simple, cleansing facial massage for clear skin! (http://www.theoilcleansingmethod.com/) instead of face wash, moisturiser etc. I also use some mineral make up now and TRY to buy natural washing powder, washing up liquid etc. It is very difficult though, we're surrounded by toxcicity. Even if proven wrong, it surely can't do harm to reduce these things I figure anyway :)

We are also too reliant on processed foods (I include myself in this completely!) Food Matters talks about how our diet affects our health and encourages eating wholefoods: Welcome | FOODMATTERS (http://www.foodmatters.tv/)

[delorisdoe]

The number of people with AI diseases has increased very dramatically since the 1940's. Same with cancer and heart disease. Holistic docs believe that is due to our change in diet and use of chemicals.

Leigh, to be sure-- Dr Seo would never claim to know everything about Wegs. But he (like the other Wegs specialists) really knows the research that's out there. I can read a paper here and there and still have none of the knowledge base he has. He always emphasizes this is what we know now and that things change with further research. That's science!

Meanwhile, your AI-laden family and my AI-free family cancel each other out statistically. When we've asked this question before, we've always found that to be true, even with our small sample size.

I have always just believed my doctors and I believe doctors I have not met as well. So much to the point that I dont even ask questions and can even pinpoint errors made in my health as recent as 3 months ago that I just go along with. I only used Dr Seo in my response as he is the name I am most familiar with on this site I hope I did not offend you as clearly he knows his stuff. Statistics never impress me. Only time will tell. Of course I believe that our diets etc have something to do with all of this. I am just saying that we will see in ten years what the "wegners specialists" know. I am convinced of nothing if not that what we now know will be different from what we will know in the future.

[Rose]

I come from a large family and my other siblings whose ages range from mid fifties to mid seventies have all enjoyed good health all their lives. as my other 2 sisters and myself did until struck by these illnessess in middle age. I am not aware of any AI diseases in my extended family. Sometimes I wonder if we were exposed to something in our youth but then why just us 3 and not the others. Maybe there is a fuse waiting to be lit and that fuse was placed there by exposore to chemicals. infections, vaccines or genetic and STRESS is the match which lights the fuse. Certainly this is what happened to me. I had been suffering from unrelenting stress for about 18 months when i came down with a bad infection. That is when I said goodbye to my robust good health and hello to my chronic ill health. In retrospect, I should have handled the stress even although I just had a baby, was living in a country which was on the verge of civil war with no family and few friends (most had fled) around for support. Yes, stress is a big culprit in the cause of disease and illness and as children are taught about cleanliness etc to prevent the spread of diseases they should be taught how to recognize stress, the effects of stress on the body and techniques on how to handle stress which would also help in the prevention of many diseases. Talking about children.....this does not answer the question as to why young children (not exposed to stress) get AI diseases. Yes, it is a puzzle!

[malin]

The number of people with AI diseases has increased very dramatically since the 1940's. Same with cancer and heart disease. Holistic docs believe that is due to our change in diet and use of chemicals.

I don't really disagree with this, it's seems very possible that this is true but whenever a statement like that pops up somewhere (like news etc...) I can't help but think "Well, yes, but pretty much ALL diseases are on the up since 1800-1900 whaterver century, because we have much better ways of detecting illnesses now than what they had back then?" I mean, isn't the awareness etc about diseases are much much bigger now than it has ever been before? Along with increased screenings and all that?

[Sangye]

Malin, that's only true for a small handful of illnesses. Cancer has always been diagnosed--even if only post-mortem--but it was rare in the world. Type 2 diabetes was not common until about 25 yrs ago, even though we've been able to diagnose it for a very long time. Many AI diseases are easy to spot-- (eg, scleroderma, RA) and yet they are on the rise.

Much work was done in the 1930's in the area of studying indigenous people, their diets and the incidence of diseases. Their skeletal remains were also studied. There was very little incidence of diseases like we have now. Hence the term "diseases of modern living."