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How Bad Is Cheating On The Gluten Free Diet Periodically


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58 replies to this topic

#16 IrishHeart

 
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Posted 28 June 2012 - 03:06 PM

Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#17 melikamaui

 
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Posted 28 June 2012 - 03:30 PM

Something else those ignorant doctors are discounting: the fact that every time you even accidentally ingest gluten, you are triggerring an auto-immune response. Continue doing so and one of those times you will trigger the start of another auto-immune disease, one that can NOT be controlled completely with diet. So, if you want to develop Multiple Sclerosis, Sjorens Syndrome, Lupus, Type 1 Diabetes, Hashimotos....the list goes on and on.....then by all means, indulge. I know it is difficult to get your head around the fact of a lifelong diet in the beginning. It IS an inconvenience and it sucks. But that is the straw we drew. People with cancer or any of the other horrible diseases one can develop don't get to choose how their life will change either. They have to accept it. And you do too.



I totally agree with MitziG. I was diagnosed with celiac disease at 38 years old, long enough for my celiac disease to trigger the start of another auto-immune disorder that I was just diagnosed with, Meniere's disease. For me, having celiac disease is a walk in a park on a sunny day compared to my Meniere's. I wish my celiac disease had been diagnosed MUCH earlier, if only to save me from developing another auto-immune disorder.

Cheating is NOT worth it.
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#18 benXX

 
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Posted 28 June 2012 - 09:52 PM

Welcome to the site! You sure picked a popular question for this thread! :) I'm sure you got the idea by now that people are against the whole cheat a little thinking of your doctors. There is a reason for that, or maybe quite a few actually.

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten, while before we didn't feel that ill when consuming gluten regularly. Is feeling ill from being glutened a measure for the damage done?

It took years for most celiacs to get diagnosed, so it feels like it took years to get to a point that the villi were destroyed enough to be diagnosed.
Also, when already gluten free, to be diagnosed one must undergo a severe gluten challenge for many weeks and still risks a false negative.
I guess I'm not the only one wondering how much damage an occasional glutening really does.
Not that I plan or want to cheat, I'm very happy without gluten, but just wonder. Would be nice to find a scientific, non-emotional answer to this question.
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#19 IrishHeart

 
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Posted 29 June 2012 - 06:09 AM

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened.


Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

here is just one:
http://www.celiac.co...gram/Page1.html

"In a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets.

How can I reduce the chances of developing refractory sprue?

Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue."

The patients in these studies insist they adhere to the diet, but does this mean then that they are cheating occassionally or more likely, being glutened accidentally? --something ALL of us are likely to have happen many times throughout our lives.

Our point is, it's bad enough we get trace glutened all the time (despite our best efforts) but it is unwise to ADD to the problem by purposefully ingesting it.

That is just reckless, IMHO.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 Adalaide

 
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Posted 29 June 2012 - 09:02 AM

Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.



I used to be a smoker too. I was lucky to be able to share some insight at a recent meeting focused on dealing with having a family member who is an addict. (of any sort) I remember pointing out that at the time that I was smoking, nothing else mattered. I knew it was bad for me, I knew I might die, I knew all the horrid things that could happen before I died. What mattered was when the next time was I could light up.

Sound stupid? It isn't any more stupid than having celiac and eating gluten. Both are bad for you, can kill you and will make you horribly sick before you die.
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#21 cyberprof

 
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Posted 29 June 2012 - 09:35 AM

Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.


Yes, scare tactics aren't too effective, especially on the young. I heard it said that telling young people that they will die if they drive drunk doesn't work, because they think it won't happen to them and they feel invincible. Instead tell them that they could end up in a wheelchair like Christopher Reeve and unable to hang out with their friends. That has more of an impact.

But it applies to a lot of things. I took birth control pills as a young, relatively healthy woman. The doc and the prescription insert said that users could develop a whole group of side effects, including kidney and liver tumors. Did I think it would happen to me? NO. Did it? YES. (Benign at present, thankfully.) Would I go back and change my decision now? Maybe, but I was able to not worry about unplanned pregnancy and have two very well-planned, healthy babies exactly when I wanted them and not when I didn't. My friends who were not on BCPs were unexpectedly parents when they didn't want to be.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#22 benXX

 
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Posted 29 June 2012 - 10:06 AM

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten,

Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#23 kareng

 
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Posted 29 June 2012 - 10:14 AM

This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.


I gave this, impersonal, non-emotional & credible link at the beginning. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.curecelia...6_Treatment.pdf

and another:

": Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis."


http://www.celiacdis...nts/A02-FAQ.htm
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#24 benXX

 
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Posted 29 June 2012 - 10:43 AM

I gave this, impersonal, non-emotional link at the begining. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.curecelia...6_Treatment.pdf

I've seen this document and although it is coming from a very reliable source, there is no scientific reference to their statement that it "can" damage the intestine.
Has nobody found any study yet about the effects of occasional glutening?
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#25 psawyer

 
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Posted 29 June 2012 - 11:56 AM

Has nobody found any study yet about the effects of occasional glutening?

I highly doubt one exists. It would be very difficult to do in a meaningful way. You would need a significant number of people with celiac disease, over a long period of time, with a "control" segment who are 100% successful at keeping totally gluten-free, for comparison. Given reality, I don't know how you could verify the control group's compliance.
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Peter
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Type 1 (autoimmune) diabetes diagnosed in March 1986
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#26 IrishHeart

 
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Posted 29 June 2012 - 12:21 PM

This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.



No, it isn't and I was not emotional at all.

How is my answer "emotional"?? :blink: It's a valid question and I just gave you a valid answer. As best as researchers can determine, there is still damage done when a celiac takes in gluten.

How can any study be exact?
You would have to have people in the study group being 100% compliant --and how is that going to happen?

The term "occasionally glutening" to me means "it happens from time to time". Does not matter whether it is accidental or on purpose, it still initiates the autoimmune response.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#27 kareng

 
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Posted 29 June 2012 - 12:45 PM

I've seen this document and although it is coming from a very reliable source, there is no scientific reference to their statement that it "can" damage the intestine.
Has nobody found any study yet about the effects of occasional glutening?



These people are the " experts". They say a small amount starts an immune response. If you want to understand the immune system better, in order to understand thier statements, you can get books from the library. Like a basic high school or college Anatomy and Physiology book.

If you are questioning the validity of what the Celiac Centers, who study the disease, are saying, you could email them and ask. On thier sites, they are providing the basic info that's easy to understand. They are not " citing" any studies as most people will not want to or be able to understand them. They may be able to provide you with links or info about studies that would be a bit complicated to the average info seeker. I know the U of Chicago is good about answering email.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
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“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#28 tarnalberry

 
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Posted 29 June 2012 - 08:49 PM

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten, while before we didn't feel that ill when consuming gluten regularly. Is feeling ill from being glutened a measure for the damage done?

It took years for most celiacs to get diagnosed, so it feels like it took years to get to a point that the villi were destroyed enough to be diagnosed.
Also, when already gluten free, to be diagnosed one must undergo a severe gluten challenge for many weeks and still risks a false negative.
I guess I'm not the only one wondering how much damage an occasional glutening really does.
Not that I plan or want to cheat, I'm very happy without gluten, but just wonder. Would be nice to find a scientific, non-emotional answer to this question.


A study would be fairly useless. Because every study on the disease shows a wide variation in the degree of damage measured. Note, however, that measurable damage is a combination of amount of damage done AND amount of repair done. Some people don't have a super strong damage reaction, but are otherwise healthy enough to repair well, so they show little measurable damage. Some people have a strong damage reaction, but do not have a strong repair system, and show a lot of measurable damage. But the actual damage that occurs, before taking into account repair, is important too, as it is setting off other immune system activity that ISN'T measured (or, in some cases, measurable; there is a ridiculous amount that is currently being learned about the immune system).

What it would tell you is that gluten does damage. But we already know that. It might tell you that you need a dosage of X per day, or week, or month, or year to see a level Y of destruction to the intestinal villi. But we all know that is not a good indication of how *bad* things are in sum for the body as a whole. And those sorts of things, the body system as a whole, are ridiculously hard to measure because the number of variables introduced over the time period that would be required make the data un-analyzable.
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
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#29 benXX

 
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Posted 30 June 2012 - 06:32 AM

Many doctors I've seen in my time seem to think it's ok for celiacs to cheat on the gluten free diet. Some say once every few months and others say once every year or couple of years.
How long would it take to heal? I've heard it's around 3-4 weeks from a single 5 gram dose of gluten.

This was the initial issue of this thread.
There is 100% consensus that it is not wise to knowingly gluten yourself.

As my body doesn't know if I'm glutened on purpose or by accident, I tried to extend the issue to when one is occasionally glutened accidentally.

My interpretation of the reactions in this thread is that: doctors are ignorant, death and irreversible villi destruction may occur and the person wondering about the extend of damage must be so ignorant he needs to buy a basic book on anatomy. And although denied, it all feels more emotional than factual into perspective to me.

To be diagnosed when already on a gluten free diet, a long and intensive gluten challenge is required. So apparently incidental glutening does not carry far enough to be diagnosed. Of course this does not mean it is ok to be careless, it only gives some comparison.

For those of us diagnosed celiac, staying gluten free is a way to heal. It's not a belief or a religion, we are not part of a cult.
There is nothing wrong or ignorant about wondering HOW MUCH you are set back by a single glutening.
  • 0
Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#30 Lisa

 
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Posted 30 June 2012 - 07:05 AM

There is nothing wrong or ignorant about wondering HOW MUCH you are set back by a single glutening.

Of course not! It's a valid question. And it's one that I have thought about as well. Although, we all know that we should avoid all gluten, but yet we must consume gluten for two to three months in order to be tested accurately.

But, I would assume that damage would vary greatly from person to person, current state of health and the amount or duration of gluten consumed.

Current studies indicate that most people with Celiac can handle 20ppm. Some are more sensitive.

And as Peter said, there are most likely no studies to determine the level of damage from an intentional/accidental exposure to gluten.

I don't cheat, but would give it some thought at a very expensive French restaurant on a rare occassion :rolleyes: , rather than a double cheese burger at McD's....but that wasn't your question. ;)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien




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