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How Strict Do We Need To Be?


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#1 radman

 
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Posted 26 March 2006 - 05:54 AM

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?
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#2 VydorScope

 
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Posted 26 March 2006 - 06:15 AM

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. :D 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.
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#3 Guest_nini_*

 
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Posted 26 March 2006 - 06:23 AM

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.
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#4 Nancym

 
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Posted 26 March 2006 - 06:29 AM

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.
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#5 gfp

 
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Posted 26 March 2006 - 06:56 AM

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 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.

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.hastypa...read.php?t=2132

specifically
http://jnnp.bmjjourn...t/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.
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#6 radman

 
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Posted 26 March 2006 - 06:59 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.
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#7 ianm

 
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Posted 26 March 2006 - 07:05 AM

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.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#8 radman

 
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Posted 26 March 2006 - 07:06 AM

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.
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#9 Guest_nini_*

 
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Posted 26 March 2006 - 07:15 AM

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.
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#10 plantime

 
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Posted 26 March 2006 - 07:22 AM

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.
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#11 nettiebeads

 
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Posted 26 March 2006 - 07:22 AM

[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
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#12 radman

 
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Posted 26 March 2006 - 07:37 AM

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 :D ), 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!
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#13 Guest_nini_*

 
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Posted 26 March 2006 - 08:01 AM

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!
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#14 gfp

 
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Posted 26 March 2006 - 08:03 AM

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 :P

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?
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#15 ianm

 
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Posted 26 March 2006 - 08:15 AM

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.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.




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