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icm

How Bad Is Cheating On The Gluten Free Diet Periodically

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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.


"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

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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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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.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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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.


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

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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. ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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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. .

It may have something to do with our current testing procedures


Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 

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

I'm new to this, and was wondering about the 20ppm... Is that per day? Week? Month? Do you know the frequency of the "safe" consumption?

Thanks.

Nicole


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I'm new to this, and was wondering about the 20ppm... Is that per day? Week? Month?

None of the above. Ppm is parts per million. It is like a percentage, but much smaller. 20 ppm is 0.002%.

Of course, to consistently test below 20 ppm, the manufacturer must aim much lower, due to batch variations, and test accuracy (do not confuse accuracy with sensitivity).


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I'm new to this, and was wondering about the 20ppm... Is that per day? Week? Month? Do you know the frequency of the "safe" consumption?

Thanks.

Nicole

Here is some good information:

http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm

A 2007 study led by Dr. Alessio Fasano, who heads the University of Maryland's Center for Celiac Research, found that people who consumed 50 milligrams of gluten each day had renewed villous atrophy after 90 days, while those consuming zero gluten or 10 milligrams of gluten each day did not.

Dr. Fasano and his colleagues say that many or most people with celiac disease can handle up to 10 milligrams of gluten — the equivalent of 1/8th of a teaspoon of flour, or 1/350th of that slice of bread — in their diets each day without experiencing adverse effects. The study frequently is cited as evidence that celiacs can handle "gluten-free"-labeled foods with up to 20 parts per million of gluten in them.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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The link Lisa provided explains very well how even a small amount is damaging the intestines:

"You certainly can get very sick — and also damage your intestines — by eating even a tiny amount of conventional bread or other gluten-containing substance.

For example, one study showed that consuming just 1/5th of a slice of regular bread (about 625 milligrams of gluten) one time is enough to cause nasty symptoms, including severe diarrhea and vomiting, and increase villous atrophy in your small intestine.

That makes a delicious-looking gluten-filled cookie a bit less appealing.

Of course, many of us have experienced symptoms from way less gluten than that. Two older studies found symptoms coupled with increasing intestinal inflammation (but not necessarily villous atrophy) in people who consumed just 24 to 30 milligrams of gluten — about 1/145th of a slice of conventional bread (otherwise known as a crumb)."

and by now you are thinking, okay, I got it so far, but

how much gluten is 20 ppm?

http://www.glutenfreedietitian.com/newsletter/how-much-gluten-is-20-parts-per-million/

and

http://celiacdisease.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=celiacdisease&cdn=health&tm=56&f=21&su=p284.13.342.ip_&tt=12&bt=1&bts=1&zu=http%3A//somvweb.som.umaryland.edu/absolutenm/templates/%3Fa%3D1617%26z%3D5


"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

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How is it safe for us to eat 1/8 a tsp of flour???! That is an amount you can see...but cross contamination which is not visible because it's so small, makes us sick. I don't think that eating an eighth a tsp of flour is safe for any celiac...just my opinion!

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How is it safe for us to eat 1/8 a tsp of flour???! That is an amount you can see...but cross contamination which is not visible because it's so small, makes us sick. I don't think that eating an eighth a tsp of flour is safe for any celiac...just my opinion!

Victoria,

It's a visual amount, so we can understand better what 20ppm looks like.

Even though you eat as gluten free as possible, you probably consume close to that amount of gluten due to cross contamination in processed gluten free food and other exposures. Most people with Celiac are not even aware of it, or react to it. There are some people who are more sensitive. Fortunately, I'm not one of them. :)

Eating 100% gluten free is a total improbability. :rolleyes:


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Eating 100% gluten free is a total improbability. :rolleyes:

That's the truth. :)

We can only do our best.

As celiacs, we avoid it religiously and

we should not ingest it purposefully.

It's a gluten-filled world. We have to be wise about CC. But we're going to get "hit" anyway.

A very wise man I know said:

"The planet, Earth is a shared facility"

:)


"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

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"The planet, Earth is a shared facility"

This is wonderful, IH! Everyone could benefit from a reminder – extending beyond just gluten and Celiac. :) Thank you for sharing!


Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 

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This is wonderful, IH! Everyone could benefit from a reminder – extending beyond just gluten and Celiac. :) Thank you for sharing!

Oh hon, I always give props to those who deserve it. This is not my idea.

That wisdom came from someone who has been an invaluable friend to me since I came on c.com....Peter. (Psawyer) :)


"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

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Great links! Thanks. So it's about 20ppm per day (approx) that we need to stay below. And less is better of course.

My biggest newbie challenge right now is trying to remember not to finish off the kids' last bite or wipe down everything my kids' food touched before getting out my own... this is going to force me to be a better housekeeper! LOL


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Great links! Thanks. So it's about 20ppm per day (approx) that we need to stay below. And less is better of course.

You are still missing the meaning of "ppm." The middle letter is an abbreviation of "per." Parts per million. So you don't do it per hour, per week, per year, etc.--the "per" is already there. 20 ppm is 0.002% of whatever you eat, whenever you eat it.

You can consume amounts appropriate to your caloric intake which contain less than 20 ppm (0.002%) gluten every day--several times per day--if the total intake of such foods remains appropriate to your caloric requirements.

Less is better, but finding a product that will make a label declaration (and thus risk a legal liability) less than 20 ppm is unlikely. A few companies use tests sensitive to levels as low as 5 ppm or even 3 ppm, but for legal reasons they will not make a claim on the label to that effect.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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you can "overdose" on foods that are 20 ppm if you eat too many/much of them and end up with a gluten reaction.

some super sensitive celiacs cannot handle one serving of a food that is labelled 20 ppm. others can handle several. others can handle quite a lot.


gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011

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Here's a good reference of what 50 mg of gluten looks like:

577832_370935859610336_1059067681_n.jpg

Photo was taken from the University of Chicago Celiac Disease Center's Facebook page.

http://www.facebook.com/CureCeliac


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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Good visual, Sylvia. :)


"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

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Good visual, Sylvia. :)

It's really hard for me to visualize things like that...actually scary to see what a small amount of gluten it is.

This was posted on their FB page this morning:

"Every person with celiac disease has a different threshold for how much gluten can be tolerated before activating the disease


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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Hmmm..I'm still confused. I got sick for a week after drinking out of someone else's water bottle but I don't react to gluten free processed foods. if something I can't see ( cc on a water bottle) can make me sick, how come 1/8 a tsp of flour, which you would be able to see, is supposed to be something I can handle? I'm sorry, I'm honestly confused. :P

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Hi Victoria,

Don't assume your are just like everybody else. When they say 20 ppm is safe for most celiacs, that is not the same as all saying all celiacs. You could react to smaller amounts. Many people do. The study doesn't prove the lowest amount a specific person can react too. Some of us have no symptoms from eating gluten at all (silent celiac) and others react to very small amounts. I think reactions are more sensitive if your gut is already irritated/reacting to something. Some have additional food intolerances that can cause irritation and may keep our guts in a constant state of inflammation. Ready to react to the slightest trace of cc. Lot's of IMHO'ing going on in this paragraph tho.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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So in reality, looking at the aforementioned study anyways, it seems that 'only occasional ' exposures were never taken into account. This was everyday exposure over 90 days.

Surely a piece of cake (ie 1-2g) every day over 90 days would be MUCH worse (or would it really be??) than just 50mg gluten per day.

The big question NOW is: Would a one-off exposure to a slice of bread with 5g gluten on round figures just once at the beginning of the 90 day period result in as much damage as 1/90-100th of that (ie 50mg over 90-100 days) every day?

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Actually, I'm not sure that is the " big question". I think the big question is why you are quibbling over the amount you can cheat with?


 

 

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