Re: Trouble from very small amounts of gluten

[Guest guest]

Dear Esther,

You sound sad and confused, and I just want to give you a hug!

First of all, I have learned not to trust someone with respect to

celiac just because they are a MD- lots of MD's aren't that well

educated about celiac, especially those of a certain age that were

exposed to only the most rudimentary information (and often

inaccurate or incomplete information) about Celiac. So pooie on your

gentleman doctor friend.

Also, considering that buffets are often very difficult for us and

we can't have that many items from them and they do suffer from

cross contamination, I would say lunge for that fruit. The other

guests are probably too busy salivating over the chocolate truffle

cake to notice a few strawberries anyway, and I'm sure no one would

begrudge you if they understood the situation. Another good way to

attack the buffet is also (at a high volume buffet) go for it right

after they put a fresh tray down. Good way to minimize your risk.

I've had varying degrees of success with buffets- some have been

perfectly fine and others have not. In general, the plainer the food

and the more isolated it is from no-no's the better.

Depending on your personal level of sensitivity and level of healing

and age etc. different levels of gluten will give you noticable pain

in your stomach. However, this may not be the whole story. The way

my doctor puts it (who works at a celiac clinic, closely with one of

the foremost researchers in the field and has celiac herself) is

that celiac can be in " remission " if one is fully compliant with the

diet. This does not mean that you don't have it anymore, just that

your body isn't actively producing antibodies to fight off the

gluten goblins (because there aren't any in your system). However,

when you take in small amounts of gluten accidentally or knowingly,

while you may not feel the effects, it is likely that your body will

start producing the antibodies again. These antibodies are bad news.

For one thing, they've been linked to increased cancer risks. I feel

that it is quite likely that even a low gluten product or

contaminated products, especially if consumed regularly, will

activate the antibody reaction and result in making you feel bad in

the short term, with possible higher risks for things in the long

run. So... that is the risk, with low gluten items and cross

contamination, as I understand it. But, at the same time, I can

understand certain things being worth the risk, according to your

personal convictions, whether religious or the desire to be a

functioning person in our society (this one is mine- i go to

restaurants, knowing the risk, and doing the best i can to minimize

them.)

Anyway... best wishes, and take care. Try not to let this trouble

you...

>

>

> I'm troubled.

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?

> I deliberately choose to ingest very very small amounts of

> gluten for religious reasons. I take an itty bitty amount of

> reduced gluten substance once weekly for religious reasons.

> Two weeks ago I did that two days in a row. I WAS MISERABLE

> FOR DAYS. I had no other clinical signs of illness. I just had

> a relentless belly-ache and the desperate wish to rid my

> innards of whatever was making them ache so. Could it be the

> gluten that's SO SMALL it should be undetectable and harmless?

>

> Or is it all in my over-active imagination?

>

> Esther in RI

>

[Guest guest]

Dear Esther,

You sound sad and confused, and I just want to give you a hug!

First of all, I have learned not to trust someone with respect to

celiac just because they are a MD- lots of MD's aren't that well

educated about celiac, especially those of a certain age that were

exposed to only the most rudimentary information (and often

inaccurate or incomplete information) about Celiac. So pooie on your

gentleman doctor friend.

Also, considering that buffets are often very difficult for us and

we can't have that many items from them and they do suffer from

cross contamination, I would say lunge for that fruit. The other

guests are probably too busy salivating over the chocolate truffle

cake to notice a few strawberries anyway, and I'm sure no one would

begrudge you if they understood the situation. Another good way to

attack the buffet is also (at a high volume buffet) go for it right

after they put a fresh tray down. Good way to minimize your risk.

I've had varying degrees of success with buffets- some have been

perfectly fine and others have not. In general, the plainer the food

and the more isolated it is from no-no's the better.

Depending on your personal level of sensitivity and level of healing

and age etc. different levels of gluten will give you noticable pain

in your stomach. However, this may not be the whole story. The way

my doctor puts it (who works at a celiac clinic, closely with one of

the foremost researchers in the field and has celiac herself) is

that celiac can be in " remission " if one is fully compliant with the

diet. This does not mean that you don't have it anymore, just that

your body isn't actively producing antibodies to fight off the

gluten goblins (because there aren't any in your system). However,

when you take in small amounts of gluten accidentally or knowingly,

while you may not feel the effects, it is likely that your body will

start producing the antibodies again. These antibodies are bad news.

For one thing, they've been linked to increased cancer risks. I feel

that it is quite likely that even a low gluten product or

contaminated products, especially if consumed regularly, will

activate the antibody reaction and result in making you feel bad in

the short term, with possible higher risks for things in the long

run. So... that is the risk, with low gluten items and cross

contamination, as I understand it. But, at the same time, I can

understand certain things being worth the risk, according to your

personal convictions, whether religious or the desire to be a

functioning person in our society (this one is mine- i go to

restaurants, knowing the risk, and doing the best i can to minimize

them.)

Anyway... best wishes, and take care. Try not to let this trouble

you...

>

>

> I'm troubled.

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?

> I deliberately choose to ingest very very small amounts of

> gluten for religious reasons. I take an itty bitty amount of

> reduced gluten substance once weekly for religious reasons.

> Two weeks ago I did that two days in a row. I WAS MISERABLE

> FOR DAYS. I had no other clinical signs of illness. I just had

> a relentless belly-ache and the desperate wish to rid my

> innards of whatever was making them ache so. Could it be the

> gluten that's SO SMALL it should be undetectable and harmless?

>

> Or is it all in my over-active imagination?

>

> Esther in RI

>

[Guest guest]

Dear Esther,

You sound sad and confused, and I just want to give you a hug!

First of all, I have learned not to trust someone with respect to

celiac just because they are a MD- lots of MD's aren't that well

educated about celiac, especially those of a certain age that were

exposed to only the most rudimentary information (and often

inaccurate or incomplete information) about Celiac. So pooie on your

gentleman doctor friend.

Also, considering that buffets are often very difficult for us and

we can't have that many items from them and they do suffer from

cross contamination, I would say lunge for that fruit. The other

guests are probably too busy salivating over the chocolate truffle

cake to notice a few strawberries anyway, and I'm sure no one would

begrudge you if they understood the situation. Another good way to

attack the buffet is also (at a high volume buffet) go for it right

after they put a fresh tray down. Good way to minimize your risk.

I've had varying degrees of success with buffets- some have been

perfectly fine and others have not. In general, the plainer the food

and the more isolated it is from no-no's the better.

Depending on your personal level of sensitivity and level of healing

and age etc. different levels of gluten will give you noticable pain

in your stomach. However, this may not be the whole story. The way

my doctor puts it (who works at a celiac clinic, closely with one of

the foremost researchers in the field and has celiac herself) is

that celiac can be in " remission " if one is fully compliant with the

diet. This does not mean that you don't have it anymore, just that

your body isn't actively producing antibodies to fight off the

gluten goblins (because there aren't any in your system). However,

when you take in small amounts of gluten accidentally or knowingly,

while you may not feel the effects, it is likely that your body will

start producing the antibodies again. These antibodies are bad news.

For one thing, they've been linked to increased cancer risks. I feel

that it is quite likely that even a low gluten product or

contaminated products, especially if consumed regularly, will

activate the antibody reaction and result in making you feel bad in

the short term, with possible higher risks for things in the long

run. So... that is the risk, with low gluten items and cross

contamination, as I understand it. But, at the same time, I can

understand certain things being worth the risk, according to your

personal convictions, whether religious or the desire to be a

functioning person in our society (this one is mine- i go to

restaurants, knowing the risk, and doing the best i can to minimize

them.)

Anyway... best wishes, and take care. Try not to let this trouble

you...

>

>

> I'm troubled.

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?

> I deliberately choose to ingest very very small amounts of

> gluten for religious reasons. I take an itty bitty amount of

> reduced gluten substance once weekly for religious reasons.

> Two weeks ago I did that two days in a row. I WAS MISERABLE

> FOR DAYS. I had no other clinical signs of illness. I just had

> a relentless belly-ache and the desperate wish to rid my

> innards of whatever was making them ache so. Could it be the

> gluten that's SO SMALL it should be undetectable and harmless?

>

> Or is it all in my over-active imagination?

>

> Esther in RI

>

[Guest guest]

CRUMBS WILL HURT YOU!!! I had gotten glutened on a dinner my MIL fixed. She was extra careful and we couldn't figure out how I got glutened. Then the next day I went to get a spoon out of the drawer, which is the cabinet that is not designated gf, and right under the bread preparation station (FIL is real messy when making toast), and there were crumbs in the silverware drawer. That's how I got glutened. I moved the drawer across the room by the coffee pot...

Some people just aren't aware (and I guess that includes the medical community) just how little it takes. I can't get it into my FIL's head that you can't double dip after you've spread your knife on a piece of bread....I have dedicated peanut butter, butter, jam, etc.

--loriann aka Victree the Christian clown

[Guest guest]

Esther - You are not crazy, nor are you over-reacting. Too many

people on this board report reactions to minute amounts of gluten

for it to be all in your head. I've seen reference to a study which

indicated that daily ingestion of small amounts of gluten (like the

amount you would get accidentally like contamination from a dirty

pan on the stove) does indeed raise antibody levels enough to bring

you back into high risk categories for cancer etc. BUT...we all

have to live in a gluten riddled world. Occassionally glutening

doesn't seem to be a huge problem, as people manage to maintain good

antibody levels in spite of living among gluten, but if you get

glutened on a steady basis you are definitely doing yourself harm.

As for reactions, if you are reacting, you can bet your antibodies

are jumping into action. Unfortunately, no reaction does NOT mean

they AREN'T. Also, you may find that your reaction to being

glutened changes over time. Ours sure have.

And yes, I think to some degree you and the doc are both right. One

crumb all by itself may not do long term damage, but add that up

over time and you have a problem. Plus, is it really too much to

ask that we can have a meal and not get sick afterward? Geez. My

symptoms of glutening are fatigue and feeling flu-like the next

day. It's not like I can't function, but it is annoying enough that

I do all I can to avoid getting glutened. Call me crazy, but I like

to feel good.

So, next time if the thing you want at a buffet is right next to the

gluten I would ask someone to fetch you a serving from a dish that

hasn't made it to the buffet yet. It's really not too much to ask

that you be able to eat without getting sick.

Sue in Denver

>

> Is it totally in my imagination that even amounts of gluten I

cannot

> detect with my senses (such as maltodextrin in soup, flavorings

> in sauces, or crumbs that land on my food because I dine with short

> people) are bothering my belly?

>

> Am I just neuroitc and over-reacting?

>

> Or: is it really bonafide and true that small amounts of gluten can

> give me that OMG-I'VE-BEEN-WOUNDED-WITH-A-SHARP-SERRATED-KNIFE

> feeling in my belly, and the desperate need to find facilities?

>

> Am I making this all up?

>

> I swear I've been glutened by amounts so small that I cannot tell

> you where they're hiding. There's nothing quite like that

> Got-Glutened feeling.

>

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?

>

> Can we suffer the pain and irritation and total innards meltdown

> without doing " hurt " in the clinical sense? Are he and I both

> right? He would be right in the sense that no long term harm

> would be done by a single crumb, and I would be right in the sense

> that a single crumb can make me miserable?

>

[Guest guest]

I, too, always go for the fruit. But lately I discovered some of that makes me sick also. I drank plain grape juice and ran for the bathroom for 2 days. Even just grapes make me sick. Not to mention once in a while Lay's potato chips. I still eat them occasionally and then regret that action about 8 hours later. Such is life as a Celiac. Shirley in San Diegoseamaiden399 wrote: Dear Esther,You sound sad and confused, and I just want to give you a hug! First of all, I have learned not to trust someone with respect to celiac just because they are a MD- lots of MD's aren't that well educated about celiac, especially those of a certain age that were exposed to only the most rudimentary information (and often inaccurate or incomplete information) about Celiac. So

pooie on your gentleman doctor friend.Also, considering that buffets are often very difficult for us and we can't have that many items from them and they do suffer from cross contamination, I would say lunge for that fruit. The other guests are probably too busy salivating over the chocolate truffle cake to notice a few strawberries anyway, and I'm sure no one would begrudge you if they understood the situation. Another good way to attack the buffet is also (at a high volume buffet) go for it right after they put a fresh tray down. Good way to minimize your risk. I've had varying degrees of success with buffets- some have been perfectly fine and others have not. In general, the plainer the food and the more isolated it is from no-no's the better.Depending on your personal level of sensitivity and level of healing and age etc. different levels of gluten will give you noticable pain in your stomach. However,

this may not be the whole story. The way my doctor puts it (who works at a celiac clinic, closely with one of the foremost researchers in the field and has celiac herself) is that celiac can be in "remission" if one is fully compliant with the diet. This does not mean that you don't have it anymore, just that your body isn't actively producing antibodies to fight off the gluten goblins (because there aren't any in your system). However, when you take in small amounts of gluten accidentally or knowingly, while you may not feel the effects, it is likely that your body will start producing the antibodies again. These antibodies are bad news. For one thing, they've been linked to increased cancer risks. I feel that it is quite likely that even a low gluten product or contaminated products, especially if consumed regularly, will activate the antibody reaction and result in making you feel bad in the short term, with

possible higher risks for things in the long run. So... that is the risk, with low gluten items and cross contamination, as I understand it. But, at the same time, I can understand certain things being worth the risk, according to your personal convictions, whether religious or the desire to be a functioning person in our society (this one is mine- i go to restaurants, knowing the risk, and doing the best i can to minimize them.)Anyway... best wishes, and take care. Try not to let this trouble you... >> > I'm troubled. > But yet this MD was saying this is ludicrous - a tiny crumb can't> hurt any one.> > So... Can crumbs defeat us or not?> I deliberately choose to ingest very very small amounts of> gluten for religious reasons. I take an itty bitty amount of> reduced gluten substance

once weekly for religious reasons.> Two weeks ago I did that two days in a row. I WAS MISERABLE> FOR DAYS. I had no other clinical signs of illness. I just had> a relentless belly-ache and the desperate wish to rid my> innards of whatever was making them ache so. Could it be the> gluten that's SO SMALL it should be undetectable and harmless?> > Or is it all in my over-active imagination?> > Esther in RI>

[Guest guest]

I, too, always go for the fruit. But lately I discovered some of that makes me sick also. I drank plain grape juice and ran for the bathroom for 2 days. Even just grapes make me sick. Not to mention once in a while Lay's potato chips. I still eat them occasionally and then regret that action about 8 hours later. Such is life as a Celiac. Shirley in San Diegoseamaiden399 wrote: Dear Esther,You sound sad and confused, and I just want to give you a hug! First of all, I have learned not to trust someone with respect to celiac just because they are a MD- lots of MD's aren't that well educated about celiac, especially those of a certain age that were exposed to only the most rudimentary information (and often inaccurate or incomplete information) about Celiac. So

pooie on your gentleman doctor friend.Also, considering that buffets are often very difficult for us and we can't have that many items from them and they do suffer from cross contamination, I would say lunge for that fruit. The other guests are probably too busy salivating over the chocolate truffle cake to notice a few strawberries anyway, and I'm sure no one would begrudge you if they understood the situation. Another good way to attack the buffet is also (at a high volume buffet) go for it right after they put a fresh tray down. Good way to minimize your risk. I've had varying degrees of success with buffets- some have been perfectly fine and others have not. In general, the plainer the food and the more isolated it is from no-no's the better.Depending on your personal level of sensitivity and level of healing and age etc. different levels of gluten will give you noticable pain in your stomach. However,

this may not be the whole story. The way my doctor puts it (who works at a celiac clinic, closely with one of the foremost researchers in the field and has celiac herself) is that celiac can be in "remission" if one is fully compliant with the diet. This does not mean that you don't have it anymore, just that your body isn't actively producing antibodies to fight off the gluten goblins (because there aren't any in your system). However, when you take in small amounts of gluten accidentally or knowingly, while you may not feel the effects, it is likely that your body will start producing the antibodies again. These antibodies are bad news. For one thing, they've been linked to increased cancer risks. I feel that it is quite likely that even a low gluten product or contaminated products, especially if consumed regularly, will activate the antibody reaction and result in making you feel bad in the short term, with

possible higher risks for things in the long run. So... that is the risk, with low gluten items and cross contamination, as I understand it. But, at the same time, I can understand certain things being worth the risk, according to your personal convictions, whether religious or the desire to be a functioning person in our society (this one is mine- i go to restaurants, knowing the risk, and doing the best i can to minimize them.)Anyway... best wishes, and take care. Try not to let this trouble you... >> > I'm troubled. > But yet this MD was saying this is ludicrous - a tiny crumb can't> hurt any one.> > So... Can crumbs defeat us or not?> I deliberately choose to ingest very very small amounts of> gluten for religious reasons. I take an itty bitty amount of> reduced gluten substance

once weekly for religious reasons.> Two weeks ago I did that two days in a row. I WAS MISERABLE> FOR DAYS. I had no other clinical signs of illness. I just had> a relentless belly-ache and the desperate wish to rid my> innards of whatever was making them ache so. Could it be the> gluten that's SO SMALL it should be undetectable and harmless?> > Or is it all in my over-active imagination?> > Esther in RI>

[Guest guest]

The MD who said that one crumb can't hurt anyone isn't a Celiac. Let me tell you, one crumb, flour dust, or just placing a floured item to my tounge had me sick within 20 minutes. I don't need anyone to tell me that crumb, dust, or anything else with gluten isn't giving me a reaction... it's fast... it's bad... and it lasts at least 3 weeks.

Sure, everyone is different... Reactions are different...

While I really like my MD, and he was the one that found out that I had CD and HD, he really didn't know about CD and started to really read up on it after. He was surprised (as well as another doctor who was in the room at the time) that I even had a reaction to my shampoo (HD).

Just because the have MD after their name doesn't mean they have all the answers... How could they?

-- Carol M Heppnerwww.carolheppner.comScrapbooking Techniques: INKING (Sterling/Chapelle) 2006Making Memory Jewelry (Sterling/Lark) 2006

[Guest guest]

The MD who said that one crumb can't hurt anyone isn't a Celiac. Let me tell you, one crumb, flour dust, or just placing a floured item to my tounge had me sick within 20 minutes. I don't need anyone to tell me that crumb, dust, or anything else with gluten isn't giving me a reaction... it's fast... it's bad... and it lasts at least 3 weeks.

Sure, everyone is different... Reactions are different...

While I really like my MD, and he was the one that found out that I had CD and HD, he really didn't know about CD and started to really read up on it after. He was surprised (as well as another doctor who was in the room at the time) that I even had a reaction to my shampoo (HD).

Just because the have MD after their name doesn't mean they have all the answers... How could they?

-- Carol M Heppnerwww.carolheppner.comScrapbooking Techniques: INKING (Sterling/Chapelle) 2006Making Memory Jewelry (Sterling/Lark) 2006

[Guest guest]

The MD who said that one crumb can't hurt anyone isn't a Celiac. Let me tell you, one crumb, flour dust, or just placing a floured item to my tounge had me sick within 20 minutes. I don't need anyone to tell me that crumb, dust, or anything else with gluten isn't giving me a reaction... it's fast... it's bad... and it lasts at least 3 weeks.

Sure, everyone is different... Reactions are different...

While I really like my MD, and he was the one that found out that I had CD and HD, he really didn't know about CD and started to really read up on it after. He was surprised (as well as another doctor who was in the room at the time) that I even had a reaction to my shampoo (HD).

Just because the have MD after their name doesn't mean they have all the answers... How could they?

-- Carol M Heppnerwww.carolheppner.comScrapbooking Techniques: INKING (Sterling/Chapelle) 2006Making Memory Jewelry (Sterling/Lark) 2006

[Guest guest]

At least one study found damage via biopsy from someone that at 1 mg/day.

Another showed 100 mg once a month was enough to sustain damage via biopsy

(and both elevated antibody levels and kept them high enough to test).

Neither of these amounts is " big " , especially when talking about bread. But,

in your case, damage from that communion wafer is more likely to cause long

term complications than a one time crumb - constant low level exposure needs

less of an amount to cause visible damage (which means malabsorption) and

antibody increases (and TTG antibodies are what causes NH lympoma's

increased risk).

Of course, damage and symptoms are entirely different matters. Some people

have no symptoms from eating wheat bread and pizza daily (other than

osteoporosis, anemia and cancer), while others will become quite ill for

days from <1mg exposure.

Of course, that doc probably tells kids they'll outgrow CD, also. And that

alcoholics can have social drinks without any problem.

> -----Original Message-----

>

> I swear I've been glutened by amounts so small that I cannot tell

> you where they're hiding. There's nothing quite like that

> Got-Glutened feeling.

>

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?...

>

> I deliberately choose to ingest very very small amounts of

> gluten for religious reasons. I take an itty bitty amount of

> reduced gluten substance once weekly for religious reasons.

> Two weeks ago I did that two days in a row. I WAS MISERABLE

> FOR DAYS.

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

At least one study found damage via biopsy from someone that at 1 mg/day.

Another showed 100 mg once a month was enough to sustain damage via biopsy

(and both elevated antibody levels and kept them high enough to test).

Neither of these amounts is " big " , especially when talking about bread. But,

in your case, damage from that communion wafer is more likely to cause long

term complications than a one time crumb - constant low level exposure needs

less of an amount to cause visible damage (which means malabsorption) and

antibody increases (and TTG antibodies are what causes NH lympoma's

increased risk).

Of course, damage and symptoms are entirely different matters. Some people

have no symptoms from eating wheat bread and pizza daily (other than

osteoporosis, anemia and cancer), while others will become quite ill for

days from <1mg exposure.

Of course, that doc probably tells kids they'll outgrow CD, also. And that

alcoholics can have social drinks without any problem.

> -----Original Message-----

>

> I swear I've been glutened by amounts so small that I cannot tell

> you where they're hiding. There's nothing quite like that

> Got-Glutened feeling.

>

> But yet this MD was saying this is ludicrous - a tiny crumb can't

> hurt any one.

>

> So... Can crumbs defeat us or not?...

>

> I deliberately choose to ingest very very small amounts of

> gluten for religious reasons. I take an itty bitty amount of

> reduced gluten substance once weekly for religious reasons.

> Two weeks ago I did that two days in a row. I WAS MISERABLE

> FOR DAYS.

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

K - I would love to see those studies - links or whatever. My DD

has a friend who in 5th grade had cancer and osteoporosis both

related to CD. She was compliant with the diet for a few years but

now as a freshman in high school she cheats constantly. She claims

now that she is healed she can have some gluten - as long as she

isn't reacting she figures she is successfully cheating. She did

get horribly sick from the gluten on their recent trip to Italy, so

maybe that will get her to be compliant, but I'd love to have

something to give her to get her to see she's only cheating her own

health. I don't know anything about her parents or if they know she

isn't compliant...

thanks

sue in denver

>

> At least one study found damage via biopsy from someone that at 1

mg/day.

> Another showed 100 mg once a month was enough to sustain damage

via biopsy

> (and both elevated antibody levels and kept them high enough to

test).

> Neither of these amounts is " big " , especially when talking about

bread. But,

> in your case, damage from that communion wafer is more likely to

cause long

> term complications than a one time crumb - constant low level

exposure needs

> less of an amount to cause visible damage (which means

malabsorption) and

> antibody increases (and TTG antibodies are what causes NH lympoma's

> increased risk).

>

> Of course, damage and symptoms are entirely different matters.

Some people

> have no symptoms from eating wheat bread and pizza daily (other

than

> osteoporosis, anemia and cancer), while others will become quite

ill for

> days from <1mg exposure.

>

> Of course, that doc probably tells kids they'll outgrow CD, also.

And that

> alcoholics can have social drinks without any problem.

>

[Guest guest]

K - I would love to see those studies - links or whatever. My DD

has a friend who in 5th grade had cancer and osteoporosis both

related to CD. She was compliant with the diet for a few years but

now as a freshman in high school she cheats constantly. She claims

now that she is healed she can have some gluten - as long as she

isn't reacting she figures she is successfully cheating. She did

get horribly sick from the gluten on their recent trip to Italy, so

maybe that will get her to be compliant, but I'd love to have

something to give her to get her to see she's only cheating her own

health. I don't know anything about her parents or if they know she

isn't compliant...

thanks

sue in denver

>

> At least one study found damage via biopsy from someone that at 1

mg/day.

> Another showed 100 mg once a month was enough to sustain damage

via biopsy

> (and both elevated antibody levels and kept them high enough to

test).

> Neither of these amounts is " big " , especially when talking about

bread. But,

> in your case, damage from that communion wafer is more likely to

cause long

> term complications than a one time crumb - constant low level

exposure needs

> less of an amount to cause visible damage (which means

malabsorption) and

> antibody increases (and TTG antibodies are what causes NH lympoma's

> increased risk).

>

> Of course, damage and symptoms are entirely different matters.

Some people

> have no symptoms from eating wheat bread and pizza daily (other

than

> osteoporosis, anemia and cancer), while others will become quite

ill for

> days from <1mg exposure.

>

> Of course, that doc probably tells kids they'll outgrow CD, also.

And that

> alcoholics can have social drinks without any problem.

>

[Guest guest]

K - I would love to see those studies - links or whatever. My DD

has a friend who in 5th grade had cancer and osteoporosis both

related to CD. She was compliant with the diet for a few years but

now as a freshman in high school she cheats constantly. She claims

now that she is healed she can have some gluten - as long as she

isn't reacting she figures she is successfully cheating. She did

get horribly sick from the gluten on their recent trip to Italy, so

maybe that will get her to be compliant, but I'd love to have

something to give her to get her to see she's only cheating her own

health. I don't know anything about her parents or if they know she

isn't compliant...

thanks

sue in denver

>

> At least one study found damage via biopsy from someone that at 1

mg/day.

> Another showed 100 mg once a month was enough to sustain damage

via biopsy

> (and both elevated antibody levels and kept them high enough to

test).

> Neither of these amounts is " big " , especially when talking about

bread. But,

> in your case, damage from that communion wafer is more likely to

cause long

> term complications than a one time crumb - constant low level

exposure needs

> less of an amount to cause visible damage (which means

malabsorption) and

> antibody increases (and TTG antibodies are what causes NH lympoma's

> increased risk).

>

> Of course, damage and symptoms are entirely different matters.

Some people

> have no symptoms from eating wheat bread and pizza daily (other

than

> osteoporosis, anemia and cancer), while others will become quite

ill for

> days from <1mg exposure.

>

> Of course, that doc probably tells kids they'll outgrow CD, also.

And that

> alcoholics can have social drinks without any problem.

>

[Guest guest]

Most have summaries that are easily found at celiac.com. They are also at

pubmed.com (use their search tool) and often will have links to the entire

study as well.

Sorry to hear of your friend. There are always the extreme cases that get

written up - those with severe complications from early disease that goes

untreated and those who die in the 20's from cancer after thinking they were

" cured of " or " outgrew " CD. Of course, that doesn't happen. But, teens get a

honeymoon period where damage heals about as quickly as it is caused, in the

intestines, and where GI symptoms don't appear. Instead, those nasty

antibodies build up to cause other diseases and the malabsoption contributes

to lifelong problems (some of which she has already had and is likely to

re-encounter soon). Of course, cheating is seen by some teeans as having

desireable consequences - weight loss/control and infertility, for example.

> -----Original Message-----

>

> K - I would love to see those studies - links or whatever. My DD

> has a friend who in 5th grade had cancer and osteoporosis both

> related to CD. She was compliant with the diet for a few years but

> now as a freshman in high school she cheats constantly. She claims

> now that she is healed she can have some gluten - as long as she

> isn't reacting she figures she is successfully cheating. She did

> get horribly sick from the gluten on their recent trip to Italy, so

> maybe that will get her to be compliant, but I'd love to have

> something to give her to get her to see she's only cheating her own

> health. I don't know anything about her parents or if they know she

> isn't compliant...

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

In response to below: " Of course, cheating is seen by some

teens as having desireable consequences - weight loss/control

and infertility, for example. "

** One of my close friends had a co-worker that had been diagnosed

with Celiac at 18. She also had some eating disorder issues. She

began eating lots of gluten just to induce vomitting!!! I can't

imagine all the damage she must have purposely caused her body.

>

> Most have summaries that are easily found at celiac.com. They are

also at

> pubmed.com (use their search tool) and often will have links to

the entire

> study as well.

>

> Sorry to hear of your friend. There are always the extreme cases

that get

> written up - those with severe complications from early disease

that goes

> untreated and those who die in the 20's from cancer after thinking

they were

> " cured of " or " outgrew " CD. Of course, that doesn't happen. But,

teens get a

> honeymoon period where damage heals about as quickly as it is

caused, in the

> intestines, and where GI symptoms don't appear. Instead, those

nasty

> antibodies build up to cause other diseases and the malabsoption

contributes

> to lifelong problems (some of which she has already had and is

likely to

> re-encounter soon). Of course, cheating is seen by some teeans as

having

> desireable consequences - weight loss/control and infertility, for

example.

>

[Guest guest]

OMG! I cant immagine wanting to intentionally cause a reaction. When

I have one I am sick for at least 2 days. I hope she was able to get

some help or treatment!

> >

> > Most have summaries that are easily found at celiac.com. They are

> also at

> > pubmed.com (use their search tool) and often will have links to

> the entire

> > study as well.

> >

> > Sorry to hear of your friend. There are always the extreme cases

> that get

> > written up - those with severe complications from early disease

> that goes

> > untreated and those who die in the 20's from cancer after

thinking

> they were

> > " cured of " or " outgrew " CD. Of course, that doesn't happen. But,

> teens get a

> > honeymoon period where damage heals about as quickly as it is

> caused, in the

> > intestines, and where GI symptoms don't appear. Instead, those

> nasty

> > antibodies build up to cause other diseases and the malabsoption

> contributes

> > to lifelong problems (some of which she has already had and is

> likely to

> > re-encounter soon). Of course, cheating is seen by some teeans

as

> having

> > desireable consequences - weight loss/control and infertility,

for

> example.

> >

>