As a newly self diagnosed (by diet response only) celiac, I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc.
I have been eating tons of gluten for every day for years and living with the consequences (moderate symptoms, primarily loose bowels and low grade malabsorption). I find that that all magically goes away with simple avoidance of gluten containing foods.
However, I assume some others have much more severe reactions, thus the strict avoidance and worry for cross contamination, etc.
Are there others like me, with very troubling, but less serious reactions, that don't have to worry quite as much? An example would be, say, Kellogs Corn Flakes or Rice Crispies. These are flavored with a small amount of malt flavoring (made from barley). I've been eating those and so far I don't think they bother me.
Or am I just risking trouble?
The way I see it the only real trouble is the concern for maligancy due to long term inflammation in the small intestine (I happen to be a cancer doctor). A little malabsorption now and then won't lead to serious nutritional deficiencies or osteoporosis (if very occasional, I'm not suggesting to constantly eat small amounts, just not to worry about tiny amounts or a rare slip up). And as far as intenstinal lymphoma caused by untreated celiac, well I have only seen a handful (less than 5) cases of intestinal lymphoma in 15 years of practice treating only cancer. And I doubt all of these patients had celiac as a cause. So I would say this is a very rare complication, given that there are thousands and thousands of undiagnosed celiacs walking around untreated.
Sorry for the ramble but I've been wrestling with these issues. So how about it, any others who have milder forms of celiac? What do you do?
Full Version: How Strict Do We Need To Be?
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As you are a cancer doctor, let me ask you this.. how often a day should I smoke? Surely if I do not cough, I am okay right? And if I get the smokers cough, that just means cut back a little, right?
I think you can see where my example leads.
I aviod high risk of CC, and all known gluten sources, but I accept a certin level of CC risk as just the reality of life with celiac disease. If I am ever burned by a place or item I simple aviod that item/place in the future.
I think you can see where my example leads.
I aviod high risk of CC, and all known gluten sources, but I accept a certin level of CC risk as just the reality of life with celiac disease. If I am ever burned by a place or item I simple aviod that item/place in the future.
from what I've been told, Celiac is Celiac is Celiac. There is no milder forms... some people are just asymptomatic or have fewer symptoms than others. The damage is still being done on the inside and we've been told to adopt a "zero tolerance" policy of no gluten allowed.
Many people have discovered that the longer they are off of gluten the more severe their reactions become.
Granted, I ate gluten for 33 years before my dx... one would think that a little would be ok, but it's not. I've been gluten free now for 3 years and if I am exposed to even a molecule of gluten due to a crumb of cross contamination, then I am thrown into a tailspin of symptoms for weeks.
Some people choose to cheat on the gluten-free diet, but we have all been advised that that is not wise at all and a little gluten is like not being gluten free at all, every time you are exposed you are setting your recovery back that much further, and increasing those risk factors for other health issues like the malignancies that you spoke about.
I hope that you decide that cheating is not worth it... A little gluten is just as bad as a lot of gluten. It only takes a molecule to do damage.
Look at it this way, Gluten is poison. Like Arsenic, would you say oh that just a little arsenic in your cereal is ok? Or just a little Arsenic today, and I'll go back to being Arsenic free tomorrow? It doesn't work that way! LOL! I know that's kind of an extreme way of looking at it, but that is how I keep myself from ever being tempted to cheat.
Sure we all have accidental glutenings from time to time, but the goal is to be 100% gluten free all the time, and for many of us, the symptoms prior to our dx were so terrible, and we were so close to death, that we don't EVER want to experience that feeling again. At least not willingly.
Many people have discovered that the longer they are off of gluten the more severe their reactions become.
Granted, I ate gluten for 33 years before my dx... one would think that a little would be ok, but it's not. I've been gluten free now for 3 years and if I am exposed to even a molecule of gluten due to a crumb of cross contamination, then I am thrown into a tailspin of symptoms for weeks.
Some people choose to cheat on the gluten-free diet, but we have all been advised that that is not wise at all and a little gluten is like not being gluten free at all, every time you are exposed you are setting your recovery back that much further, and increasing those risk factors for other health issues like the malignancies that you spoke about.
I hope that you decide that cheating is not worth it... A little gluten is just as bad as a lot of gluten. It only takes a molecule to do damage.
Look at it this way, Gluten is poison. Like Arsenic, would you say oh that just a little arsenic in your cereal is ok? Or just a little Arsenic today, and I'll go back to being Arsenic free tomorrow? It doesn't work that way! LOL! I know that's kind of an extreme way of looking at it, but that is how I keep myself from ever being tempted to cheat.
Sure we all have accidental glutenings from time to time, but the goal is to be 100% gluten free all the time, and for many of us, the symptoms prior to our dx were so terrible, and we were so close to death, that we don't EVER want to experience that feeling again. At least not willingly.
Well, here's the interesting thing about that, Dr. Fine's stool tests finds antibodies to gluten in the intestines long, long after you've last consumed it. So what sort of long term damage does having an immune response going off periodically do to your body? Since gluten sensitivity is linked to a lot of autoimmune diseases... (I have a couple of them (Graves and ankylosing spondylitis) I'm assuming the link is the bad stuff happening in the gut. My Rhuemy told me that most of his AS patients are also celiacs.
You might want to read some of the studies from The Gluten File. Lots of links to research regarding gluten sensitivity that is probably right up your alley.
Oh yes, there's a doctor in Maryland, Dr. Fasano. Something similar to that, who has made some interesting discoveries about a hormone called Zonulin causing intestinal permeability in the gluten sensitive.
You might want to read some of the studies from The Gluten File. Lots of links to research regarding gluten sensitivity that is probably right up your alley.
Oh yes, there's a doctor in Maryland, Dr. Fasano. Something similar to that, who has made some interesting discoveries about a hormone called Zonulin causing intestinal permeability in the gluten sensitive.
QUOTE(radman @ Mar 26 2006, 02:54 PM) 
As a newly self diagnosed (by diet response only) celiac, I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc.
I have been eating tons of gluten for every day for years and living with the consequences (moderate symptoms, primarily loose bowels and low grade malabsorption). I find that that all magically goes away with simple avoidance of gluten containing foods.
However, I assume some others have much more severe reactions, thus the strict avoidance and worry for cross contamination, etc.
Are there others like me, with very troubling, but less serious reactions, that don't have to worry quite as much? An example would be, say, Kellogs Corn Flakes or Rice Crispies. These are flavored with a small amount of malt flavoring (made from barley). I've been eating those and so far I don't think they bother me.
Or am I just risking trouble?
The way I see it the only real trouble is the concern for maligancy due to long term inflammation in the small intestine (I happen to be a cancer doctor). A little malabsorption now and then won't lead to serious nutritional deficiencies or osteoporosis (if very occasional, I'm not suggesting to constantly eat small amounts, just not to worry about tiny amounts or a rare slip up). And as far as intenstinal lymphoma caused by untreated celiac, well I have only seen a handful (less than 5) cases of intestinal lymphoma in 15 years of practice treating only cancer. And I doubt all of these patients had celiac as a cause. So I would say this is a very rare complication, given that there are thousands and thousands of undiagnosed celiacs walking around untreated.
Sorry for the ramble but I've been wrestling with these issues. So how about it, any others who have milder forms of celiac? What do you do?
I have been eating tons of gluten for every day for years and living with the consequences (moderate symptoms, primarily loose bowels and low grade malabsorption). I find that that all magically goes away with simple avoidance of gluten containing foods.
However, I assume some others have much more severe reactions, thus the strict avoidance and worry for cross contamination, etc.
Are there others like me, with very troubling, but less serious reactions, that don't have to worry quite as much? An example would be, say, Kellogs Corn Flakes or Rice Crispies. These are flavored with a small amount of malt flavoring (made from barley). I've been eating those and so far I don't think they bother me.
Or am I just risking trouble?
The way I see it the only real trouble is the concern for maligancy due to long term inflammation in the small intestine (I happen to be a cancer doctor). A little malabsorption now and then won't lead to serious nutritional deficiencies or osteoporosis (if very occasional, I'm not suggesting to constantly eat small amounts, just not to worry about tiny amounts or a rare slip up). And as far as intenstinal lymphoma caused by untreated celiac, well I have only seen a handful (less than 5) cases of intestinal lymphoma in 15 years of practice treating only cancer. And I doubt all of these patients had celiac as a cause. So I would say this is a very rare complication, given that there are thousands and thousands of undiagnosed celiacs walking around untreated.
Sorry for the ramble but I've been wrestling with these issues. So how about it, any others who have milder forms of celiac? What do you do?
I don't know a better way to do this except being blunt. I don't mean to be rude but shuffling around the issue will just confuse you more.
If you search these forums you will see plenty of references to 'brainfog' (just do a search). The problem is this is very much something you discover after you have been 100% gluten-free for a while (the time depends on the person, thier age and how long they have been gluten-free). This is a matter of faith because neither myself nor others will convince you that you feel normal, really noone would have convinced me either. The best way I can say it is its like an alchoholic who wakes up every morning and doesn't know what it is like for everyone else. celiac disease progresses slowly and many people put many things down to just getting older .. working too long hours or 1001 other causes. I honestly think you cannot see this (and I hink others will support this view) until you come out of the other side. Its perhaps like someone who has very slowly needed glasses starting to get headaches but continuing because they can see OK, then one day they get their eyes tested and a pair of glasses and suddenly they realise how much their eyesight deteriorated and the small print suddenly looks crisper and the sign board it the distance easier to read.
You may perhaps not be affected but my experience is those who do a 100% gluten-free diet for 3 months nearly all find they suddenly feel better and ailments they had just thought were part and parcel of life have dissapeared. A common one is allergies to other things, my hay fever dissapears almost completely if I'm 100% gluten-free and my allergy to lavender dissapears to a mild irritation.
There is plenty of good research showing neuroligical problems associated with coeliacs eating gluten.
There are links to diabetes and thyroid problems and also lesions in the brain ... In the end the intestinal reaction is just one of many. I and many celaics I know have found their intollerance is at different levels. If I eat very low amounts of gluten I might not have any intestinal reaction however the brain foig appears, I get snappy and my allergies return. A little more and I start getting migranes again... something going from being disabled in bed for 2-3 days a month to NEVER when Im 100% gluten-free.
The problem is you might not get migranes or hay fever but you might have other symptoms because the gluten messes with your immune system .. the effects vary person to person so me saying do you feel XXX is not helpful.
QUOTE
I happen to be a cancer doctor
Then you may wish to read some of the medical works on peripheral conditions.
I feel a little like teaching my grandmother to suck eggs ... but you know well Dr's make the worst patients!
Please at least look at these
http://brain.hastypastry.net/forums/showthread.php?t=2132
specifically
http://jnnp.bmjjournals.com/cgi/content/full/72/5/560 and other works of M Hadjivassiliou.
I have two reasons for this...
1) A genuine concern for your health
2) You are a very valuable resource..... ahem we need MD's to start recognising these conditions.
Just search brainfog on this forum or ANY celaic forum... its consistent, the descriptions are the same but the medical community on the whole dismisses it.
Many celaics have been referred to psychiatrists prior to diagnosis and even afterwards we struggle to get recognition of documented complications. Indeed the 'charity' purporting to represent celaics in the UK recently wrote an article dismissing depression in celaics as "we are just upset we don't have the same food choices"
Pleae at least take the time to review some of the articles in the link, it is possible some of the people read the symptoms and try hard to find them in themselves and even perhaps that some suffer Munchausen syndrome but the overall weight of evidence tends to add credibility to our claims.
In summary, you won't know unless you try.
Thanks folks, and I do respect your wisdom of experience.
However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.
Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.
I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.
Let's think about the medical problems associated with untreated or poorly treated:
Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.
Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.
Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...
Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.
These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.
This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.
By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.
However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.
Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.
I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.
Let's think about the medical problems associated with untreated or poorly treated:
Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.
Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.
Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...
Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.
These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.
This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.
By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.
Cheating just isn't an option. My gut problems were fairly mild compared to a lot of other people here. My symptoms were obesity, chronic fatigue and crippling brain fog that nearly destroyed everything in my life. It took 36 years for my symptoms to reach that point. The problems were always there but they got progessively worse as I got older. When I get glutened I bloat up like a balloon, gain weight and can't think worth a damn. We need you, a doctor, to fully understand just how serious this is. Cheating is just not an option no matter how good you feel right now.
Oh, I almost forgot.
The comment about having increased reactions to gluten the longer one has been gluten free is very interesting. I haven't heard this before, but it makes sense, unfortunately. This could change things, obviously. If severe reactions develop from tiny exposures then the whole point is moot, and strict strict avoidance is the only answer.
I guess I'll will find out as time goes by.
The comment about having increased reactions to gluten the longer one has been gluten free is very interesting. I haven't heard this before, but it makes sense, unfortunately. This could change things, obviously. If severe reactions develop from tiny exposures then the whole point is moot, and strict strict avoidance is the only answer.
I guess I'll will find out as time goes by.
I'm struggling with how to say this without sounding mean...
I absolutely disagree with you about not thinking that a celiac is a celiac is a celiac... The biggest problem with the misunderstanding of this disease is that the medical community is still so hung up on the classic presentation of Celiac. That classic presentation is an extreme form of the disease for sure, but there are over 200 symptoms related to Celiac and Gluten Intolerance that are currently being dismissed and or ignored completely by the majority of the medical community. The non classical presentations of this disease are just as dangerous and insidious as the classic presentation. And it is attitudes like yours that perpetuate this misconception that this is all in our heads.
I know you are new to this and I really don't wish this on anyone, but you absolutely have to understand that cheating is not an option and you must adopt a zero tolerance policy.
I absolutely disagree with you about not thinking that a celiac is a celiac is a celiac... The biggest problem with the misunderstanding of this disease is that the medical community is still so hung up on the classic presentation of Celiac. That classic presentation is an extreme form of the disease for sure, but there are over 200 symptoms related to Celiac and Gluten Intolerance that are currently being dismissed and or ignored completely by the majority of the medical community. The non classical presentations of this disease are just as dangerous and insidious as the classic presentation. And it is attitudes like yours that perpetuate this misconception that this is all in our heads.
I know you are new to this and I really don't wish this on anyone, but you absolutely have to understand that cheating is not an option and you must adopt a zero tolerance policy.
You say you are eating corn flakes and/or rice krispies every day, with a teeny bit of malt flavoring in them. Well, then, you never really went glutenfree, did you? As long as you never >really< go gluten-free, you will never >really< see how it impacted your health. Yes, most of the time damage to the intestines will reverse itself, but you have to be completely gluten-free for that to happen. Have you had an endoscopy done, with biopsies of your intestinal wall? Are you absolutely certain that you have not done a lot of damage with your cheating? I have been gluten-free for a little over 3 years, and when I got contaminated last week, I had all of the classic symptoms of celiac. That was very odd to me, since I never had the classic symptoms to begin with. The longer you are completely gluten-free, I think the worse your symptoms are. Perhaps your body is so accustomed to being glutened that you are just not recognizing it. Try being completely gluten-free for 3 months, then eat a half slice of bread. That is the true test in the dietary fashion. You will have to stop cheating even a teeny bit for this test to work, though. No scientist worthy of his calling would accept any less.
[quote name='radman' date='Mar 26 2006, 09:06 AM' post='118951
I guess I'll will find out as time goes by.
[/quote]
I really hate the thought of you treating yourself as a guinea pig. I think you are still in denial about some of the aspects of celiac. I am in the minority of typical sufferers in that I was dx'd early into the disease (suffered a whole six weeks) At first I didn't understand what gluten did to me, but after awhile I realized I much preferred to be as healthy as possible and avoided gluten, even cross contamination, like the plague.
Except for malt. It didn't seem to bother me, so I ate rice and corn cereal flavored with malt and since I couldn't drink beer, drank malt based beverages. After 9 years of being "gluten free" I joined this forum and realized what I was doing to my body. I had developed neurapathy - when I got out of bed in the morning I felt like I was walking on stumps. My face and lips were numb. The brain fog was getting so that when I went to work one morning, I couldn't remember how to run a program on my software that I had used for 5 years! And constipation to the max. So I finally cleaned up my diet for real last November. I have way more energy and am actually able to multi-task at times!!! So PLEASE, listen to us experienced laymen. We may seem overly cautious and paranoid regarding gluten, but we do have our reasons and experiences backing us up.
Annette
I guess I'll will find out as time goes by.
[/quote]
I really hate the thought of you treating yourself as a guinea pig. I think you are still in denial about some of the aspects of celiac. I am in the minority of typical sufferers in that I was dx'd early into the disease (suffered a whole six weeks) At first I didn't understand what gluten did to me, but after awhile I realized I much preferred to be as healthy as possible and avoided gluten, even cross contamination, like the plague.
Except for malt. It didn't seem to bother me, so I ate rice and corn cereal flavored with malt and since I couldn't drink beer, drank malt based beverages. After 9 years of being "gluten free" I joined this forum and realized what I was doing to my body. I had developed neurapathy - when I got out of bed in the morning I felt like I was walking on stumps. My face and lips were numb. The brain fog was getting so that when I went to work one morning, I couldn't remember how to run a program on my software that I had used for 5 years! And constipation to the max. So I finally cleaned up my diet for real last November. I have way more energy and am actually able to multi-task at times!!! So PLEASE, listen to us experienced laymen. We may seem overly cautious and paranoid regarding gluten, but we do have our reasons and experiences backing us up.
Annette
Hey folks,
thanks for the info, Thanks gfp for the extensive food for thought. You make a lot of important points. When I have the time I will definitely check out the links and try to become more educated. And Ian, gfp and others have made me think about brain fog. Hey, finally a little something positive. Maybe I'll be smarter and clearer thinking without the gluten (rather than just less flatulant ), that would be nice!
Let's all try to keep an open mind and be supportive to each other while we try to deal. I certainly don't have an "attitude" at all about celiac presentations or severity of ancillary problems. I am just trying to form an educated opinion for my imperfect self. Again there are clearly differences from patient to patient, and the "classical" form does exist. That is not an attitude, just a lack of appreciation by many doctors about the variability of the disease. And we must all recognize that the symptoms and presentation vary from one to another. Much more needs to be learned.
And please, I am a celiac that happens to be a doctor, not a celiac doctor. I am no expert, and am trying to learn from those with experience. I do not diagnose or treat celiac in others. I know there is a lot of emotion related to this problem, but please don't assign negative connotations to my comments, I'm a terrible patient, with a little knowledge (and as they say that can be dangerous
But, don't blow off all of what I say either, there just may be some usefulness to challenging entrenched thoughts. I know this very well from the areas where I do have some expertise.
This board is a great resource!
thanks for the info, Thanks gfp for the extensive food for thought. You make a lot of important points. When I have the time I will definitely check out the links and try to become more educated. And Ian, gfp and others have made me think about brain fog. Hey, finally a little something positive. Maybe I'll be smarter and clearer thinking without the gluten (rather than just less flatulant
), that would be nice!Let's all try to keep an open mind and be supportive to each other while we try to deal. I certainly don't have an "attitude" at all about celiac presentations or severity of ancillary problems. I am just trying to form an educated opinion for my imperfect self. Again there are clearly differences from patient to patient, and the "classical" form does exist. That is not an attitude, just a lack of appreciation by many doctors about the variability of the disease. And we must all recognize that the symptoms and presentation vary from one to another. Much more needs to be learned.
And please, I am a celiac that happens to be a doctor, not a celiac doctor. I am no expert, and am trying to learn from those with experience. I do not diagnose or treat celiac in others. I know there is a lot of emotion related to this problem, but please don't assign negative connotations to my comments, I'm a terrible patient, with a little knowledge (and as they say that can be dangerous
But, don't blow off all of what I say either, there just may be some usefulness to challenging entrenched thoughts. I know this very well from the areas where I do have some expertise.
This board is a great resource!
I'm not trying to be mean! I'm really trying to keep my emotions in check and I apologize if I offended in any way. I just am trying to make my position clear. I know you are still learning about it and I appreciate that you are questioning, I am just a person with celiac that was dismissed by Dr.s for 33 years and the mother of a celiac child that was dismissed for the first 3 1/2 years of her life... that's all. And I have some very strong opinions!
Hey you just happen to have found yourself in a group which have a lot of bad experiences.
I myself have a particualr problem wih Dr's which is that I'm a scientist and I find the phrase medical science to be an oxymoron but many of my friends are MD's, I just wish they would be as accepting of my condition as the friends that are not
Serously you will find a lot of people here who are angry, depressed and post things they later regret; it is not co-incidence.
but an effect of being glutened. Non of this os personal against you.....
I don't really want my Dr to be a scientist but just consider, Lister is regarded as a bad example to the medical profession but he was a good scientist. You are now in the position of Warren! Its unethical to experiment on a patient ... but not yourself.
What I can say is if you want to try this (and I am an incurable scientist so I can't help poisioning myself from time to time to gague the reactions) is you will only notice it once you can see clearly again, to use the spectacle analogy.
Millions of celaics get advised a small amount is OK but just read the codex alimentarius definition of gluten free (though its not used in the US) . Does it seem logical to set a 200ppm limit for items containing starches and sugars derived from gluten containing grains yet set it at 20ppm for those naturally gluten free?
Is residual gluten from wheat starch any less toxic than contaminated gluten?
As a rhetorical second question, why is the concentration of gluten controlled but not the amount. If I eat a 10x the amount of 10ppm gluten food is that the same as 1x the amount of 100ppm?
In the McDo statement they advise that the gluten is broken down and quote gliadin equivalent of 3% ... the general public might not see the significance of this statement (indeed I guess they are not intended to) since durham wheat has a ratio of 0.8:1 gluten to glutamines but this then makes 7% gluten equivalent. Nor does it address the fact that they claim they heat breaks down the gluten, sure into the gliadins and their component amino acid chains.
I know of no research that tests for the relative damage of pure glaidin vs glaidin locked into a prolamine but common sense tells me that the pure glaidinis likely to be more of a problem mg for mg... certainly in the absense of proof I'd rather play safe, as someone else said how many cigarettes a day are OK?
Another example is spirits, since the prolamines are by definition soluble in alcohol does a low concentration in an alcoholic beverage do more or less damage? What happens to the prolamines when the alcohol is processed?
Maybe we should add paranoia to the list of associated symptoms because at times it appears the world is out to get us or to quote douglas adams, is that just perfectly normal paranoia?
I myself have a particualr problem wih Dr's which is that I'm a scientist and I find the phrase medical science to be an oxymoron but many of my friends are MD's, I just wish they would be as accepting of my condition as the friends that are not
Serously you will find a lot of people here who are angry, depressed and post things they later regret; it is not co-incidence.
but an effect of being glutened. Non of this os personal against you.....I don't really want my Dr to be a scientist but just consider, Lister is regarded as a bad example to the medical profession but he was a good scientist. You are now in the position of Warren! Its unethical to experiment on a patient ... but not yourself.
What I can say is if you want to try this (and I am an incurable scientist so I can't help poisioning myself from time to time to gague the reactions) is you will only notice it once you can see clearly again, to use the spectacle analogy.
Millions of celaics get advised a small amount is OK but just read the codex alimentarius definition of gluten free (though its not used in the US) . Does it seem logical to set a 200ppm limit for items containing starches and sugars derived from gluten containing grains yet set it at 20ppm for those naturally gluten free?
Is residual gluten from wheat starch any less toxic than contaminated gluten?
As a rhetorical second question, why is the concentration of gluten controlled but not the amount. If I eat a 10x the amount of 10ppm gluten food is that the same as 1x the amount of 100ppm?
In the McDo statement they advise that the gluten is broken down and quote gliadin equivalent of 3% ... the general public might not see the significance of this statement (indeed I guess they are not intended to) since durham wheat has a ratio of 0.8:1 gluten to glutamines but this then makes 7% gluten equivalent. Nor does it address the fact that they claim they heat breaks down the gluten, sure into the gliadins and their component amino acid chains.
I know of no research that tests for the relative damage of pure glaidin vs glaidin locked into a prolamine but common sense tells me that the pure glaidinis likely to be more of a problem mg for mg... certainly in the absense of proof I'd rather play safe, as someone else said how many cigarettes a day are OK?
Another example is spirits, since the prolamines are by definition soluble in alcohol does a low concentration in an alcoholic beverage do more or less damage? What happens to the prolamines when the alcohol is processed?
Maybe we should add paranoia to the list of associated symptoms because at times it appears the world is out to get us
or to quote douglas adams, is that just perfectly normal paranoia?
Radman you need to understand that for most of us doctors have done far more harm than good to us. Aren't doctors supposed to first do no harm? It seems all doctors know how to do anymore is be dope dealers. We are thrilled that a doctor has FINALLY decided to take some initiative and learn about celiac. We don't mean to make any personal attacks but it is hard for our anger to not come through sometimes.
Hi Radman! Welcome to the board!
This is an interesting thread. It reminds us all that doctors are not the "walking medical encylopedias" we mistakenly think they should be. So many of us have the misconception that if you have become a doctor, you automatically should know EVERYTHING there is to know about EVERY single disease plaguing this world. We are desperately trying to reach out to the medical community to educate them about celiac, but the thought of "us laymen" trying to educate doctors doesn't go over too well in many circles (including the medical community, of course! )
Below is a link that I think you will find interesting in regards to our "brainstorming" and trying to get our message out:
http://www.glutenfreeforum.com/index.php?showtopic=13475
Also, I am also of the opinion that even the most miniscule amount of gluten will do damage. I look at it this way. Gluten is toxic to us. Our body identifies it as poison. Look at it like astbestos. It is okay to continue to expose yourself to low level asbestos for any length of time? With gluten, any low level continued consumption of it is akin to slowly poisoning yourself.
Also, you state that at 42 years of age (btw, I am 42 also!) you have not developed any other autoimmune disorders, but then in the next paragraph, you go on to state that believe you already have developed osteoporosis to some degree. That is contradictory, since osteoporosis is considered autoimmune (see below link).
http://www.nlm.nih.gov/medlineplus/ency/encyclopedia_O.htm
Personally, I am thrilled that we have a medical practitioner on board here to give us a difference point of view and a different perspective on things. (Although, please do not enter any thread that says "doctor bashing" in the title!!! ) There are a few of those around! 
The best advice I can give you is to read, read, read (this board). The information on here is incredible. The people on here are awesome, supportive, informative and wonderful. Also, if you ever see a copy of "Dangerous Grains" around in a bookstore anywhere, pick it up - it's an eye-opener!
Welcome to the community!
By the way, our motto here is that no question is too stupid to ask. The ONLY stupid question is the one that is NOT asked! And this includes doctors, too. Don't be afraid that you will be pre-judged and "expected to know" everything just because you are a doctor. Celiac is a learning curve for everyone!
Karen
This is an interesting thread. It reminds us all that doctors are not the "walking medical encylopedias" we mistakenly think they should be. So many of us have the misconception that if you have become a doctor, you automatically should know EVERYTHING there is to know about EVERY single disease plaguing this world. We are desperately trying to reach out to the medical community to educate them about celiac, but the thought of "us laymen" trying to educate doctors doesn't go over too well in many circles (including the medical community, of course!
)Below is a link that I think you will find interesting in regards to our "brainstorming" and trying to get our message out:
http://www.glutenfreeforum.com/index.php?showtopic=13475
Also, I am also of the opinion that even the most miniscule amount of gluten will do damage. I look at it this way. Gluten is toxic to us. Our body identifies it as poison. Look at it like astbestos. It is okay to continue to expose yourself to low level asbestos for any length of time? With gluten, any low level continued consumption of it is akin to slowly poisoning yourself.
Also, you state that at 42 years of age (btw, I am 42 also!) you have not developed any other autoimmune disorders, but then in the next paragraph, you go on to state that believe you already have developed osteoporosis to some degree. That is contradictory, since osteoporosis is considered autoimmune (see below link).
http://www.nlm.nih.gov/medlineplus/ency/encyclopedia_O.htm
Personally, I am thrilled that we have a medical practitioner on board here to give us a difference point of view and a different perspective on things. (Although, please do not enter any thread that says "doctor bashing" in the title!!!
) There are a few of those around! The best advice I can give you is to read, read, read (this board). The information on here is incredible. The people on here are awesome, supportive, informative and wonderful. Also, if you ever see a copy of "Dangerous Grains" around in a bookstore anywhere, pick it up - it's an eye-opener!
Welcome to the community!
By the way, our motto here is that no question is too stupid to ask. The ONLY stupid question is the one that is NOT asked! And this includes doctors, too. Don't be afraid that you will be pre-judged and "expected to know" everything just because you are a doctor. Celiac is a learning curve for everyone!
Karen
I won't go into my over 30 years of being treated like a hyppchrondiac by the majority of doctors. Some mini flu's (as I called them) too frequently to be normal with vomiting and D. So many meds that I had to really concentrate to not take the wrong one at the wrong time. MANY diagnosis' that went away after going gluten free after my Celiac diagnosis. I was not the classic Celiac until several months before and then I had already been labed a hypo so I was blown off until "the lightbulb went off" according to my doctor. He said at the follow up appointment that I probably was two weeks away from no recovery. My intelligence has dropped considerably and after two years gluten-free, I don't see how it will improve much more. MY concern and why I am writing this posting to this thread, is that you are a Cancer doctor. From the few books that I have read about Cancer and Celiac, there is SOMETIMES a correlation. They has been, many times a marked improvement with a Cancer patient when they go gluten-free. Maybe it would not hurt, that when you run blood tests on your patients, that you throw in the Celiac FULL PANEL test, as just a precaution.
When gluten is ingested, antibodies start attacking the villi in the intestine, which can result in many nutritional, mineral, and vitamin disorders. In order to stop these antibodies from attacking, an individual must be 100% gluten free. Celiac disease expresses itself, symptom wise, in many different ways. Some people have one or two symptoms like anemia and fatigue and others like myself had all the classic symptoms; however, in each case, the villi damage can be the same. I personally cannot cheat because my reactions are so severe. I also have a wheat allergy, so when I accidently ingest wheat, I get celiac disease symptoms and wheat allergy symptoms, not fun!
I should also mention that celiac does present itself so differently in each individual. I myself am plagued by chronic diarrhea (for over a decade now), severe anemia, brain fog (I hate that stoned feeling!) and typical gastro-intestinal difficulties (pain, excessive gas, etc. etc.) My villi are as flat today as they were when diagnosed 4 years ago (for the second time, but that's another story..... 
) Although my bloodwork shows that I am religiously following the gluten free diet and my antibodies are in the normal range, my body is just too damaged at this point to heal.
The funny thing is, when I had my bone density test, my bones were stronger than Kryptonite! Go figure, eh? Just goes to show you, genetics still plays a huge part, regardless of severity of disease. Obviously, my family might have the genes that destroy parts of our bodies, but when it comes to our bones, we are a hearty lot! That is what makes this disease so incidious, it is quite sneaky......
Karen
) Although my bloodwork shows that I am religiously following the gluten free diet and my antibodies are in the normal range, my body is just too damaged at this point to heal.The funny thing is, when I had my bone density test, my bones were stronger than Kryptonite!
Go figure, eh? Just goes to show you, genetics still plays a huge part, regardless of severity of disease. Obviously, my family might have the genes that destroy parts of our bodies, but when it comes to our bones, we are a hearty lot! That is what makes this disease so incidious, it is quite sneaky......Karen
I understand the frustration, believe me. Realize that I have been a physician since 1989 but only recently made my own diagnosis of celiac. That should tell you something. It is hardly my attitudes that caused my own delayed diagnosis, and resulting years of misery. It is a lack of appreciation for how common this problem is and the fact that the symptoms are highly variable.
This lack of appreciation can be changed. Despite what some of your experiences may tell you, I assure you that doctors are not monolithic jerks and shouldn't be stereotyped that way. They just need to be better informed. I share an astonishment that this has not already occurred, but it is what it is. Anger won't change it. How about a patient advocacy group for celiacs that interfaces with the professional societies, the public, payors, and government to increase awareness and improve education? This has worked wonders in the cancer field (with some caveats).
And gfm, you make very valid scientific points. My interest, though, has to do with the effects of various amounts of gluten exposure to various patients with differing gluten reactions, with the endpoint being real clinical outcomes, ie. effects on frequency of various long term morbidities such as osteoporosis, intestinal lymphoma, etc. Again, with my reactions I don't care about occasional symptom flares, I can deal with that with my current level of symptoms. I care about real world long term consequences of this. I will be trying to find some clinical research that may shed some light on this, as well as listening carefully to what others on this board tell me about their own experiences.
I do wonder about what symptoms I may have, and not appreciate, due to their slow development (as has been pointed out very well to me here). As I remain gluten free, I am hopeful that I may begin to feel better in ways that I did not expect.
Obviously, the prudent person would simply avoid all gluten exposure until we know more about the above. As I've said, however, there is a tremendous amount we don't know about this disease, and everyone wants to apply their personal experience to others as if we are all the same. I don't believe we are all the same. If I question the 100% gluten free all the time approach, it is just curiosity and I certainly don't advocate one way or another. Just learning...
This lack of appreciation can be changed. Despite what some of your experiences may tell you, I assure you that doctors are not monolithic jerks and shouldn't be stereotyped that way. They just need to be better informed. I share an astonishment that this has not already occurred, but it is what it is. Anger won't change it. How about a patient advocacy group for celiacs that interfaces with the professional societies, the public, payors, and government to increase awareness and improve education? This has worked wonders in the cancer field (with some caveats).
And gfm, you make very valid scientific points. My interest, though, has to do with the effects of various amounts of gluten exposure to various patients with differing gluten reactions, with the endpoint being real clinical outcomes, ie. effects on frequency of various long term morbidities such as osteoporosis, intestinal lymphoma, etc. Again, with my reactions I don't care about occasional symptom flares, I can deal with that with my current level of symptoms. I care about real world long term consequences of this. I will be trying to find some clinical research that may shed some light on this, as well as listening carefully to what others on this board tell me about their own experiences.
I do wonder about what symptoms I may have, and not appreciate, due to their slow development (as has been pointed out very well to me here). As I remain gluten free, I am hopeful that I may begin to feel better in ways that I did not expect.
Obviously, the prudent person would simply avoid all gluten exposure until we know more about the above. As I've said, however, there is a tremendous amount we don't know about this disease, and everyone wants to apply their personal experience to others as if we are all the same. I don't believe we are all the same. If I question the 100% gluten free all the time approach, it is just curiosity and I certainly don't advocate one way or another. Just learning...
Radman,
You are very correct in your statement that the medical establishment needs to be more informed.
My own family doctor (who is about the same age as me) herself has admitted (after decades of my unexplained gluten-related medical issues that finally were answered with the celiac diagnosis through bloodwork) that the only thing she was taught in med school regarding celiac was to look for it in malnourished children with protruding bellies. Since my diagnosis and her self-educating herself regarding celiac, she is now much more aware of its prevalence and it is way up there now on her list of things to look for first. In fact, she just diagnosed a patient of hers who is 80, and has suffered for years upon years. Hey, it's never too late!
It my most fervent hope that you feel welcomed here to this board and this community. If you ever do come across a post that has a "bitter" feeling to it, please take it with a grain of salt. There are many people here who have basically been ridiculed relentlessly and told by their doctors they are hypochondriacs and "it's all in their head", or they are "depressed", the list goes on....... before the bloodwork finally shows their antibodies are through the roof........
We really can be quite a wacky lot! Hope you bring your sense of humour to the board also! We really enjoy those! A lot of us use humour as a way of coping with this disease, it makes it that much more bearable......
Karen
You are very correct in your statement that the medical establishment needs to be more informed.
My own family doctor (who is about the same age as me) herself has admitted (after decades of my unexplained gluten-related medical issues that finally were answered with the celiac diagnosis through bloodwork) that the only thing she was taught in med school regarding celiac was to look for it in malnourished children with protruding bellies. Since my diagnosis and her self-educating herself regarding celiac, she is now much more aware of its prevalence and it is way up there now on her list of things to look for first. In fact, she just diagnosed a patient of hers who is 80, and has suffered for years upon years. Hey, it's never too late!
It my most fervent hope that you feel welcomed here to this board and this community. If you ever do come across a post that has a "bitter" feeling to it, please take it with a grain of salt. There are many people here who have basically been ridiculed relentlessly and told by their doctors they are hypochondriacs and "it's all in their head", or they are "depressed", the list goes on....... before the bloodwork finally shows their antibodies are through the roof........
We really can be quite a wacky lot! Hope you bring your sense of humour to the board also! We really enjoy those!
A lot of us use humour as a way of coping with this disease, it makes it that much more bearable......Karen
x 
I'm not sure if very small amounts will cause long term problems, and frankly, you sound unwilling to believe it anyway. I'll just say that I "treat it like an allergy" because I don't like feeling sick and I don't like breaking out in a DH rash (aka living nightmare). I also get hives now and joint pain. I'm not sure why anyone would expose themselves to this intentionally, or be lax in their habits regarding cross contamination.
Just a couple thoughts:
I would recommend reading "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green of Columbia University. Came out this spring. Great book and gives great insight to celiac disease.
Something that I find fascinating is that 70% of Celiacs (whether they are diagnosed or undiagnosed) are "silent Celiacs"....i.e., no symptoms. at all. However, the autoimmune reaction is still occurring and damage is being done. So for someone to eat Rice Krispies and have no symptoms, and me to eat Rice Krispies and be miserable for days or weeks.....the outward consequences are different, but the villi in both of our intestines are being blunted.
I would recommend reading "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green of Columbia University. Came out this spring. Great book and gives great insight to celiac disease.
Something that I find fascinating is that 70% of Celiacs (whether they are diagnosed or undiagnosed) are "silent Celiacs"....i.e., no symptoms. at all. However, the autoimmune reaction is still occurring and damage is being done. So for someone to eat Rice Krispies and have no symptoms, and me to eat Rice Krispies and be miserable for days or weeks.....the outward consequences are different, but the villi in both of our intestines are being blunted.
Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
QUOTE(radman @ Mar 26 2006, 01:25 PM)
Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
my favorite pizza is made using Kinnikkinick's pizza crust, hunt's tomato paste, garlic powder, gluten-free pantry Italian seasoning and Mozzerella Cheese with Hormel Pepperoni... love it...
second fave pizza is Chebe bread mix (without using cheese in the mix and adding baking soda and baking powder to the mix-instructions on bag) baking crust first then adding toppings and baking til done
my daughter's fave pizza is Amy's rice crust cheese pizza, with extra cheese on it...
QUOTE(radman @ Mar 26 2006, 10:25 AM)
Thanks everyone. Wow by the time I get through the books and articles, maybe I should take up a sideline practice in the field
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
And frenchiemama, come on, "frankly it doesn't sound like you'd believe it anyway", where did that come from. I've been carefully listening to all the helpful comments others have offered, and I appreciate all of them.
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
To me it just seems like you came on here with your mind already made up. Just my opinion.
Radman,
The first thing you need to do if you are going to consider weeding out all sources of gluten is to download the delphi list. This is a list of mainstream gluten free food items in the supermarket. The list is categorized into convenient categories to save time when you are in the middle of the aisle trying to read labels! (Picture this: me in the middle of the aisle with TWO shopping carts, the one I am pushing holding my twin boys and youngest girl and the one I am pulling holding all of my groceries! EVERYONE knew when I was there!! LOL). Anyway, this list is an absolute godsend.
Go to http://forums.delphiforums.com/n/main.asp?...tyurl=%2Fceliac
on the left hand side, click on "Health & Wellness". (You will need to register, but it is free and it is soooo worth it!)
Then click on "On Line Celiac Support Group" (usually the first forum that comes up).
Then scroll down to "Gluten Free Products List". When you click on that, the list will come up in all the different categories. It is a wonderful resourse.
Also, there are some mainstream companies who are very celiac friendly. Kraft is one of them. Kraft is a safe choice for us as they will ALWAYS clearly indicate if there is any gluten ingredients. We love Kraft!
Also, if you happen to love cooking and want to experiment with gluten-free recipes, there is a section called the "Best of Mirielle". Mirielle is a celiac lady who owns her own gluten free restaurant, she is an amazing woman and she posts thousands of recipes for us.
Okay, I am sure you are past the "information overload" point, so I'll stop there!
Take care,
Karen
The first thing you need to do if you are going to consider weeding out all sources of gluten is to download the delphi list. This is a list of mainstream gluten free food items in the supermarket. The list is categorized into convenient categories to save time when you are in the middle of the aisle trying to read labels! (Picture this: me in the middle of the aisle with TWO shopping carts, the one I am pushing holding my twin boys and youngest girl and the one I am pulling holding all of my groceries!
EVERYONE knew when I was there!! LOL). Anyway, this list is an absolute godsend.Go to http://forums.delphiforums.com/n/main.asp?...tyurl=%2Fceliac
on the left hand side, click on "Health & Wellness". (You will need to register, but it is free and it is soooo worth it!)
Then click on "On Line Celiac Support Group" (usually the first forum that comes up).
Then scroll down to "Gluten Free Products List". When you click on that, the list will come up in all the different categories. It is a wonderful resourse.
Also, there are some mainstream companies who are very celiac friendly. Kraft is one of them. Kraft is a safe choice for us as they will ALWAYS clearly indicate if there is any gluten ingredients. We love Kraft!
Also, if you happen to love cooking and want to experiment with gluten-free recipes, there is a section called the "Best of Mirielle". Mirielle is a celiac lady who owns her own gluten free restaurant, she is an amazing woman and she posts thousands of recipes for us.
Okay, I am sure you are past the "information overload" point, so I'll stop there!
Take care,
Karen
Radman:
I for one am tickeled silly to have a doctor on board. Welcome, welcome, welcome.
I have been hanging around this site for about 7 months and the folks here extremely intellegent, dilligent and wonderfully caring. I think that you will find this as well.
Before dx with Celiac, I literally could not leave my house. (The bathroom as five seconds away, and I usually got there in six seconds
) I have learned so much here as my doctor had no information to give me.
You are probably overwhelmed by now with all the sources submitted to you. Please take some time here to read through alot of these posts. It has been a God-send to me.
Welcome again and we are all glad that the diet is working for you.
Lisa
I for one am tickeled silly to have a doctor on board. Welcome, welcome, welcome.
I have been hanging around this site for about 7 months and the folks here extremely intellegent, dilligent and wonderfully caring. I think that you will find this as well.
Before dx with Celiac, I literally could not leave my house. (The bathroom as five seconds away, and I usually got there in six seconds
) I have learned so much here as my doctor had no information to give me. You are probably overwhelmed by now with all the sources submitted to you. Please take some time here to read through alot of these posts. It has been a God-send to me.
Welcome again and we are all glad that the diet is working for you.
Lisa
QUOTE(radman @ Mar 26 2006, 12:25 PM)
Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza
It's okay, but no cigar. I love making my own crust with Bette Hagman's receipe. Fantastic!!!
QUOTE(frenchiemama @ Mar 26 2006, 07:34 PM)
To me it just seems like you came on here with your mind already made up. Just my opinion.
Yes but to be fair he has been flooded with information, you can't expect a MD to just accept it all at face value and what you or I skim or read quickly and extract what we understand is more work for a MD that needs to look into deeper implications and digest it a lot deeper, not to mention cast away years of misconceptions.
He is bound to want to check the medical journals and there is a lot of information, a lot of them contradictory!
When you think we came to it from the symptoms, most of us had never heard of celiac disease before we or a loved one was diangnosed whereas an MD has forget to get rid of years of knowing about a extremely rare disease only children get (as it were)
I agree, gfp. We all agree that there is a lengthy process (i.e. grieving, denial, etc.) to go through before we get to the acceptance point. I am sure that doctors are no different. We all deserve time to let things sink in, and we all have to remember how difficult it was in the beginning to grasp the severity of this disease.
Karen
Karen
Very very true. I had never heard of Celiac Disease before mine kicked in, as I am sure many others were in the same boat. If it were not for the interet and this site, I would still be in the bathroom thinking I was dying of cancer.
QUOTE(Canadian Karen @ Mar 26 2006, 08:48 PM)
I agree, gfp. We all agree that there is a lengthy process (i.e. grieving, denial, etc.) to go through before we get to the acceptance point. I am sure that doctors are no different. We all deserve time to let things sink in, and we all have to remember how difficult it was in the beginning to grasp the severity of this disease.
Karen
Karen
I have yet to know a single person that has gone all the way gluten-free... (not just the eating stuff that seems to be OK) that didn't first go for denial...
hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...
ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.
I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....
I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.
QUOTE(gfp @ Mar 26 2006, 11:56 AM)
I have yet to know a single person that has gone all the way gluten-free... (not just the eating stuff that seems to be OK) that didn't first go for denial...
hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...
ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.
I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....
I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.
hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...
ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.
I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....
I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.
I never went through denial. I didn't like it, but I could clearly see the damage that gluten was doing to me physically. Since being diagnosed on April 21st of last year I have never once eaten gluten intentionally.
In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.
QUOTE
And gfm, you make very valid scientific points. My interest, though, has to do with the effects of various amounts of gluten exposure to various patients with differing gluten reactions, with the endpoint being real clinical outcomes, ie. effects on frequency of various long term morbidities such as osteoporosis, intestinal lymphoma, etc. Again, with my reactions I don't care about occasional symptom flares, I can deal with that with my current level of symptoms. I care about real world long term consequences of this. I will be trying to find some clinical research that may shed some light on this, as well as listening carefully to what others on this board tell me about their own experiences.
I kind of doubt they'd do that sort of study on humans, at least intentionally, since it is kind of like wondering how much poison you can give someone without making them really, really sick. Instead, wouldn't you do things like rat/mice studies?
QUOTE(frenchiemama @ Mar 26 2006, 09:09 PM)
I never went through denial. I didn't like it, but I could clearly see the damage that gluten was doing to me physically. Since being diagnosed on April 21st of last year I have never once eaten gluten intentionally.
In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.
In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.
The question really is do you eat out? Do you have gluten in your house?
I notice you say intentionally which leads me to beleive you have been caught out?
I started off eating bread wioth the gluten free logo which passed the 200ppm test required in the UK. I took medical advice that this was safe.and would be fine (which turned out to be wrong).. I took my food and ate it in dangerous places (like at work when someone else may have dropped crumbs on your desk and I have risked things that have had "natural flavouring" on the packet.
.. and I have come to the conclusion... as you that
QUOTE
"I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc."
is not even close to gluten-free.... heck, I take risks from time to tinme but eating a burger that touched a bun? That goes out of the realm of playing russian roulette and into playing russian roulette with six bullets and going first! I am now fastidious about washing my hands before I eat, not touching my mouth when im out in case for instance my train ticket goes through the same machine as someone elses who has been eating gluten... because it took me time to learn that 100% gluten free is not eating something out of any tin or packet ..
I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?
My gp who diagnosed me has now diagnosed over 60 patients with this disease. He now knows how to diagnose, but knows nothing about the diasease itself. I am now giving him and his PA books to read which they are doing. He diagnosed one women who had a rash on her hands for 15 years and no one could help her clear it up. My dr. did know that D H was a sign of Celiac, after he ran my blood test and he tested her. Her count came up very high. Even tho my gp feels that I definately had D H, I do not have a firm diagnosis with biopsy. The rash on my hands disappeared within 6 months after going gluten-free and there was nothing to test when I finally had to see a dermologist for the Morphia Scleroderma. 6 months after my diagnosis part of my back caved in and they took 3 biopsies and I was diagnose with Morphia Scleroderma. I have now been diagnosed with a neuropathy in both feet. My hands get tested this coming week. My Osteo test came back normal and I am so very thankful for that and my genes. I am soon to be 64 and since I was so near death by the time my dr. said Celiac, I guess I am where I am going to be. I still hope not as I am not ready to lay down and die. The exhaustion I am living with does not make for a good quality of life. I am still young enough that there are still things I want to do. I guess because this undiagnosed disease almost killed me, that I am more then happy to embrace this diet completely. I have to admit that when I read that I would need my own toaster, I thought overkill and did not do that for the first year. I did not make toast very often, but as my body healed, I was noticing how a crumb left on the counter would make me sick. We now have two toasters and my husband uses only one section of the counter for his bread and toast. I also have to say that I have never been a health vitamin junky, but now find that I am taking so much more today that I have ever done in my life. Hoping for some energy I suppose. I run my vitamin list with my gp's pa and we make sure I am getting enough and not too much of the kind that can hurt me. I had never heard of this disease until two years ago. I certainly will not lecture on what hidden things can be going on within your body. Each of us must make our own decisions on this disease. Thank you for joining this forum and hopefully as you gain more knowledge you will be happy to share it with us.
My experience has been that after going gluten-free, so many problems that I didn't know were related, went away. I used to have reflux all the time (I was about to have my second surgery), I had daily headaches, I used to pee all the time, I had acne on my back for the last 17 years, I was taking daily allergy medication and tons of reflux medication. All those things went away after going gluten-free. Of course, all my intestinal symptoms went away as well. I never thought those things would be related.
If you have any health problems at all, you may not realize that they are due to celiac and it may only becme obvious after you are gluten-free for a while. I would think it is worth a try. Also, if it caused all these random health problems for me, if you aren't 100% gluten-free, what problems will you have in the future without even realizing they are due to gluten?
Also, the reason that I'm so cautious with the food I eat is because even a very small amount will get me very sick. I have eaten a supposedly gluten-free Amy's meal and been sick for days when that is the only thing that could have caused it. It isn't worth it to me for the short term pain or the long term unknown.
Only you can decide how much gluten is too much for you, but the general concensus on the board is that you must be 100% gluten-free.
If you have any health problems at all, you may not realize that they are due to celiac and it may only becme obvious after you are gluten-free for a while. I would think it is worth a try. Also, if it caused all these random health problems for me, if you aren't 100% gluten-free, what problems will you have in the future without even realizing they are due to gluten?
Also, the reason that I'm so cautious with the food I eat is because even a very small amount will get me very sick. I have eaten a supposedly gluten-free Amy's meal and been sick for days when that is the only thing that could have caused it. It isn't worth it to me for the short term pain or the long term unknown.
Only you can decide how much gluten is too much for you, but the general concensus on the board is that you must be 100% gluten-free.
QUOTE(radman @ Mar 26 2006, 08:59 AM)
Thanks folks, and I do respect your wisdom of experience.
However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.
Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.
I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.
Let's think about the medical problems associated with untreated or poorly treated:
Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.
Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.
Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...
Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.
These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.
This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.
By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.
However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.
Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.
I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.
Let's think about the medical problems associated with untreated or poorly treated:
Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.
Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.
Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...
Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.
These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.
This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.
By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.
Dr.,
I am a 44 year old woman and I have been recently diagnosed with Rheumatoid Arthritis, maybe. I have had 3 blood tests and the Rheumatologist could not definitively diagnose me, even though my RA factor was above normal each time I was tested. All she could say is I have some sort of auto-immune problem. Fast-forward a few months later - I take a stool test and gene test and both come back positive for both gluten and the celiac gene. I had no OTHER symptoms except for bloating and very gassy.
I know most doctors use the gold standard of the biopsy, but there have been many patients who have tested negative for that as well as the blood test and continue to be sick.
The big test is how one feels after coming off the gluten for a period of time.
After coming off gluten for over a month for me, the bloating and gas has subsided, substantially. The RA symptoms have not gone away, but I expect that will take at least six months before I notice a difference. I have "cheated" a couple of times, and I have paid the price intestinally.
Please read Dangerous Grains, this provides some very insightful information about the connection to Celiac and a whole list of other illnesses. There are also a lot of articles in Medical Journals on this subject as well.
Please have an open mind about this and not rely completely on your medical education. Dr.'s are taught to treat the symptoms versus getting to the root of the problem and that is why a lot of illnesses go misdiagnosed. IBS and Acid Reflux are great examples of that.
I respect your opinion and good luck.
I know this is all a lot to take in. I just want to assure you that we are talking to you the same way we would talk to anyone who has celiac (self-diagnosed or otherwise) and isn't taking care of themselves. Every once in a while we get the same questions you posed, and we are just as adamant about our views. So don't take it as being jumped on because you're a doctor. The question comes up every once in a while.
I really hope you go completely hard-core gluten-free for at least a month, and then evaluate your level of gluten intolerance. I don't believe in levels. But that wasn't always the case.
The reason I came upon celiac was trying to find a solution to my flatulance/diarrhea issues. But those weren't my only health problems.
The most life-impacting thing that went away for me was the constant pain I was in. I'm not talking about stomach pain. I'm talking about pain in my back and body that restricted my movements so badly that at times I could barely walk. I had been diagnosed with low lumbar scoliosis and had assumed that that was the cause of my problems. It was so bad that I was pretty sure I was going to wind up in a wheelchair within a few years.
After I went gluten-free, it all just went away. This was after three days being completely gluten-free. It was like someone flipped a switch and it was just *POOF* all gone.
I never would have even suspected that my pain was in any way related to gluten. But it was.
In a matter of a few days, I went from not even being able to bend over to pick something up off the ground (I used a reacher) to being able to move furniture around. I also now work out every day, including strength training. One of my goals now is to run a 5k before I'm 40. The best part though is just being able to play with my kids. I used to have to sit in a certain chair and just watch them play.
Every once in a while my back goes out due to my scoliosis, but it's rare. It doesn't restrict my activities at all.
I wonder now if I had pursued a diagnosis, and not just assumed it was due to scoliosis, if I would have ended up with a diagnosis of fibromyalgia. I looked into it after the fact and the trigger points of fibromyalgia pretty well lined up with the points where I had my worst pain.
Another bizarre thing that happened to me was that my headaches went away. The bizarre part was that I didn't even know I was getting headaches. A year ago I would have told you that I never got headaches. It wasn't until I went gluten-free that I realized that my head didn't hurt anymore. Now THAT was weird to realize that I had had a headache 24/7 for God knows how many years at that point.
Another thing is that I look different in the face. When I'm on gluten, my face has a kind of doughy texture. When I went gluten-free, I looked like I had lost weight after just a couple days, just by the appearance of my face.
I also have other things that went away. I don't squint anymore (didn't realize I was doing it either). I don't have to wear sunglasses when I'm outside (even on an overcast day). My hair isn't falling out. My scalp isn't itchy. I'm not short-tempered (any more than any other sahm of a 2 and a 3 year old ).
I also had the brainfog that everyone mentioned, but it didn't impact absorbing knowledge. I'm an information junkie, with a limited medical information background (used to be a medical transcriptionist) and I have never had a problem following, absorbing or retaining that type of information. Brainfog for me was more just having a hard time remembering short-term things. Like what I had for breakfast that morning, or if I ate at all. I also had a hard time keeping a grocery list. From the time I had the thought that I needed something to the 30 seconds it took to walk to the kitchen to put it on the list, I would have forgotten what it was I needed.
My point is, unless you go completely gluten-free, you will never know how gluten effects your body and your brain. You already know that it effects your digestion. But maybe it effects other things that nobody could predict. You owe it to yourself to know. Everyone is different.
So just take a month or two at least to be really strict about it. Then have a slice of bread, and see what happens.
I actually was going to eat gluten right before my last GI appt so I could let my doctor know what my symptoms were as far as eating something on purpose. I bought a pkg of mini donuts just for the occasion. I couldn't even make myself do it. The memory of the taste of them was making my mouth water. But I no more wanted to eat the donuts than I would have wanted to jam a fork through my hand.
Well I hope you decide to go gluten-free, and just see what happens. You're life may be completely changed.
Nancy
I really hope you go completely hard-core gluten-free for at least a month, and then evaluate your level of gluten intolerance. I don't believe in levels. But that wasn't always the case.
The reason I came upon celiac was trying to find a solution to my flatulance/diarrhea issues. But those weren't my only health problems.
The most life-impacting thing that went away for me was the constant pain I was in. I'm not talking about stomach pain. I'm talking about pain in my back and body that restricted my movements so badly that at times I could barely walk. I had been diagnosed with low lumbar scoliosis and had assumed that that was the cause of my problems. It was so bad that I was pretty sure I was going to wind up in a wheelchair within a few years.
After I went gluten-free, it all just went away. This was after three days being completely gluten-free. It was like someone flipped a switch and it was just *POOF* all gone.
I never would have even suspected that my pain was in any way related to gluten. But it was.
In a matter of a few days, I went from not even being able to bend over to pick something up off the ground (I used a reacher) to being able to move furniture around. I also now work out every day, including strength training. One of my goals now is to run a 5k before I'm 40. The best part though is just being able to play with my kids. I used to have to sit in a certain chair and just watch them play.
Every once in a while my back goes out due to my scoliosis, but it's rare. It doesn't restrict my activities at all.
I wonder now if I had pursued a diagnosis, and not just assumed it was due to scoliosis, if I would have ended up with a diagnosis of fibromyalgia. I looked into it after the fact and the trigger points of fibromyalgia pretty well lined up with the points where I had my worst pain.
Another bizarre thing that happened to me was that my headaches went away. The bizarre part was that I didn't even know I was getting headaches. A year ago I would have told you that I never got headaches. It wasn't until I went gluten-free that I realized that my head didn't hurt anymore. Now THAT was weird to realize that I had had a headache 24/7 for God knows how many years at that point.
Another thing is that I look different in the face. When I'm on gluten, my face has a kind of doughy texture. When I went gluten-free, I looked like I had lost weight after just a couple days, just by the appearance of my face.
I also have other things that went away. I don't squint anymore (didn't realize I was doing it either). I don't have to wear sunglasses when I'm outside (even on an overcast day). My hair isn't falling out. My scalp isn't itchy. I'm not short-tempered (any more than any other sahm of a 2 and a 3 year old
). I also had the brainfog that everyone mentioned, but it didn't impact absorbing knowledge. I'm an information junkie, with a limited medical information background (used to be a medical transcriptionist) and I have never had a problem following, absorbing or retaining that type of information. Brainfog for me was more just having a hard time remembering short-term things. Like what I had for breakfast that morning, or if I ate at all. I also had a hard time keeping a grocery list. From the time I had the thought that I needed something to the 30 seconds it took to walk to the kitchen to put it on the list, I would have forgotten what it was I needed.
My point is, unless you go completely gluten-free, you will never know how gluten effects your body and your brain. You already know that it effects your digestion. But maybe it effects other things that nobody could predict. You owe it to yourself to know. Everyone is different.
So just take a month or two at least to be really strict about it. Then have a slice of bread, and see what happens.
I actually was going to eat gluten right before my last GI appt so I could let my doctor know what my symptoms were as far as eating something on purpose. I bought a pkg of mini donuts just for the occasion. I couldn't even make myself do it. The memory of the taste of them was making my mouth water. But I no more wanted to eat the donuts than I would have wanted to jam a fork through my hand.
Well I hope you decide to go gluten-free, and just see what happens. You're life may be completely changed.
Nancy
QUOTE(gfp @ Mar 26 2006, 12:41 PM)
The question really is do you eat out? Do you have gluten in your house?
I notice you say intentionally which leads me to beleive you have been caught out?
I notice you say intentionally which leads me to beleive you have been caught out?
Oh yes. I have been glutened by mistake. Mostly by restaurant staff who don't take my requests seriously (once I get sick at a place, I don't go back. My "safe" restaurant list is getting very, very short.) and even by my loving and thoughtful husband, who didn't realize that making my gluten-free pizza on the oven rack where he cooks his regular pizzas was a bad idea (until it was too late).
QUOTE(gfp @ Mar 26 2006, 12:41 PM)
I am now fastidious about washing my hands before I eat, not touching my mouth when im out in case for instance my train ticket goes through the same machine as someone elses who has been eating gluten... because it took me time to learn that 100% gluten free is not eating something out of any tin or packet ..
I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?
I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?
I had to start bringing my own silverware to work, after I realized that I had been glutened by using the plastic silverware from the bins in the breakroom. D'oh. As far as I'm concerned, there is no such thing as too careful.
ETA
And yes, my coworkers laugh at the fact that I bring my own untensils.
VERY STRICT (in reply to your question)
You are a CANCER DOCTOR? Do you mean you are an ONCOLOGIST? (I have never heard an oncologist refer to themselves as a "cancer doctor", but I digress)
You state that a little malabsorption every now and then won't lead to osteoporosis? Well I can tell you from experience that a little (albeit, a lot) of gluten (prior to my diagnosis) led to osteopenia. I can only imagine what a little more every now and then will do. That is, osteoporosis, fractures, etc.
I guess I am more appalled by your lack of seriousness that came across in your posting about Celiac as "cancer doctor"
You are a CANCER DOCTOR? Do you mean you are an ONCOLOGIST? (I have never heard an oncologist refer to themselves as a "cancer doctor", but I digress)
You state that a little malabsorption every now and then won't lead to osteoporosis? Well I can tell you from experience that a little (albeit, a lot) of gluten (prior to my diagnosis) led to osteopenia. I can only imagine what a little more every now and then will do. That is, osteoporosis, fractures, etc.
I guess I am more appalled by your lack of seriousness that came across in your posting about Celiac as "cancer doctor"
for the record, maybe he just said "cancer doctor" because some people wouldn't know what an oncologist is....there are many forms of doctors and I myself do not know them all.
I'm just saying people, let's cut radman some slack, he came on here to get some help which i believe many people have given him, but to question who he says he is and what he says he does....well we could start a jerry springer topic board...i'm sure it'd be good for a laugh or two.
radman-
i'd follow the diet as best as you can, like many have said, there really is no point in getting and feeling sick if you can prevent it~
I'm just saying people, let's cut radman some slack, he came on here to get some help which i believe many people have given him, but to question who he says he is and what he says he does....well we could start a jerry springer topic board...i'm sure it'd be good for a laugh or two.
radman-
i'd follow the diet as best as you can, like many have said, there really is no point in getting and feeling sick if you can prevent it~
When I am at work, I clean off my desk and anywhere I have to sit or touch. I wear vinyl gloves and clean it with alcohol wipes. I was glutened at work a few times from bread crumbs I couldn't even see that got on my hands and I touched my face. I don't care to suffer so, I am dilligent about the gluten things and still sometimes I get glutened.
QUOTE(Mahee34 @ Mar 26 2006, 05:45 PM)
for the record, maybe he just said "cancer doctor" because some people wouldn't know what an oncologist is....there are many forms of doctors and I myself do not know them all.
I'm just saying people, let's cut radman some slack, he came on here to get some help which i believe many people have given him, but to question who he says he is and what he says he does....well we could start a jerry springer topic board...i'm sure it'd be good for a laugh or two.
radman-
i'd follow the diet as best as you can, like many have said, there really is no point in getting and feeling sick if you can prevent it~
I'm just saying people, let's cut radman some slack, he came on here to get some help which i believe many people have given him, but to question who he says he is and what he says he does....well we could start a jerry springer topic board...i'm sure it'd be good for a laugh or two.
radman-
i'd follow the diet as best as you can, like many have said, there really is no point in getting and feeling sick if you can prevent it~
Thank you, Mahee,
My first thought also was that radman was putting it in layman's terms as not everyone understands the individual names of doctors.
That being said, I hope radman continues to come to us to learn about this disease, not only to help himself, but to help untold others who in the future will learn about celiac from him due to the knowledge he receives from us.
Karen
Man so much negativity.
I said I was a cancer doctor because I am a cancer doctor, not that anyone should really give a rip. To state it more precisely, I am a radiation oncologist, if you are a stickler for professional monikers. Sorry if that is a problem for some of you. I came here to get some help with my celiac not get a hatchet job by some people with "issues".
Well gotta say, folks, there seems to be just to much animosity around here.
I said I was a cancer doctor because I am a cancer doctor, not that anyone should really give a rip. To state it more precisely, I am a radiation oncologist, if you are a stickler for professional monikers. Sorry if that is a problem for some of you. I came here to get some help with my celiac not get a hatchet job by some people with "issues".
Well gotta say, folks, there seems to be just to much animosity around here.
I really do wish you would re-consider radman. Just read around, and learn. You'll see we are really a great bunch of people who lean on each other, love helping others, including those who are new and are trying to learn. Please do not let the posts of few deprive you of the wealth of information and encouragement you would get from all the rest of this wonderful community. (Honestly, we really can be a wacko bunch! but if you read previous threads, you will figure that out! 
)
Karen
deprive you of the wealth of information and encouragement you would get from all the rest of this wonderful community. (Honestly, we really can be a wacko bunch! but if you read previous threads, you will figure that out! )Karen
QUOTE(Canadian Karen @ Mar 26 2006, 03:03 PM)
Thank you, Mahee,
My first thought also was that radman was putting it in layman's terms as not everyone understands the individual names of doctors.
That being said, I hope radman continues to come to us to learn about this disease, not only to help himself, but to help untold others who in the future will learn about celiac from him due to the knowledge he receives from us.
Karen
My first thought also was that radman was putting it in layman's terms as not everyone understands the individual names of doctors.
That being said, I hope radman continues to come to us to learn about this disease, not only to help himself, but to help untold others who in the future will learn about celiac from him due to the knowledge he receives from us.
Karen
Agreed, I also hope he stays and learns and spreads the word. We need for all of us to be as vocal as possible and it certainly is not going to make this person stay and learn if people attack him directly. We all had a long learning process with this especially with his question. I know I found it hard to believe I even had to check shampoos and such and regularly have 'duh' moments still with things like glues and paints. He will learn just like the rest of us did, as long as we don't get too hostile. After all he didn't misdiagnose us.
Radman, if I haven't said it yet welcome to the boards, bet your regretting telling us your a doctor
but please do stay around.
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