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Hi Sally,

Thanks for the update—good news all

around! Bummer on the lo mein. It’s a favorite for my ds also, but I make

it at home with rice pasta now. Never as good as the restaurant, but adequate.

I cannot seem to make a decent Pad Thai at home, but have hopes for getting

that gf at a good thai place. It uses rice noodles anyway and at least some of

the prepared pad thai sauces are gf. Might be a good alternative for Mattie,

too.

I can’t help you with the growth

question—my 13 year old ds is 6 ft tall—failure to thrive is not

the issue around here! I haven’t tried any bread of any kind since going

gf—I’m waiting for my new mixer to arrive! When I even pick up an

Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I

used to make all of our bread using a food processor, but burned that

engine out after a few years.

I look forward to hearing how you

progress!

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001

Sent: Sunday, January 22, 2006

9:01 PM

To: SillyYaks

Subject: Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3

weeks ago. Just

wanted to say thanks to all who emailed and

responded to my questions

re: what foods to buy first. And... great

suggestion from whomever

wrote and said try not to replace his favorites

with faux gluten free.

We are trying so many new foods with him (Mattie

has lots of sensory

issues with food so I was so hesitant to do this)

and so far so good.

Still haven't found a good substitute for white

bread but I haven't

order the kinnikinick? bread yet or made my own,

just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to

order chinese friday

night. We had them make his former favorite

chicken lo mein without the

noodles and the cook promised not to " cross

contaminate " but I realized

later that the sauce most likely had soy sauce in

it and probably not

GF. Oh well, live and learn. Mattie

has never had any intestinal

reaction to gluten that we know of so we will just

be careful next time.

I have a few questions of course. For those of you

that have children

with cd... did your child have growth

issues? That is Mattie's only

symptom of cd that we know of.. his poor

growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little

guy. My husband and I come

from very tall families both of us have brothers

that are 6'6 " so we

have been trying to figure this out for awhile

now. Anyway... I was

wondering how long did it take before you saw a

big change in growth?

I am hoping to see some changes in 6 months or is

that unrealistic?

Also, how common is it that cd is genetic

and is passed from the

parent to child? My husband and I have not been

" tested " yet.. our dr's

want us to see them before ordering the bloodwork,

trying to schedule

that. We have 3 kids... our 4 1/2 year old

was tested and was

negative, our 9 month old won't be tested until

she is at least 2.

TMI, right??? Anyway... things are going

well, just feel like I have

to plan my meals so much more in advance but can

honestly say he is

handling it as best as we could expect.

Thanks again for all the great

ideas and advice,

Sally

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Share on other sites

Hi Sally,

Thanks for the update—good news all

around! Bummer on the lo mein. It’s a favorite for my ds also, but I make

it at home with rice pasta now. Never as good as the restaurant, but adequate.

I cannot seem to make a decent Pad Thai at home, but have hopes for getting

that gf at a good thai place. It uses rice noodles anyway and at least some of

the prepared pad thai sauces are gf. Might be a good alternative for Mattie,

too.

I can’t help you with the growth

question—my 13 year old ds is 6 ft tall—failure to thrive is not

the issue around here! I haven’t tried any bread of any kind since going

gf—I’m waiting for my new mixer to arrive! When I even pick up an

Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I

used to make all of our bread using a food processor, but burned that

engine out after a few years.

I look forward to hearing how you

progress!

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001

Sent: Sunday, January 22, 2006

9:01 PM

To: SillyYaks

Subject: Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3

weeks ago. Just

wanted to say thanks to all who emailed and

responded to my questions

re: what foods to buy first. And... great

suggestion from whomever

wrote and said try not to replace his favorites

with faux gluten free.

We are trying so many new foods with him (Mattie

has lots of sensory

issues with food so I was so hesitant to do this)

and so far so good.

Still haven't found a good substitute for white

bread but I haven't

order the kinnikinick? bread yet or made my own,

just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to

order chinese friday

night. We had them make his former favorite

chicken lo mein without the

noodles and the cook promised not to " cross

contaminate " but I realized

later that the sauce most likely had soy sauce in

it and probably not

GF. Oh well, live and learn. Mattie

has never had any intestinal

reaction to gluten that we know of so we will just

be careful next time.

I have a few questions of course. For those of you

that have children

with cd... did your child have growth

issues? That is Mattie's only

symptom of cd that we know of.. his poor

growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little

guy. My husband and I come

from very tall families both of us have brothers

that are 6'6 " so we

have been trying to figure this out for awhile

now. Anyway... I was

wondering how long did it take before you saw a

big change in growth?

I am hoping to see some changes in 6 months or is

that unrealistic?

Also, how common is it that cd is genetic

and is passed from the

parent to child? My husband and I have not been

" tested " yet.. our dr's

want us to see them before ordering the bloodwork,

trying to schedule

that. We have 3 kids... our 4 1/2 year old

was tested and was

negative, our 9 month old won't be tested until

she is at least 2.

TMI, right??? Anyway... things are going

well, just feel like I have

to plan my meals so much more in advance but can

honestly say he is

handling it as best as we could expect.

Thanks again for all the great

ideas and advice,

Sally

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Hi Sally,

Thanks for the update—good news all

around! Bummer on the lo mein. It’s a favorite for my ds also, but I make

it at home with rice pasta now. Never as good as the restaurant, but adequate.

I cannot seem to make a decent Pad Thai at home, but have hopes for getting

that gf at a good thai place. It uses rice noodles anyway and at least some of

the prepared pad thai sauces are gf. Might be a good alternative for Mattie,

too.

I can’t help you with the growth

question—my 13 year old ds is 6 ft tall—failure to thrive is not

the issue around here! I haven’t tried any bread of any kind since going

gf—I’m waiting for my new mixer to arrive! When I even pick up an

Ener-g loaf, and it feels so dense and heavy—I just can’t buy it. I

used to make all of our bread using a food processor, but burned that

engine out after a few years.

I look forward to hearing how you

progress!

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of sallyjd2001

Sent: Sunday, January 22, 2006

9:01 PM

To: SillyYaks

Subject: Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3

weeks ago. Just

wanted to say thanks to all who emailed and

responded to my questions

re: what foods to buy first. And... great

suggestion from whomever

wrote and said try not to replace his favorites

with faux gluten free.

We are trying so many new foods with him (Mattie

has lots of sensory

issues with food so I was so hesitant to do this)

and so far so good.

Still haven't found a good substitute for white

bread but I haven't

order the kinnikinick? bread yet or made my own,

just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to

order chinese friday

night. We had them make his former favorite

chicken lo mein without the

noodles and the cook promised not to " cross

contaminate " but I realized

later that the sauce most likely had soy sauce in

it and probably not

GF. Oh well, live and learn. Mattie

has never had any intestinal

reaction to gluten that we know of so we will just

be careful next time.

I have a few questions of course. For those of you

that have children

with cd... did your child have growth

issues? That is Mattie's only

symptom of cd that we know of.. his poor

growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little

guy. My husband and I come

from very tall families both of us have brothers

that are 6'6 " so we

have been trying to figure this out for awhile

now. Anyway... I was

wondering how long did it take before you saw a

big change in growth?

I am hoping to see some changes in 6 months or is

that unrealistic?

Also, how common is it that cd is genetic

and is passed from the

parent to child? My husband and I have not been

" tested " yet.. our dr's

want us to see them before ordering the bloodwork,

trying to schedule

that. We have 3 kids... our 4 1/2 year old

was tested and was

negative, our 9 month old won't be tested until

she is at least 2.

TMI, right??? Anyway... things are going

well, just feel like I have

to plan my meals so much more in advance but can

honestly say he is

handling it as best as we could expect.

Thanks again for all the great

ideas and advice,

Sally

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" For those of you that have children with cd... did your child have growth

issues? That is Mattie's only symptom of cd that we know of.. his poor

growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. "

My 8 1/2 year old is also really small. He just weighs 48 pounds and is 46

inches tall. He gained one inch on his trial G/F diet since November. He

also really has no symptoms of Celiac, but little sister is a Celiac. He is

allowed to cheat sometimes on his diet since he is asymptomatic, however I

am keeping an eye on his behavior since cheating. He started with some

garlic bread last night and an In & Out burger today. No behavioral or

physical symptoms in the least. We're not sure he is Celiac, but since he

grew and inch in just about 10 weeks, we're considering he might be. He

will be back to a complete GF diet starting tomorrow for several more

months. Then after 6 months they will draw some blood. Our GI said it was no

use poking him since he grew the inch--something he hardly ever does! He's

the size of an average 5 year old--that is tiny!

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My newly diagnosed (4 days ago) daughter is twleve,

and her only symptom is " failure to thrive " . She is

almost 13, weights only 58 pounds, and is only 4 feet

5 inches. She is also ADHD, and it was thanks to the

dr. prescribing her ritalin that we ended up with her

diagnosis. He refused to give her more ritalin until

we figured out that it wasnt the cause of her delayed

growth. So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible

on the diet, since the doctors tell me that once she

starts menstruating, she will not grow any taller!

This definitley generated a sense of urgency. My

biggest concern is that since she is asymptomatic in

terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did

> your child have growth

> issues? That is Mattie's only symptom of cd that we

> know of.. his poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43

> inches tall. Little guy. "

>

> My 8 1/2 year old is also really small. He just

> weighs 48 pounds and is 46

> inches tall. He gained one inch on his trial G/F

> diet since November. He

> also really has no symptoms of Celiac, but little

> sister is a Celiac. He is

> allowed to cheat sometimes on his diet since he is

> asymptomatic, however I

> am keeping an eye on his behavior since cheating. He

> started with some

> garlic bread last night and an In & Out burger

> today. No behavioral or

> physical symptoms in the least. We're not sure he is

> Celiac, but since he

> grew and inch in just about 10 weeks, we're

> considering he might be. He

> will be back to a complete GF diet starting tomorrow

> for several more

> months. Then after 6 months they will draw some

> blood. Our GI said it was no

> use poking him since he grew the inch--something he

> hardly ever does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

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My newly diagnosed (4 days ago) daughter is twleve,

and her only symptom is " failure to thrive " . She is

almost 13, weights only 58 pounds, and is only 4 feet

5 inches. She is also ADHD, and it was thanks to the

dr. prescribing her ritalin that we ended up with her

diagnosis. He refused to give her more ritalin until

we figured out that it wasnt the cause of her delayed

growth. So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible

on the diet, since the doctors tell me that once she

starts menstruating, she will not grow any taller!

This definitley generated a sense of urgency. My

biggest concern is that since she is asymptomatic in

terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did

> your child have growth

> issues? That is Mattie's only symptom of cd that we

> know of.. his poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43

> inches tall. Little guy. "

>

> My 8 1/2 year old is also really small. He just

> weighs 48 pounds and is 46

> inches tall. He gained one inch on his trial G/F

> diet since November. He

> also really has no symptoms of Celiac, but little

> sister is a Celiac. He is

> allowed to cheat sometimes on his diet since he is

> asymptomatic, however I

> am keeping an eye on his behavior since cheating. He

> started with some

> garlic bread last night and an In & Out burger

> today. No behavioral or

> physical symptoms in the least. We're not sure he is

> Celiac, but since he

> grew and inch in just about 10 weeks, we're

> considering he might be. He

> will be back to a complete GF diet starting tomorrow

> for several more

> months. Then after 6 months they will draw some

> blood. Our GI said it was no

> use poking him since he grew the inch--something he

> hardly ever does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

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Share on other sites

My newly diagnosed (4 days ago) daughter is twleve,

and her only symptom is " failure to thrive " . She is

almost 13, weights only 58 pounds, and is only 4 feet

5 inches. She is also ADHD, and it was thanks to the

dr. prescribing her ritalin that we ended up with her

diagnosis. He refused to give her more ritalin until

we figured out that it wasnt the cause of her delayed

growth. So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible

on the diet, since the doctors tell me that once she

starts menstruating, she will not grow any taller!

This definitley generated a sense of urgency. My

biggest concern is that since she is asymptomatic in

terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did

> your child have growth

> issues? That is Mattie's only symptom of cd that we

> know of.. his poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43

> inches tall. Little guy. "

>

> My 8 1/2 year old is also really small. He just

> weighs 48 pounds and is 46

> inches tall. He gained one inch on his trial G/F

> diet since November. He

> also really has no symptoms of Celiac, but little

> sister is a Celiac. He is

> allowed to cheat sometimes on his diet since he is

> asymptomatic, however I

> am keeping an eye on his behavior since cheating. He

> started with some

> garlic bread last night and an In & Out burger

> today. No behavioral or

> physical symptoms in the least. We're not sure he is

> Celiac, but since he

> grew and inch in just about 10 weeks, we're

> considering he might be. He

> will be back to a complete GF diet starting tomorrow

> for several more

> months. Then after 6 months they will draw some

> blood. Our GI said it was no

> use poking him since he grew the inch--something he

> hardly ever does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

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Share on other sites

>>> My only mistake I think I have made so far was to order chinese

friday night. We had them make his former favorite chicken lo mein

without the noodles and the cook promised not to " cross

contaminate " but I realized later that the sauce most likely had soy

sauce in it and probably not GF.<<<

At the chinese place that we go to, they have Mei Fun. It is rice

noodles with vegetables and then your choice of chicken, etc. The

person at the counter said they only put salt in this dish as far as

seasonings go. Our CD daughter ate them and loved them and has never

shown a reaction to the dish. (Although, she does not show outward

symptoms very easily.) Also, this same place has a " Special Diet and

Health " section of there menu. These items are only prepared with

garlic, ginger, green onions, and red wine. Then it has different

options of chicken, just veggies, shrimp, etc. This is what my girls

choose just about every time we get take-out from this place. So,

look into those 2 options for your CD child. You may need to look

around at different chinese take-out places to find one that has

these items. And don't forget to ask as many questions as possible

before-hand to make sure they are in fact GF.

>>> I have a few questions of course. For those of you that have

children with cd... did your child have growth issues? ...

Anyway... I was wondering how long did it take before you saw a big

change in growth? I am hoping to see some changes in 6 months or is

that unrealistic?<<<

Our CD daughter (now 5.5, diagnosed at 20months) was around the

90-95th percentile for weight and height up until she started

showing symptoms at around 18months. Then she fell quickly down the

charts, especially with weight. After being diagnosed, she fairly

quickly gained back the weight and began to grow again. Her height

took a little longer to get back to what was normal for her, but

still fairly quickly. Recommended by our ped GI, we gave her

Pediasure after diagnosis and this quickly added enough calories and

nutrition to bulk her up. Actually, a few months after diagnosis was

the only time she has ever had " chub " . :) So, all that being said, I

don't think 6 months is too short amount of time to see significant

change in your CD child's growth.

>>> Also, how common is it that cd is genetic and is passed from

the parent to child? My husband and I have not been " tested " yet..

our dr's want us to see them before ordering the bloodwork, trying

to schedule that. <<<

My understanding is that CD is only genetic...so someone in the

family line must have CD. However, my husband and I have both been

tested are were both negative. No one else in our extended families

have felt " the need " to get tested so we have no idea what side

carries this gene.

Hope all this helps. I still remember how overwhelming it felt to

have a child newly diagnosed with CD. So I want to assure you that

it does get easier, much easier! We have been doing the GF thing now

for almost 4 yrs and it is like second nature now. Sure there are

still times of extra hassle or frustration but all-in-all, we have 2

healthy kiddos and could not feel luckier!!

Blessings,

Nina

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>>> My only mistake I think I have made so far was to order chinese

friday night. We had them make his former favorite chicken lo mein

without the noodles and the cook promised not to " cross

contaminate " but I realized later that the sauce most likely had soy

sauce in it and probably not GF.<<<

At the chinese place that we go to, they have Mei Fun. It is rice

noodles with vegetables and then your choice of chicken, etc. The

person at the counter said they only put salt in this dish as far as

seasonings go. Our CD daughter ate them and loved them and has never

shown a reaction to the dish. (Although, she does not show outward

symptoms very easily.) Also, this same place has a " Special Diet and

Health " section of there menu. These items are only prepared with

garlic, ginger, green onions, and red wine. Then it has different

options of chicken, just veggies, shrimp, etc. This is what my girls

choose just about every time we get take-out from this place. So,

look into those 2 options for your CD child. You may need to look

around at different chinese take-out places to find one that has

these items. And don't forget to ask as many questions as possible

before-hand to make sure they are in fact GF.

>>> I have a few questions of course. For those of you that have

children with cd... did your child have growth issues? ...

Anyway... I was wondering how long did it take before you saw a big

change in growth? I am hoping to see some changes in 6 months or is

that unrealistic?<<<

Our CD daughter (now 5.5, diagnosed at 20months) was around the

90-95th percentile for weight and height up until she started

showing symptoms at around 18months. Then she fell quickly down the

charts, especially with weight. After being diagnosed, she fairly

quickly gained back the weight and began to grow again. Her height

took a little longer to get back to what was normal for her, but

still fairly quickly. Recommended by our ped GI, we gave her

Pediasure after diagnosis and this quickly added enough calories and

nutrition to bulk her up. Actually, a few months after diagnosis was

the only time she has ever had " chub " . :) So, all that being said, I

don't think 6 months is too short amount of time to see significant

change in your CD child's growth.

>>> Also, how common is it that cd is genetic and is passed from

the parent to child? My husband and I have not been " tested " yet..

our dr's want us to see them before ordering the bloodwork, trying

to schedule that. <<<

My understanding is that CD is only genetic...so someone in the

family line must have CD. However, my husband and I have both been

tested are were both negative. No one else in our extended families

have felt " the need " to get tested so we have no idea what side

carries this gene.

Hope all this helps. I still remember how overwhelming it felt to

have a child newly diagnosed with CD. So I want to assure you that

it does get easier, much easier! We have been doing the GF thing now

for almost 4 yrs and it is like second nature now. Sure there are

still times of extra hassle or frustration but all-in-all, we have 2

healthy kiddos and could not feel luckier!!

Blessings,

Nina

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Share on other sites

>>> My only mistake I think I have made so far was to order chinese

friday night. We had them make his former favorite chicken lo mein

without the noodles and the cook promised not to " cross

contaminate " but I realized later that the sauce most likely had soy

sauce in it and probably not GF.<<<

At the chinese place that we go to, they have Mei Fun. It is rice

noodles with vegetables and then your choice of chicken, etc. The

person at the counter said they only put salt in this dish as far as

seasonings go. Our CD daughter ate them and loved them and has never

shown a reaction to the dish. (Although, she does not show outward

symptoms very easily.) Also, this same place has a " Special Diet and

Health " section of there menu. These items are only prepared with

garlic, ginger, green onions, and red wine. Then it has different

options of chicken, just veggies, shrimp, etc. This is what my girls

choose just about every time we get take-out from this place. So,

look into those 2 options for your CD child. You may need to look

around at different chinese take-out places to find one that has

these items. And don't forget to ask as many questions as possible

before-hand to make sure they are in fact GF.

>>> I have a few questions of course. For those of you that have

children with cd... did your child have growth issues? ...

Anyway... I was wondering how long did it take before you saw a big

change in growth? I am hoping to see some changes in 6 months or is

that unrealistic?<<<

Our CD daughter (now 5.5, diagnosed at 20months) was around the

90-95th percentile for weight and height up until she started

showing symptoms at around 18months. Then she fell quickly down the

charts, especially with weight. After being diagnosed, she fairly

quickly gained back the weight and began to grow again. Her height

took a little longer to get back to what was normal for her, but

still fairly quickly. Recommended by our ped GI, we gave her

Pediasure after diagnosis and this quickly added enough calories and

nutrition to bulk her up. Actually, a few months after diagnosis was

the only time she has ever had " chub " . :) So, all that being said, I

don't think 6 months is too short amount of time to see significant

change in your CD child's growth.

>>> Also, how common is it that cd is genetic and is passed from

the parent to child? My husband and I have not been " tested " yet..

our dr's want us to see them before ordering the bloodwork, trying

to schedule that. <<<

My understanding is that CD is only genetic...so someone in the

family line must have CD. However, my husband and I have both been

tested are were both negative. No one else in our extended families

have felt " the need " to get tested so we have no idea what side

carries this gene.

Hope all this helps. I still remember how overwhelming it felt to

have a child newly diagnosed with CD. So I want to assure you that

it does get easier, much easier! We have been doing the GF thing now

for almost 4 yrs and it is like second nature now. Sure there are

still times of extra hassle or frustration but all-in-all, we have 2

healthy kiddos and could not feel luckier!!

Blessings,

Nina

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Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny

son. That will motivate her. She will also learn about new tasting foods,

like my son did. Have her try some new G/F foods at your local health food

store. She may really like some of the stuff they have like Pamela's G/F

cookies. I think they are pretty tasty!

TIA,

& Mike

909 980-2962

RE: Hi and Thanks

My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is

" failure to thrive " . She is almost 13, weights only 58 pounds, and is only

4 feet

5 inches. She is also ADHD, and it was thanks to the dr. prescribing her

ritalin that we ended up with her diagnosis. He refused to give her more

ritalin until we figured out that it wasnt the cause of her delayed growth.

So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible on the diet, since the

doctors tell me that once she starts menstruating, she will not grow any

taller!

This definitley generated a sense of urgency. My biggest concern is that

since she is asymptomatic in terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did your child have

> growth issues? That is Mattie's only symptom of cd that we know of..

> his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

> Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds and

> is 46 inches tall. He gained one inch on his trial G/F diet since

> November. He also really has no symptoms of Celiac, but little sister

> is a Celiac. He is allowed to cheat sometimes on his diet since he is

> asymptomatic, however I am keeping an eye on his behavior since

> cheating. He started with some garlic bread last night and an In & Out

> burger today. No behavioral or physical symptoms in the least. We're

> not sure he is Celiac, but since he grew and inch in just about 10

> weeks, we're considering he might be. He will be back to a complete

> GF diet starting tomorrow for several more months. Then after 6 months

> they will draw some blood. Our GI said it was no use poking him since

> he grew the inch--something he hardly ever does! He's the size of an

> average 5 year old--that is tiny!

>

>

>

>

>

>

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Share on other sites

Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny

son. That will motivate her. She will also learn about new tasting foods,

like my son did. Have her try some new G/F foods at your local health food

store. She may really like some of the stuff they have like Pamela's G/F

cookies. I think they are pretty tasty!

TIA,

& Mike

909 980-2962

RE: Hi and Thanks

My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is

" failure to thrive " . She is almost 13, weights only 58 pounds, and is only

4 feet

5 inches. She is also ADHD, and it was thanks to the dr. prescribing her

ritalin that we ended up with her diagnosis. He refused to give her more

ritalin until we figured out that it wasnt the cause of her delayed growth.

So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible on the diet, since the

doctors tell me that once she starts menstruating, she will not grow any

taller!

This definitley generated a sense of urgency. My biggest concern is that

since she is asymptomatic in terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did your child have

> growth issues? That is Mattie's only symptom of cd that we know of..

> his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

> Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds and

> is 46 inches tall. He gained one inch on his trial G/F diet since

> November. He also really has no symptoms of Celiac, but little sister

> is a Celiac. He is allowed to cheat sometimes on his diet since he is

> asymptomatic, however I am keeping an eye on his behavior since

> cheating. He started with some garlic bread last night and an In & Out

> burger today. No behavioral or physical symptoms in the least. We're

> not sure he is Celiac, but since he grew and inch in just about 10

> weeks, we're considering he might be. He will be back to a complete

> GF diet starting tomorrow for several more months. Then after 6 months

> they will draw some blood. Our GI said it was no use poking him since

> he grew the inch--something he hardly ever does! He's the size of an

> average 5 year old--that is tiny!

>

>

>

>

>

>

Link to comment
Share on other sites

Good luck Eileen! Keep her 100% G/F and let her read my post about my tiny

son. That will motivate her. She will also learn about new tasting foods,

like my son did. Have her try some new G/F foods at your local health food

store. She may really like some of the stuff they have like Pamela's G/F

cookies. I think they are pretty tasty!

TIA,

& Mike

909 980-2962

RE: Hi and Thanks

My newly diagnosed (4 days ago) daughter is twleve, and her only symptom is

" failure to thrive " . She is almost 13, weights only 58 pounds, and is only

4 feet

5 inches. She is also ADHD, and it was thanks to the dr. prescribing her

ritalin that we ended up with her diagnosis. He refused to give her more

ritalin until we figured out that it wasnt the cause of her delayed growth.

So off we went for a series of blood tests.

You can guess the rest....I am being tested tommorrow.

I am very glad to hear that quick growth is possible on the diet, since the

doctors tell me that once she starts menstruating, she will not grow any

taller!

This definitley generated a sense of urgency. My biggest concern is that

since she is asymptomatic in terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking for

4 days now and picked up lots of good information....

Eileen

--- & Mike wrote:

>

> " For those of you that have children with cd... did your child have

> growth issues? That is Mattie's only symptom of cd that we know of..

> his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

> Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds and

> is 46 inches tall. He gained one inch on his trial G/F diet since

> November. He also really has no symptoms of Celiac, but little sister

> is a Celiac. He is allowed to cheat sometimes on his diet since he is

> asymptomatic, however I am keeping an eye on his behavior since

> cheating. He started with some garlic bread last night and an In & Out

> burger today. No behavioral or physical symptoms in the least. We're

> not sure he is Celiac, but since he grew and inch in just about 10

> weeks, we're considering he might be. He will be back to a complete

> GF diet starting tomorrow for several more months. Then after 6 months

> they will draw some blood. Our GI said it was no use poking him since

> he grew the inch--something he hardly ever does! He's the size of an

> average 5 year old--that is tiny!

>

>

>

>

>

>

Link to comment
Share on other sites

Hi Eileen,

Best wishes. What I want to hear about

later (in addition to anything you want to tell us) is whether you find that a

GF diet cures any “symptoms” you and your daughter never noticed or

have attributed to something else. For instance, I wonder if her focus will

improve. (mine has…) Hoping…

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Eileen Goldman

Sent: Sunday, January 22, 2006

10:12 PM

To: SillyYaks

Subject: RE: Hi and

Thanks

My newly diagnosed (4 days

ago) daughter is twleve,

and her only symptom is " failure to

thrive " . She is

almost 13, weights only 58 pounds, and is only 4

feet

5 inches. She is also ADHD, and it was thanks

to the

dr. prescribing her ritalin that we ended up with

her

diagnosis. He refused to give her more

ritalin until

we figured out that it wasnt the cause of her

delayed

growth. So off we went for a series of blood

tests.

You can guess the rest....I am being tested

tommorrow.

I am very glad to hear that quick growth is

possible

on the diet, since the doctors tell me that once

she

starts menstruating, she will not grow any taller!

This definitley generated a sense of

urgency. My

biggest concern is that since she is asymptomatic

in

terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is

motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking

for

4 days now and picked up lots of good

information....

Eileen

--- & Mike

wrote:

>

> " For those of you that have

children with cd... did

> your child have growth

> issues? That is Mattie's only symptom

of cd that we

> know of.. his poor

> growth. He is 6 1/2 and weighs 42 lbs

and is 43

> inches tall. Little guy. "

>

> My 8 1/2 year old is also really small. He

just

> weighs 48 pounds and is 46

> inches tall. He gained one inch on his trial

G/F

> diet since November. He

> also really has no symptoms of Celiac, but

little

> sister is a Celiac. He is

> allowed to cheat sometimes on his diet since

he is

> asymptomatic, however I

> am keeping an eye on his behavior since

cheating. He

> started with some

> garlic bread last night and an In & Out

burger

> today. No behavioral or

> physical symptoms in the least. We're not

sure he is

> Celiac, but since he

> grew and inch in just about 10 weeks, we're

> considering he might be. He

> will be back to a complete GF diet starting

tomorrow

> for several more

> months. Then after 6 months they will draw

some

> blood. Our GI said it was no

> use poking him since he grew the

inch--something he

> hardly ever does! He's

> the size of an average 5 year old--that is

tiny!

>

>

>

>

>

>

Link to comment
Share on other sites

Hi Eileen,

Best wishes. What I want to hear about

later (in addition to anything you want to tell us) is whether you find that a

GF diet cures any “symptoms” you and your daughter never noticed or

have attributed to something else. For instance, I wonder if her focus will

improve. (mine has…) Hoping…

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Eileen Goldman

Sent: Sunday, January 22, 2006

10:12 PM

To: SillyYaks

Subject: RE: Hi and

Thanks

My newly diagnosed (4 days

ago) daughter is twleve,

and her only symptom is " failure to

thrive " . She is

almost 13, weights only 58 pounds, and is only 4

feet

5 inches. She is also ADHD, and it was thanks

to the

dr. prescribing her ritalin that we ended up with

her

diagnosis. He refused to give her more

ritalin until

we figured out that it wasnt the cause of her

delayed

growth. So off we went for a series of blood

tests.

You can guess the rest....I am being tested

tommorrow.

I am very glad to hear that quick growth is

possible

on the diet, since the doctors tell me that once

she

starts menstruating, she will not grow any taller!

This definitley generated a sense of

urgency. My

biggest concern is that since she is asymptomatic

in

terms of stomach discomfort, etc., she is less

motivated to stay on the diet, but she is

motivated to

get taller, so we'll see!

So glad this board exists, as I have been lurking

for

4 days now and picked up lots of good

information....

Eileen

--- & Mike

wrote:

>

> " For those of you that have

children with cd... did

> your child have growth

> issues? That is Mattie's only symptom

of cd that we

> know of.. his poor

> growth. He is 6 1/2 and weighs 42 lbs

and is 43

> inches tall. Little guy. "

>

> My 8 1/2 year old is also really small. He

just

> weighs 48 pounds and is 46

> inches tall. He gained one inch on his trial

G/F

> diet since November. He

> also really has no symptoms of Celiac, but

little

> sister is a Celiac. He is

> allowed to cheat sometimes on his diet since

he is

> asymptomatic, however I

> am keeping an eye on his behavior since

cheating. He

> started with some

> garlic bread last night and an In & Out

burger

> today. No behavioral or

> physical symptoms in the least. We're not

sure he is

> Celiac, but since he

> grew and inch in just about 10 weeks, we're

> considering he might be. He

> will be back to a complete GF diet starting

tomorrow

> for several more

> months. Then after 6 months they will draw

some

> blood. Our GI said it was no

> use poking him since he grew the

inch--something he

> hardly ever does! He's

> the size of an average 5 year old--that is

tiny!

>

>

>

>

>

>

Link to comment
Share on other sites

Sally,

My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was

diagnosed 2 years ago due to his low growth percentiles (for height). The first

year GF he grew about 3 inches (double what he had done the year before) and his

percentiles went from 3rd to 10th. The doctor said this was good. Since then

however - in the last year - I think he has only grown 2 inches. He doesnt see

the GI again until June so we have to wait. It concerns me though. Since lack

of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see

a big growth spurt. I do need to mention though that I am of Peruvian decent

and all of my family is very short - maybe he just got the short gene from me.

He was also tested for growth hormone deficiency (before we knew it was CD) and

this was negative. I know because he is a boy it is harder for me to see him

always being the smallest in the class. It's getting hard for him too. His

sister is 22 months younger than him and just as tall. Everywhere we go I get

asked if they are twins (they look a lot alike). I guess we just have to

continue to be patient. It is hard though. I hope you see better results.

Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just

wanted to say thanks to all who emailed and responded to my questions

re: what foods to buy first. And... great suggestion from whomever

wrote and said try not to replace his favorites with faux gluten free.

We are trying so many new foods with him (Mattie has lots of sensory

issues with food so I was so hesitant to do this) and so far so good.

Still haven't found a good substitute for white bread but I haven't

order the kinnikinick? bread yet or made my own, just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to order chinese friday

night. We had them make his former favorite chicken lo mein without the

noodles and the cook promised not to " cross contaminate " but I realized

later that the sauce most likely had soy sauce in it and probably not

GF. Oh well, live and learn. Mattie has never had any intestinal

reaction to gluten that we know of so we will just be careful next time.

I have a few questions of course. For those of you that have children

with cd... did your child have growth issues? That is Mattie's only

symptom of cd that we know of.. his poor growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come

from very tall families both of us have brothers that are 6'6 " so we

have been trying to figure this out for awhile now. Anyway... I was

wondering how long did it take before you saw a big change in growth?

I am hoping to see some changes in 6 months or is that unrealistic?

Also, how common is it that cd is genetic and is passed from the

parent to child? My husband and I have not been " tested " yet.. our dr's

want us to see them before ordering the bloodwork, trying to schedule

that. We have 3 kids... our 4 1/2 year old was tested and was

negative, our 9 month old won't be tested until she is at least 2.

TMI, right??? Anyway... things are going well, just feel like I have

to plan my meals so much more in advance but can honestly say he is

handling it as best as we could expect. Thanks again for all the great

ideas and advice,

Sally

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Share on other sites

Sally,

My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was

diagnosed 2 years ago due to his low growth percentiles (for height). The first

year GF he grew about 3 inches (double what he had done the year before) and his

percentiles went from 3rd to 10th. The doctor said this was good. Since then

however - in the last year - I think he has only grown 2 inches. He doesnt see

the GI again until June so we have to wait. It concerns me though. Since lack

of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see

a big growth spurt. I do need to mention though that I am of Peruvian decent

and all of my family is very short - maybe he just got the short gene from me.

He was also tested for growth hormone deficiency (before we knew it was CD) and

this was negative. I know because he is a boy it is harder for me to see him

always being the smallest in the class. It's getting hard for him too. His

sister is 22 months younger than him and just as tall. Everywhere we go I get

asked if they are twins (they look a lot alike). I guess we just have to

continue to be patient. It is hard though. I hope you see better results.

Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just

wanted to say thanks to all who emailed and responded to my questions

re: what foods to buy first. And... great suggestion from whomever

wrote and said try not to replace his favorites with faux gluten free.

We are trying so many new foods with him (Mattie has lots of sensory

issues with food so I was so hesitant to do this) and so far so good.

Still haven't found a good substitute for white bread but I haven't

order the kinnikinick? bread yet or made my own, just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to order chinese friday

night. We had them make his former favorite chicken lo mein without the

noodles and the cook promised not to " cross contaminate " but I realized

later that the sauce most likely had soy sauce in it and probably not

GF. Oh well, live and learn. Mattie has never had any intestinal

reaction to gluten that we know of so we will just be careful next time.

I have a few questions of course. For those of you that have children

with cd... did your child have growth issues? That is Mattie's only

symptom of cd that we know of.. his poor growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come

from very tall families both of us have brothers that are 6'6 " so we

have been trying to figure this out for awhile now. Anyway... I was

wondering how long did it take before you saw a big change in growth?

I am hoping to see some changes in 6 months or is that unrealistic?

Also, how common is it that cd is genetic and is passed from the

parent to child? My husband and I have not been " tested " yet.. our dr's

want us to see them before ordering the bloodwork, trying to schedule

that. We have 3 kids... our 4 1/2 year old was tested and was

negative, our 9 month old won't be tested until she is at least 2.

TMI, right??? Anyway... things are going well, just feel like I have

to plan my meals so much more in advance but can honestly say he is

handling it as best as we could expect. Thanks again for all the great

ideas and advice,

Sally

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Share on other sites

Sally,

My son is also 6 1/2 and weighs 46 lbs and is only 43 inches tall. He was

diagnosed 2 years ago due to his low growth percentiles (for height). The first

year GF he grew about 3 inches (double what he had done the year before) and his

percentiles went from 3rd to 10th. The doctor said this was good. Since then

however - in the last year - I think he has only grown 2 inches. He doesnt see

the GI again until June so we have to wait. It concerns me though. Since lack

of growth was his only CD symptom and my husband is 6ft tall, I thought we'd see

a big growth spurt. I do need to mention though that I am of Peruvian decent

and all of my family is very short - maybe he just got the short gene from me.

He was also tested for growth hormone deficiency (before we knew it was CD) and

this was negative. I know because he is a boy it is harder for me to see him

always being the smallest in the class. It's getting hard for him too. His

sister is 22 months younger than him and just as tall. Everywhere we go I get

asked if they are twins (they look a lot alike). I guess we just have to

continue to be patient. It is hard though. I hope you see better results.

Hi and Thanks

Hi,

This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just

wanted to say thanks to all who emailed and responded to my questions

re: what foods to buy first. And... great suggestion from whomever

wrote and said try not to replace his favorites with faux gluten free.

We are trying so many new foods with him (Mattie has lots of sensory

issues with food so I was so hesitant to do this) and so far so good.

Still haven't found a good substitute for white bread but I haven't

order the kinnikinick? bread yet or made my own, just tryed whole

foods, and ener-g.

My only mistake I think I have made so far was to order chinese friday

night. We had them make his former favorite chicken lo mein without the

noodles and the cook promised not to " cross contaminate " but I realized

later that the sauce most likely had soy sauce in it and probably not

GF. Oh well, live and learn. Mattie has never had any intestinal

reaction to gluten that we know of so we will just be careful next time.

I have a few questions of course. For those of you that have children

with cd... did your child have growth issues? That is Mattie's only

symptom of cd that we know of.. his poor growth. He is 6 1/2 and

weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come

from very tall families both of us have brothers that are 6'6 " so we

have been trying to figure this out for awhile now. Anyway... I was

wondering how long did it take before you saw a big change in growth?

I am hoping to see some changes in 6 months or is that unrealistic?

Also, how common is it that cd is genetic and is passed from the

parent to child? My husband and I have not been " tested " yet.. our dr's

want us to see them before ordering the bloodwork, trying to schedule

that. We have 3 kids... our 4 1/2 year old was tested and was

negative, our 9 month old won't be tested until she is at least 2.

TMI, right??? Anyway... things are going well, just feel like I have

to plan my meals so much more in advance but can honestly say he is

handling it as best as we could expect. Thanks again for all the great

ideas and advice,

Sally

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Share on other sites

Sally, my daughter was diagnosed 2 years ago with CD. At the time, she was 5 1/2 and was 43 in. and weighed 43 lbs. Now, 2 years later, at 7 1/2, she is 47 in. and 50 lbs. She is still the smallest in her class, but she has been steadily growing. The doctor said she was in the 25th percentile for her height and weight. I think 6 months is too soon to see a huge growth spurt, but he will probably grow a couple of inches in that time, and will continue to steadily improve.

Lorie

Winter Haven, FL

Hi and Thanks

Hi,This is Sally, mom to Mattie with cd diagnosed 3 weeks ago. Just wanted to say thanks to all who emailed and responded to my questions re: what foods to buy first. And... great suggestion from whomever wrote and said try not to replace his favorites with faux gluten free. We are trying so many new foods with him (Mattie has lots of sensory issues with food so I was so hesitant to do this) and so far so good. Still haven't found a good substitute for white bread but I haven't order the kinnikinick? bread yet or made my own, just tryed whole foods, and ener-g.My only mistake I think I have made so far was to order chinese friday night. We had them make his former favorite chicken lo mein without the noodles and the cook promised not to "cross contaminate" but I realized later that the sauce most likely had soy sauce in it and probably not GF. Oh well, live and learn. Mattie has never had any intestinal reaction to gluten that we know of so we will just be careful next time.I have a few questions of course. For those of you that have children with cd... did your child have growth issues? That is Mattie's only symptom of cd that we know of.. his poor growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall. Little guy. My husband and I come from very tall families both of us have brothers that are 6'6" so we have been trying to figure this out for awhile now. Anyway... I was wondering how long did it take before you saw a big change in growth? I am hoping to see some changes in 6 months or is that unrealistic?Also, how common is it that cd is genetic and is passed from the parent to child? My husband and I have not been "tested" yet.. our dr's want us to see them before ordering the bloodwork, trying to schedule that. We have 3 kids... our 4 1/2 year old was tested and was negative, our 9 month old won't be tested until she is at least 2. TMI, right??? Anyway... things are going well, just feel like I have to plan my meals so much more in advance but can honestly say he is handling it as best as we could expect. Thanks again for all the great ideas and advice,Sally

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Share on other sites

Yes, my son had growth problems, in fact, that was his only symptom,

he was diagnosed just before his 15th birthday. When he was 10

years old, he was in the 75th percentile for height, 25th percentile

for weight; by the time he was 14 and a half, he was 25th percentile

for height, 5th percentile for weight. When diagnosed, he was 5'4 "

and weighted 90 pounds. He has been on a gluten diet since April of

2005 with great results. Allowing that it took 3 months for his

villa to recover, over the subsequent 18 months, he has gained over

6 inches in height and over 32 pounds in weight, and his doctor

believes he should be able to achieve all the growth he is capable

of realizing.

He's pretty athlethic and plays on his HS's varsity team. Again, no

symptoms other than lack of growth. We took him to an

endocronologist thinking he needed a blast of testosterone to kick

start puberty. Fortunately, in the blood tests for testosterone

level, the endo also screened for celiac markers. My son tested

high positive and the subsequent biospy confirmed the diagnosis.

Not sure when the celiac reaction kicked in, looking at his growth

chart, his weight percentile starting dropping around 9 yo, his

height around 10 yo.

I wanted to explain the circumstances of my son's diagnosis so that

if folks encounter a similar set of circumstances, they can alert

parents to screen for celiac. Over this period, a lot of folks we

encounted cited anecdotal instances such as " oh, when I was a kid in

HS, I was real short, and then grew 6 inches when I turned 17, so

I'm not sure you should be all that worried that you son is not

growing, it's not uncommon " . And yes, while that may be a fairly

accurate statement, that is, some kids do stop growing and are late

blommers, given that all you need to do is get a blood test, if you

know of adolelescents who have really stopped growing, I would

suggest the parents have the kids screened for celiac. In fact, at

the UM Baltimore Celiac center, the nutritutionist say if a child

experiences more than a 10% drop on the growth chart for height, a

blood test should be conducted.

As always, thanks to you Melonie, great site, I check it all the

time, very helpful.

Art

>

>

> " For those of you that have children with cd... did your child

have growth

> issues? That is Mattie's only symptom of cd that we know of.. his

poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds

and is 46

> inches tall. He gained one inch on his trial G/F diet since

November. He

> also really has no symptoms of Celiac, but little sister is a

Celiac. He is

> allowed to cheat sometimes on his diet since he is asymptomatic,

however I

> am keeping an eye on his behavior since cheating. He started with

some

> garlic bread last night and an In & Out burger today. No

behavioral or

> physical symptoms in the least. We're not sure he is Celiac, but

since he

> grew and inch in just about 10 weeks, we're considering he might

be. He

> will be back to a complete GF diet starting tomorrow for several

more

> months. Then after 6 months they will draw some blood. Our GI said

it was no

> use poking him since he grew the inch--something he hardly ever

does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

Link to comment
Share on other sites

Yes, my son had growth problems, in fact, that was his only symptom,

he was diagnosed just before his 15th birthday. When he was 10

years old, he was in the 75th percentile for height, 25th percentile

for weight; by the time he was 14 and a half, he was 25th percentile

for height, 5th percentile for weight. When diagnosed, he was 5'4 "

and weighted 90 pounds. He has been on a gluten diet since April of

2005 with great results. Allowing that it took 3 months for his

villa to recover, over the subsequent 18 months, he has gained over

6 inches in height and over 32 pounds in weight, and his doctor

believes he should be able to achieve all the growth he is capable

of realizing.

He's pretty athlethic and plays on his HS's varsity team. Again, no

symptoms other than lack of growth. We took him to an

endocronologist thinking he needed a blast of testosterone to kick

start puberty. Fortunately, in the blood tests for testosterone

level, the endo also screened for celiac markers. My son tested

high positive and the subsequent biospy confirmed the diagnosis.

Not sure when the celiac reaction kicked in, looking at his growth

chart, his weight percentile starting dropping around 9 yo, his

height around 10 yo.

I wanted to explain the circumstances of my son's diagnosis so that

if folks encounter a similar set of circumstances, they can alert

parents to screen for celiac. Over this period, a lot of folks we

encounted cited anecdotal instances such as " oh, when I was a kid in

HS, I was real short, and then grew 6 inches when I turned 17, so

I'm not sure you should be all that worried that you son is not

growing, it's not uncommon " . And yes, while that may be a fairly

accurate statement, that is, some kids do stop growing and are late

blommers, given that all you need to do is get a blood test, if you

know of adolelescents who have really stopped growing, I would

suggest the parents have the kids screened for celiac. In fact, at

the UM Baltimore Celiac center, the nutritutionist say if a child

experiences more than a 10% drop on the growth chart for height, a

blood test should be conducted.

As always, thanks to you Melonie, great site, I check it all the

time, very helpful.

Art

>

>

> " For those of you that have children with cd... did your child

have growth

> issues? That is Mattie's only symptom of cd that we know of.. his

poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds

and is 46

> inches tall. He gained one inch on his trial G/F diet since

November. He

> also really has no symptoms of Celiac, but little sister is a

Celiac. He is

> allowed to cheat sometimes on his diet since he is asymptomatic,

however I

> am keeping an eye on his behavior since cheating. He started with

some

> garlic bread last night and an In & Out burger today. No

behavioral or

> physical symptoms in the least. We're not sure he is Celiac, but

since he

> grew and inch in just about 10 weeks, we're considering he might

be. He

> will be back to a complete GF diet starting tomorrow for several

more

> months. Then after 6 months they will draw some blood. Our GI said

it was no

> use poking him since he grew the inch--something he hardly ever

does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

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Yes, my son had growth problems, in fact, that was his only symptom,

he was diagnosed just before his 15th birthday. When he was 10

years old, he was in the 75th percentile for height, 25th percentile

for weight; by the time he was 14 and a half, he was 25th percentile

for height, 5th percentile for weight. When diagnosed, he was 5'4 "

and weighted 90 pounds. He has been on a gluten diet since April of

2005 with great results. Allowing that it took 3 months for his

villa to recover, over the subsequent 18 months, he has gained over

6 inches in height and over 32 pounds in weight, and his doctor

believes he should be able to achieve all the growth he is capable

of realizing.

He's pretty athlethic and plays on his HS's varsity team. Again, no

symptoms other than lack of growth. We took him to an

endocronologist thinking he needed a blast of testosterone to kick

start puberty. Fortunately, in the blood tests for testosterone

level, the endo also screened for celiac markers. My son tested

high positive and the subsequent biospy confirmed the diagnosis.

Not sure when the celiac reaction kicked in, looking at his growth

chart, his weight percentile starting dropping around 9 yo, his

height around 10 yo.

I wanted to explain the circumstances of my son's diagnosis so that

if folks encounter a similar set of circumstances, they can alert

parents to screen for celiac. Over this period, a lot of folks we

encounted cited anecdotal instances such as " oh, when I was a kid in

HS, I was real short, and then grew 6 inches when I turned 17, so

I'm not sure you should be all that worried that you son is not

growing, it's not uncommon " . And yes, while that may be a fairly

accurate statement, that is, some kids do stop growing and are late

blommers, given that all you need to do is get a blood test, if you

know of adolelescents who have really stopped growing, I would

suggest the parents have the kids screened for celiac. In fact, at

the UM Baltimore Celiac center, the nutritutionist say if a child

experiences more than a 10% drop on the growth chart for height, a

blood test should be conducted.

As always, thanks to you Melonie, great site, I check it all the

time, very helpful.

Art

>

>

> " For those of you that have children with cd... did your child

have growth

> issues? That is Mattie's only symptom of cd that we know of.. his

poor

> growth. He is 6 1/2 and weighs 42 lbs and is 43 inches tall.

Little guy. "

>

> My 8 1/2 year old is also really small. He just weighs 48 pounds

and is 46

> inches tall. He gained one inch on his trial G/F diet since

November. He

> also really has no symptoms of Celiac, but little sister is a

Celiac. He is

> allowed to cheat sometimes on his diet since he is asymptomatic,

however I

> am keeping an eye on his behavior since cheating. He started with

some

> garlic bread last night and an In & Out burger today. No

behavioral or

> physical symptoms in the least. We're not sure he is Celiac, but

since he

> grew and inch in just about 10 weeks, we're considering he might

be. He

> will be back to a complete GF diet starting tomorrow for several

more

> months. Then after 6 months they will draw some blood. Our GI said

it was no

> use poking him since he grew the inch--something he hardly ever

does! He's

> the size of an average 5 year old--that is tiny!

>

>

>

>

>

>

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Share on other sites

Sally,

My son, who will be 15 next week, was diagnosed a year ago last

October. At the time of diagnosis (almost 14), he was 75 pounds and

4'11 " , looking more like a 4-5th grader than an 8th grader. It was

actually his failure to grow that led to his diagnosis. Our ped was

also concerned about growth hormone deficiencies and tested him for

them as well as did an xray of his wrist. His most recent wrist xray

(last month) showed that his bone age was only 12. His growth hormone

levels were normal, but other hormone testing indicated that he was

just entering the 4th phase of puberty, the phase in which you are

supposed to grow. In the past month, he has finally started growing.

The pediatric endocrinologist said CD wouldn't likely affect his long-

term growth potential since it was diagnosed and managed before his

growth spurt occurred. My husband, who thinks he has had CD since he

was an adolescent, but has only been diagnosed in the past few years,

now wonders how tall he would have been had his CD been diagnosed as a

child!

My son is still is very thin and never has liked to eat, I guess from

having it make him feel awful all those years. It wasn't until he was

diagnosed that he realized that joint pain, indigestion, gassiness, and

nightmares ALL the time, weren't normal.

Despite being tiny, Marty is strong and athletic. He just hates being

treated like a mascot by his high school classmates. We keep telling

him that will change, and he keeps waiting.

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Share on other sites

Sally,

My son, who will be 15 next week, was diagnosed a year ago last

October. At the time of diagnosis (almost 14), he was 75 pounds and

4'11 " , looking more like a 4-5th grader than an 8th grader. It was

actually his failure to grow that led to his diagnosis. Our ped was

also concerned about growth hormone deficiencies and tested him for

them as well as did an xray of his wrist. His most recent wrist xray

(last month) showed that his bone age was only 12. His growth hormone

levels were normal, but other hormone testing indicated that he was

just entering the 4th phase of puberty, the phase in which you are

supposed to grow. In the past month, he has finally started growing.

The pediatric endocrinologist said CD wouldn't likely affect his long-

term growth potential since it was diagnosed and managed before his

growth spurt occurred. My husband, who thinks he has had CD since he

was an adolescent, but has only been diagnosed in the past few years,

now wonders how tall he would have been had his CD been diagnosed as a

child!

My son is still is very thin and never has liked to eat, I guess from

having it make him feel awful all those years. It wasn't until he was

diagnosed that he realized that joint pain, indigestion, gassiness, and

nightmares ALL the time, weren't normal.

Despite being tiny, Marty is strong and athletic. He just hates being

treated like a mascot by his high school classmates. We keep telling

him that will change, and he keeps waiting.

Link to comment
Share on other sites

Sally,

My son, who will be 15 next week, was diagnosed a year ago last

October. At the time of diagnosis (almost 14), he was 75 pounds and

4'11 " , looking more like a 4-5th grader than an 8th grader. It was

actually his failure to grow that led to his diagnosis. Our ped was

also concerned about growth hormone deficiencies and tested him for

them as well as did an xray of his wrist. His most recent wrist xray

(last month) showed that his bone age was only 12. His growth hormone

levels were normal, but other hormone testing indicated that he was

just entering the 4th phase of puberty, the phase in which you are

supposed to grow. In the past month, he has finally started growing.

The pediatric endocrinologist said CD wouldn't likely affect his long-

term growth potential since it was diagnosed and managed before his

growth spurt occurred. My husband, who thinks he has had CD since he

was an adolescent, but has only been diagnosed in the past few years,

now wonders how tall he would have been had his CD been diagnosed as a

child!

My son is still is very thin and never has liked to eat, I guess from

having it make him feel awful all those years. It wasn't until he was

diagnosed that he realized that joint pain, indigestion, gassiness, and

nightmares ALL the time, weren't normal.

Despite being tiny, Marty is strong and athletic. He just hates being

treated like a mascot by his high school classmates. We keep telling

him that will change, and he keeps waiting.

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