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Random Guy

Is A Tiny Amount As Evil As A Pizza?

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The hardest thing for me to grasp is how if only a crumb per month is like not being on the diet at all, then what's the point?  Almost everyone here, as careful as they can possibly be, still gets glutened on occasion.  I know I got glutened yesterday, but I cannot figure out where the heck from.  If that only happens once in a month, then it would seem I just wasted all that time trying to be careful for nothing.

Am I missing something??

<{POST_SNAPBACK}>

Good point. I've been wondering the very same thing.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Good point. I've been wondering the very same thing.

<{POST_SNAPBACK}>

Think of it this way; take the example of two steps forward, one step back. Ideally we are on forward march toward better health and freedom for the multiple symptoms of a disease. An accidental 'glutening' is a step backward but you certainly do not lose all that you have gained. The more forward progress you make the furtherahead you are. Logically, you wouldn't stop moving forward because you may ocassionaly be set back a step.

I know from my own experience that gluten in even the smallest amounts does significant damage to the body. I certainly do not mean to minimize that fact. But setbacks, as unwelcome as they are, cannot ever be a justification for inviting the serious effects of ignoring a gluten free diet.

Even naming a couple of the risks should be convincing. Undiagnosed or untreated celiacs disease can lead to intestinal T-cell lymphoma - a very deadly form of cancer. Or celiacs and those with non-celiac gluten sensitivity are at risk for serious - even disabling neurological diseases.

As Fox News would say - you decide. Claire

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All I can say is that my mom is incredibly careful, but on several occasions she has totally unknowingly gotten some small amount of glutin and she got violently, horribly sick (intense vomiting which left her weak and sick feeling for days). She has mostly gotten sick when eating out, and in that situation you just can't know what the exposure is, or how much.....but obviously, a small amount somewhere. She is even affected by handling flour and breathing minute amounts of it in the air.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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some of this information you are getting is unclear.

i went to the celiac patient education day at columbia u's celiac center to find out the answer to questions just like this one. one of the talks as "how much gluten is toxic" (carol semrad, md, u of chicago)

cited a study "dose-dependent effect of gliadin" where patients were given various doses of gliadin (what's in gluten) over 90 days. they found basically that the "safe" level of gluten you could have per day is less than 1/8 tsp of flour. "safe" meaning no biopsy-detected damage or symptoms. so not much.

as for "cheating," the studies show that the bowel regenerates itself every 5 to 7 days. so it should take about a week for the inflammation to calm after being exposed to gluten. and the amount of inflammation is more or less depending on the amount of gluten (crumb vs. pizza).

i also recall reading a study (which i'm sure you can find online) that showed that after 5 years of eating 100% gluten-free, celiacs had no more risk than "normal" people of the stomach cancers, but that celiacs eating gluten had greatly increased risks and celiacs eating somewhat gluten free ("cheaters") had a higher than "normal" risk but not as bad as the full-blown. (so, again, crumbs not as bad as pizzas.)

hope this is helpful. i want to stress though that you should try to find these sorts of studies and ask doctors-- although a lot of patients will give advice on these boards, it's not always correct.

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some of this information you are getting is unclear.

i went to the celiac patient education day at columbia u's celiac center to find out the answer to questions just like this one.  one of the talks as "how much gluten is toxic" (carol semrad, md, u of chicago)

cited a study "dose-dependent effect of gliadin" where patients were given various doses of gliadin (what's in gluten) over 90 days.  they found basically that the "safe" level of gluten you could have per day is less than 1/8 tsp of flour.  "safe" meaning no biopsy-detected damage or symptoms.  so not much.

as for "cheating," the studies show that the bowel regenerates itself every 5 to 7 days.  so it should take about a week for the inflammation to calm after being exposed to gluten.  and the amount of inflammation is more or less depending on the amount of gluten (crumb vs. pizza).

i also recall reading a study (which i'm sure you can find online) that showed that after 5 years of eating 100% gluten-free, celiacs had no more risk than "normal" people of the stomach cancers, but that celiacs eating gluten had greatly increased risks and celiacs eating somewhat gluten free ("cheaters") had a higher than "normal" risk but not as bad as the full-blown.  (so, again, crumbs not as bad as pizzas.)

hope this is helpful.  i want to stress though that you should try to find these sorts of studies and ask doctors-- although a lot of patients will give advice on these boards, it's not always correct.

<{POST_SNAPBACK}>

But here, you're just talking about villi damage, right? I think the damage for those who experience a peptide problem are not being looked into. My son becomes practically catatonic when he is glutened. Drooling, non-verbal... I mean, he'll talk to some degree, but good Lord, you never saw a reaction like that! So, for a kid with that kind of reaction- where are the studies? How much is too much then? I know he had two bites of a rice crispy made with gluten crispies the last time he was glutened. That was three years ago. He had a horrible reaction to the gluten. How do I measure that? His catatonia lasted less than a week, but it was terrible for him. That kind of reaction is the main cause of his developmental delays. Being zoned out for the first three years of life can do a number on a human being. So, I think it's great drs are looking into celiac disease, but they can't ignore the peptide reaction many celiacs have. It's particularly important to undx children. The long term effects are devastating and costly to school systems and parents. The study you referred to pointed to one symptom of celiac disease...ok, so it's relevant to all Celiacs, but still doesn't tell the whole story. How much gluten does it take to cause joint pain? For how long? How much gluten does it take to cause relentless diahrea that keeps you out of work?? How long does it last? How much gluten does it take to cause ..... *fill in blank with one of 200 symptoms of celiac disease.


I believe in God.

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But here, you're just talking about villi damage, right?  I think the damage for those who experience a peptide problem are not being looked into.  My son becomes practically catatonic when he is glutened.  Drooling, non-verbal... I mean, he'll talk to some degree, but good Lord, you never saw a reaction like that!  So, for a kid with that kind of reaction- where are the studies?  How much is too much then?  I know he had two bites of a rice crispy made with gluten crispies the last time he was glutened.  That was three years ago.  He had a horrible reaction to the gluten.  How do I measure that?  His catatonia lasted less than a week, but it was terrible for him.  That kind of reaction is the main cause of his developmental delays.  Being zoned out for the first three years of life can do a number on a human being.  So, I think it's great drs are looking into celiac disease, but they can't ignore the peptide reaction many celiacs have.  It's particularly important to undx children.  The long term effects are devastating and costly to school systems and parents.  The study you referred to pointed to one symptom of celiac disease...ok, so it's relevant to all Celiacs, but still doesn't tell the whole story.  How much gluten does it take to cause joint pain?  For how long?  How much gluten does it take to cause relentless diahrea that keeps you out of work??  How long does it last?  How much gluten does it take to cause ..... *fill in blank with one of 200 symptoms of celiac disease.

<{POST_SNAPBACK}>

My problem is neurological so gluten is like radioactivity - there is no way to see the damage. It is cumulative and one day you have a problem caused by damage done to your brain. How muchis too much. For me - any is too much. Claire

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Think of it this way; take the example of two steps forward, one step back. Ideally we are on forward march toward better health and freedom for the multiple symptoms of a disease. An accidental 'glutening' is a step backward but you certainly do not lose all that you have gained. The more forward progress you make the furtherahead you are. Logically, you wouldn't stop moving forward because you may ocassionaly be set back a step.

I think this is the way it should be explained to all newcomers to the board. We are freaked out enough as it is, with the new lifestyle change and to keep hearing things "Not even a crumb ever! It's like not being on the diet at all!" is very overwhelming and I'm sure many people get a defeatist attitude about it. The explanation above is waaay more comforting and suitable to real life, because in real life people do make mistakes and people need to know that it's okay, to learn from that mistake and to try not to repeat it.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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If you don't have a true diagnosis in hand, it's easy to be somewhat in denial of the siituation, or to think that perhaps a little won't matter, or at worst, just cause some minor upset. My major reaction most recently really knocked me out....I got suddenly dizzy as heck, almost vertigo, felt terribly nauseated, and that lasted about 5 or 6 hours. Then I felt low grade nausea for the next week. My body was definitely giving me a strong message...

The frightening thing is that if you ignore it and "live" with the discomfort, you don't know what you will be suddenly hit by at some later point. This is where it's unfortunate that doctors don't have much, if any, knowledge about celiac. They are unable to warn their patients about not taking this seriously.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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I read somewhere on here that it takes a month for your small intestine to heal from gluten damage. If it is 5 to 7 days, then having one accident per month wouldn't prevent healing from happening. That was my major concern.

All I can say is that come January, my life will be soooo much easier! I'm tired of not being able to tell if a food has gluten by the label (mfs, natural flavors). I just spent 5 days with family, and had to make some judgement calls I didn't like making at all! It's a lot easier to eat when you're the cook and make all of the decisions and preparations!

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I feel that my body can tell the difference between a tiny amount of gluten and a larger one. When I eat a fair amount of gluten accidentally -- I misread a label or make a stupid assumption about a food that seems safe etc. -- I get a variety of symptoms which plague me for a while. My face breaks out, I get sores in my mouth, I have crazy "D", my limbs hurt and I get eczema all over. If I have merely ingested a microscopic amount of gluten through a cross-contamination issue -- and it's an otherwise gluten-free meal -- I don't get any of the above symptoms but my stool gets kinda loose -- not like diarreah, but it floats, smells bad and it has this wispy "cotton ball" texture. I also have to go to the bathroom a LOT when this happens -- like five times within an hour and a half. And then I worry that my coworkers must think that I have a cocaine problem or something and am slipping off to the john every twenty minutes to do lines. It's like my body is trying to get rid of something posthaste...but not as urgently as during a full on glutenization.

Anyway, I'm not saying this to disagree with everyone above who cautions against being cavalier about small amounts of gluten. And I'm not saying that "small accidents" are to be taken lightly. But I do feel that despite the occasional small accident, my body is, overall, a lot better off than it used to be before I was diagnosed. I look better. I feel better. I sleep better and I have more energy. Overall, I think my body is giving me the "thumbs up" and I refuse to beat myself up over small accidents. I'm still learning.

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Anyway, I'm not saying this to disagree with everyone above who cautions against being cavalier about small amounts of gluten. And I'm not saying that "small accidents" are to be taken lightly. But I do feel that despite the occasional small accident, my body is, overall, a lot better off than it used to be before I was diagnosed. I look better. I feel better. I sleep better and I have more energy. Overall, I think my body is giving me the "thumbs up" and I refuse to beat myself up over small accidents. I'm still learning.

That is good your body is alot better than it used to be...however even small amounts of gluten even as frequent as once a month is proven to show damage to the effect of not following the diet. That is not something to take lightly...whether you get symptoms or not your body still gets damaged with small amounts.

Now, of course there will be more damage done with the larger amounts and some people may only get symptoms with large amounts but damage is done no matter the amount and can cause more serious issues in the future if accidents are frequent and the damage keeps occuring and not given time to heal.

Everyone has an accident at some point or another but you have to really be careful and try to minimize it as much as possible.


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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