Re: A Liitle Bit of Gluten

January 12, 2006

I think this is a tough statement to say yes or no to. Here's why I say that: Yes, any amount of gluten will do damage. How much is tough to say, I think that depends on the person. But damage does happen. And repeated ingestion of gluten is DEFINITELY bad. Even a little bit at a time. Reaction or no, it does do damage. That said, it is NOT the end of the world when mistakes happen. Such as what happened to your daughter. Should the school be more careful? Yes. But as far as internal damage to your daughter, it will heal up as long as she goes back to being GF. You dealt with her very well, explaining the difference and why she can't buy her lunch. And that she needs to be clear to any substitutes about why she MUST go get her lunch, and if they still argue with her she needs to say "We need to find the nurse." or whomever it is that knows her condition other than her teacher.

So, what I'm saying is that yes, a little gluten DOES do damage and should be avoided. But mistakes happen and as long as GF is the general rule of thumb, it will not cause permanent, life-threatening damage.

Does that make sense?

Bridget

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Meredith Ann GainesSent: Thursday, January 12, 2006 9:19 AMTo: SillyYaksSubject: A Liitle Bit of Gluten

**This ended up being a long message, but I hope to hear what you all think**

I have seen a lot of comments saying things like "it must be safe, I have had no reaction" and things along the same lines. I have always been told by our Pedi GI and the Nutritionist that Celiac is not like say Diabetes, where some diabetics can eat a little sugar and be okay. I have been told that even a little gluten can go a long way to hurting your small intestine, even if you have not had symptoms. I am wondering how you all feel about this statement? Have you been told the same thing?? We have to be very careful with our daughter because she does not show immediate signs when she gets glutened. Sometimes she doesn't show signs at all. Case in point: We had an incident at school where a substitute teacher in the lunch room wouldn't let her go back and get her lunch and told her to go through the lunch line and eat. My daughter told her that she wasn't allowed and the teacher said it was okay. My daughter translated that in her brain to mean that it was okay for HER to eat. So she did, and ended up eating large amounts of gluten (fish sticks, French fries in same oil, 2 rolls, and ice cream). (For the record, we had along talk at home about just because mommy makes GF fish sticks and other things at home doesn't mean that all are GF) She never showed any signs that it had happened. We only found out because my daughter mentioned it a few days later and asked if she could buy her lunch again. Anyway, the point is, she had no reaction whatsoever, but I am quite certain that it did some negative things to her small intestine. In any case, it would seem to me that Celiacs should stay away if there is any possible chance for being glutened, whether they react or not. I am not trying to say that what I am stating is correct. I am just a little ... okay maybe a lot ... confused. I'm just learning through all this and would appreciate any input and enlightenment on this topic.

Thanks everyone...

Meredith, mom to twins Madisyn and Mackenzie

January 12, 2006

I think this is a tough statement to say yes or no to. Here's why I say that: Yes, any amount of gluten will do damage. How much is tough to say, I think that depends on the person. But damage does happen. And repeated ingestion of gluten is DEFINITELY bad. Even a little bit at a time. Reaction or no, it does do damage. That said, it is NOT the end of the world when mistakes happen. Such as what happened to your daughter. Should the school be more careful? Yes. But as far as internal damage to your daughter, it will heal up as long as she goes back to being GF. You dealt with her very well, explaining the difference and why she can't buy her lunch. And that she needs to be clear to any substitutes about why she MUST go get her lunch, and if they still argue with her she needs to say "We need to find the nurse." or whomever it is that knows her condition other than her teacher.

So, what I'm saying is that yes, a little gluten DOES do damage and should be avoided. But mistakes happen and as long as GF is the general rule of thumb, it will not cause permanent, life-threatening damage.

Does that make sense?

Bridget

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Meredith Ann GainesSent: Thursday, January 12, 2006 9:19 AMTo: SillyYaksSubject: A Liitle Bit of Gluten

**This ended up being a long message, but I hope to hear what you all think**

I have seen a lot of comments saying things like "it must be safe, I have had no reaction" and things along the same lines. I have always been told by our Pedi GI and the Nutritionist that Celiac is not like say Diabetes, where some diabetics can eat a little sugar and be okay. I have been told that even a little gluten can go a long way to hurting your small intestine, even if you have not had symptoms. I am wondering how you all feel about this statement? Have you been told the same thing?? We have to be very careful with our daughter because she does not show immediate signs when she gets glutened. Sometimes she doesn't show signs at all. Case in point: We had an incident at school where a substitute teacher in the lunch room wouldn't let her go back and get her lunch and told her to go through the lunch line and eat. My daughter told her that she wasn't allowed and the teacher said it was okay. My daughter translated that in her brain to mean that it was okay for HER to eat. So she did, and ended up eating large amounts of gluten (fish sticks, French fries in same oil, 2 rolls, and ice cream). (For the record, we had along talk at home about just because mommy makes GF fish sticks and other things at home doesn't mean that all are GF) She never showed any signs that it had happened. We only found out because my daughter mentioned it a few days later and asked if she could buy her lunch again. Anyway, the point is, she had no reaction whatsoever, but I am quite certain that it did some negative things to her small intestine. In any case, it would seem to me that Celiacs should stay away if there is any possible chance for being glutened, whether they react or not. I am not trying to say that what I am stating is correct. I am just a little ... okay maybe a lot ... confused. I'm just learning through all this and would appreciate any input and enlightenment on this topic.

Thanks everyone...

Meredith, mom to twins Madisyn and Mackenzie

January 12, 2006

I think this is a tough statement to say yes or no to. Here's why I say that: Yes, any amount of gluten will do damage. How much is tough to say, I think that depends on the person. But damage does happen. And repeated ingestion of gluten is DEFINITELY bad. Even a little bit at a time. Reaction or no, it does do damage. That said, it is NOT the end of the world when mistakes happen. Such as what happened to your daughter. Should the school be more careful? Yes. But as far as internal damage to your daughter, it will heal up as long as she goes back to being GF. You dealt with her very well, explaining the difference and why she can't buy her lunch. And that she needs to be clear to any substitutes about why she MUST go get her lunch, and if they still argue with her she needs to say "We need to find the nurse." or whomever it is that knows her condition other than her teacher.

So, what I'm saying is that yes, a little gluten DOES do damage and should be avoided. But mistakes happen and as long as GF is the general rule of thumb, it will not cause permanent, life-threatening damage.

Does that make sense?

Bridget

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Meredith Ann GainesSent: Thursday, January 12, 2006 9:19 AMTo: SillyYaksSubject: A Liitle Bit of Gluten

**This ended up being a long message, but I hope to hear what you all think**

I have seen a lot of comments saying things like "it must be safe, I have had no reaction" and things along the same lines. I have always been told by our Pedi GI and the Nutritionist that Celiac is not like say Diabetes, where some diabetics can eat a little sugar and be okay. I have been told that even a little gluten can go a long way to hurting your small intestine, even if you have not had symptoms. I am wondering how you all feel about this statement? Have you been told the same thing?? We have to be very careful with our daughter because she does not show immediate signs when she gets glutened. Sometimes she doesn't show signs at all. Case in point: We had an incident at school where a substitute teacher in the lunch room wouldn't let her go back and get her lunch and told her to go through the lunch line and eat. My daughter told her that she wasn't allowed and the teacher said it was okay. My daughter translated that in her brain to mean that it was okay for HER to eat. So she did, and ended up eating large amounts of gluten (fish sticks, French fries in same oil, 2 rolls, and ice cream). (For the record, we had along talk at home about just because mommy makes GF fish sticks and other things at home doesn't mean that all are GF) She never showed any signs that it had happened. We only found out because my daughter mentioned it a few days later and asked if she could buy her lunch again. Anyway, the point is, she had no reaction whatsoever, but I am quite certain that it did some negative things to her small intestine. In any case, it would seem to me that Celiacs should stay away if there is any possible chance for being glutened, whether they react or not. I am not trying to say that what I am stating is correct. I am just a little ... okay maybe a lot ... confused. I'm just learning through all this and would appreciate any input and enlightenment on this topic.

Thanks everyone...

Meredith, mom to twins Madisyn and Mackenzie

January 12, 2006

>But as far as internal damage to

> your daughter, it will heal up as long as she goes back to being GF. You

> dealt with her very well, explaining the difference and why she can't

> buy her lunch. And that she needs to be clear to any substitutes about

> why she MUST go get her lunch, and if they still argue with her she

> needs to say " We need to find the nurse. " or whomever it is that knows

> her condition other than her teacher.

>

> So, what I'm saying is that yes, a little gluten DOES do damage and

> should be avoided. But mistakes happen and as long as GF is the general

> rule of thumb, it will not cause permanent, life-threatening damage.

>

I think Bridget is very wise.

I'm new to this whole GF " thing " . I only went GF in October.

I guess I'm blessed that I react very strongly to even a smidge of

gluten. When I'm doubled over in pain, I don't THINK of it as a

blessing. But pain is nature's " red light " to let you know that

something is wrong. In my case, nature's red light lets me know quite

clearly when I've been glutened.

To live life ON THE WHOLE as GF is about the best we can do. There

will ALWAYS be invitations to accident and injury. The accident can

come in many forms: accidental pollution of the peanut butter jar, an

ignorant waitress, an ignorant cook, a substitute teacher, flour dust

in the air, a well-meaning but ignorant friend.

Your child has a long (and we hope happy and healthy) life ahead of

her. She not only has to deal with substitute teachers and the school

cafeteria now, but she'll have to deal with ignorant waitresses,

well-meaning but ignorant friends, ignorant cooks, flour dust in the

air, and more, for her whole life.

Yes, a little bit can cause damage. But if you're GF on the whole,

then the damage should be able to heal.

If glutening happens a lot, on a regular basis, even via ignorance or

oversight, it can lead to refractory sprue that won't heal. THAT is to

be avoided, for sure!

For myself, I've had a few incidents of accidental glutening. Each

reaction seems worse than the previous. Based on what you write, I see

now that this is a blessing. Better to have nature's gift of a painful

little red light to help me learn. (I guess I have a thick skull and

need a whallop on the side of the head to help me learn!) I think if I

were " silent sprue " and had no reactions to gluten ingestion, it would

lead me immediately to my favorite land: DaNile (denial). I'd be

having " just one Tim Horton's donut " or " just one Hostess cupcake " ...

In terms of alcoholism they say " Just one gets you drunk " . And the

same with me, I guess. If I didn't have the gift of pain, I'd be

saying " just one " and then having it. I'd then say " See? No damage

done " and go on to have two, twenty, twenty score...

Thank you for allowing me the privilege to look at pain as a gift.

Hugs to you and your daughter!

Good luck! It's a tough road to walk.

Big fat raspberry to any one who says " All you need is **JUST** a

gluten-free diet... " . PHHHHHHHHHHHHHHHHHHHHT!!! " JUST " , my fanny!

PS, maybe your daughter needs a medic-alert bracelet. If a substitute

teacher gives her grief she can just show her wrist. I've been

pondering a medic alert bracelet for myself. If (Heaven forbid) I

should be in a position where I can't speak for myself, I'd want

SOMETHING to say " no gluten, please! " for me. Can I get a medic alert

bracelet with engraving in 37 languages?? :-)

January 12, 2006

Hi Meredith,

Thanks for the question. I'm also new to this, and your understanding of the

situation is exactly the same as mine. A little bit is never okay, even if

there is no reaction. Dr. Green told us 1/8 tsp. per day of gluten is enough to

cause damage to the intestines. I can't understand how it is even possible to

eat out at all due to the risk of cross-contamination. But that is a question

I've been waiting to post seperately.

Laurie in NJ

" Meredith Ann Gaines " wrote:

>**This ended up being a long message, but I hope to hear what you all think**

>

>I have seen a lot of comments saying things like " it must be safe, I have had

no reaction " and things along the same lines. I have always been told by our

Pedi GI and the Nutritionist that Celiac is not like say Diabetes, where some

diabetics can eat a little sugar and be okay. I have been told that even a

little gluten can go a long way to hurting your small intestine, even if you

have not had symptoms. I am wondering how you all feel about this statement?

Have you been told the same thing?? We have to be very careful with our

daughter because she does not show immediate signs when she gets glutened.

Sometimes she doesn't show signs at all. Case in point: We had an incident at

school where a substitute teacher in the lunch room wouldn't let her go back and

get her lunch and told her to go through the lunch line and eat. My daughter

told her that she wasn't allowed and the teacher said it was okay. My daughter

translated that in her brain to mean that it was okay for HER to eat. So she

did, and ended up eating large amounts of gluten (fish sticks, French fries in

same oil, 2 rolls, and ice cream). (For the record, we had along talk at home

about just because mommy makes GF fish sticks and other things at home doesn't

mean that all are GF) She never showed any signs that it had happened. We only

found out because my daughter mentioned it a few days later and asked if she

could buy her lunch again. Anyway, the point is, she had no reaction

whatsoever, but I am quite certain that it did some negative things to her small

intestine. In any case, it would seem to me that Celiacs should stay away if

there is any possible chance for being glutened, whether they react or not. I

am not trying to say that what I am stating is correct. I am just a little ...

okay maybe a lot ... confused. I'm just learning through all this and would

appreciate any input and enlightenment on this topic.

>Thanks everyone...

>Meredith, mom to twins Madisyn and Mackenzie

>

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January 12, 2006