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Re: How quickly can we see progress?

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Our daughter with Celiac was diagnosed at age 2. She was completely off the charts and Failure to Thrive. Nina wore the same clothes size for a whole year! Once on the gluten free diet she began to make steady progress onto the charts. It did not happen overnight. With our physicians approval we used PediaSure and tried to use whole milk yogurt (Stoneyfield Farms Yo Baby) and full fat dairy product once she got over her initial healing period.

Twelve months later she was fully on the charts for height and weight and now almost three years later she is in the 50 th % both for height and weight. She now weighs the same as our six year old and is almost as tall. When kids are so far off the charts it takes time to recoup. Our doctor told us they lose weight first then height then head circumference. When they gain it back they gain weight then height then head size.

Glad to hear your daughter is doing well now!

Dabney

Mom to two beautiful Russian angels, Katya 6, Perm Russia, Nina 4, Tver Russia, a little prince Evan, 2 and a baby girl Ella 4 months

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Congratulations -- it sounds like you are finally seeing the light

at the end of the tunnel! Please never forget that learning a GF

diet is difficult and ongoing, and don't let yourself get down

because of an occasional accident or slip. Some benefits are

immediate, some gradual, but remind yourself that simply by knowing

to put your child on the GF diet, you may have saved her life, at

least added many, many long healthy years.

When our son, then 4, first began the GF diet, he immediately gained

2 lbs, but then no more for about 6 mo. After that, we had

a " weight goal " with the ped, to gain back the remaining 2 lbs he

had lost plus 3 more over a 7 mo. period (before he started

school). I'm happy to say he starts school next week and has gained

7 lbs. I think it took several months for his intestines to repair,

then the weight was able to stay on.

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Thank you everyone for their responses.

I have gone through the whole emotional rollercoaster after having my

daughter diagnosed. She was labeled with failure to thrive at 6

months (before any gluten was added to her diet unless it was in the

antibiotics) and from 6 months until 26 months the doctor and I went

back and forth over being concerned about her. At 6 months he wanted

me to add formula to her diet since I was exclusively breastfeeding

her but I did not feel that was the best thing. I did work with a

lactation consultant on a very ongoing basis and checked her weight

regularly to make sure she was gaining weight like she should.

At 26 months I had finally got some hope that we could spend more

time out of the doctor's office than in it as we were due to have our

fourth child about 2 months after diagnosis.

The diet has brought many changes that others are even seeing in her

and comment regularly on! However the weight is not coming as

quickly as it seems it should. I however do not want to get caught

up on her weight and stress out over it to the point the other

progress is not seen. She is gaining weight but it is just slow.

We have her on whole milk, offer high fat foods like puddings and

icecream, she really loves cheese, and try to pack extra calories in

her diet naturally. One lady wanted me to put oil in her cereal and

to add butter to all of her foods. I do use oil to do things like

fry an egg for her or things that " naturally " have it and I add

butter to things that one would normally too such as veggies and

foods that it might help the taste. However I will not add things

that do not normally have it in it.

She is also on Pediasure and loves it. We have her on 2 a day and if

she does not eat well for a couple of days we will boost it up to 3

and if she is feeling under the weather we will give her as many as 4

but we try to keep her balanced at 2. Also if she is eating really

well and doesn't seem to need the Pediasure we do not use it. But I

know it is an easy way to get some weight on her and some extra

calories with the nutrients that she needs.

Can you avoid the grain products with out causing any damage to her?

Thanks for your help.

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Thank you everyone for their responses.

I have gone through the whole emotional rollercoaster after having my

daughter diagnosed. She was labeled with failure to thrive at 6

months (before any gluten was added to her diet unless it was in the

antibiotics) and from 6 months until 26 months the doctor and I went

back and forth over being concerned about her. At 6 months he wanted

me to add formula to her diet since I was exclusively breastfeeding

her but I did not feel that was the best thing. I did work with a

lactation consultant on a very ongoing basis and checked her weight

regularly to make sure she was gaining weight like she should.

At 26 months I had finally got some hope that we could spend more

time out of the doctor's office than in it as we were due to have our

fourth child about 2 months after diagnosis.

The diet has brought many changes that others are even seeing in her

and comment regularly on! However the weight is not coming as

quickly as it seems it should. I however do not want to get caught

up on her weight and stress out over it to the point the other

progress is not seen. She is gaining weight but it is just slow.

We have her on whole milk, offer high fat foods like puddings and

icecream, she really loves cheese, and try to pack extra calories in

her diet naturally. One lady wanted me to put oil in her cereal and

to add butter to all of her foods. I do use oil to do things like

fry an egg for her or things that " naturally " have it and I add

butter to things that one would normally too such as veggies and

foods that it might help the taste. However I will not add things

that do not normally have it in it.

She is also on Pediasure and loves it. We have her on 2 a day and if

she does not eat well for a couple of days we will boost it up to 3

and if she is feeling under the weather we will give her as many as 4

but we try to keep her balanced at 2. Also if she is eating really

well and doesn't seem to need the Pediasure we do not use it. But I

know it is an easy way to get some weight on her and some extra

calories with the nutrients that she needs.

Can you avoid the grain products with out causing any damage to her?

Thanks for your help.

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Thank you everyone for their responses.

I have gone through the whole emotional rollercoaster after having my

daughter diagnosed. She was labeled with failure to thrive at 6

months (before any gluten was added to her diet unless it was in the

antibiotics) and from 6 months until 26 months the doctor and I went

back and forth over being concerned about her. At 6 months he wanted

me to add formula to her diet since I was exclusively breastfeeding

her but I did not feel that was the best thing. I did work with a

lactation consultant on a very ongoing basis and checked her weight

regularly to make sure she was gaining weight like she should.

At 26 months I had finally got some hope that we could spend more

time out of the doctor's office than in it as we were due to have our

fourth child about 2 months after diagnosis.

The diet has brought many changes that others are even seeing in her

and comment regularly on! However the weight is not coming as

quickly as it seems it should. I however do not want to get caught

up on her weight and stress out over it to the point the other

progress is not seen. She is gaining weight but it is just slow.

We have her on whole milk, offer high fat foods like puddings and

icecream, she really loves cheese, and try to pack extra calories in

her diet naturally. One lady wanted me to put oil in her cereal and

to add butter to all of her foods. I do use oil to do things like

fry an egg for her or things that " naturally " have it and I add

butter to things that one would normally too such as veggies and

foods that it might help the taste. However I will not add things

that do not normally have it in it.

She is also on Pediasure and loves it. We have her on 2 a day and if

she does not eat well for a couple of days we will boost it up to 3

and if she is feeling under the weather we will give her as many as 4

but we try to keep her balanced at 2. Also if she is eating really

well and doesn't seem to need the Pediasure we do not use it. But I

know it is an easy way to get some weight on her and some extra

calories with the nutrients that she needs.

Can you avoid the grain products with out causing any damage to her?

Thanks for your help.

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>>Can you avoid the grain products with out causing any damage to her?<<

I am confused what you meant by this? You don't have to avoid " grain products " ,

you can still give those products to her, just made wiht a different

" flour-base " .

________________________________

From: Holly

Sent: Thu 8/26/2004 7:58 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

Thank you everyone for their responses.

I have gone through the whole emotional rollercoaster after having my

daughter diagnosed. She was labeled with failure to thrive at 6

months (before any gluten was added to her diet unless it was in the

antibiotics) and from 6 months until 26 months the doctor and I went

back and forth over being concerned about her. At 6 months he wanted

me to add formula to her diet since I was exclusively breastfeeding

her but I did not feel that was the best thing. I did work with a

lactation consultant on a very ongoing basis and checked her weight

regularly to make sure she was gaining weight like she should.

At 26 months I had finally got some hope that we could spend more

time out of the doctor's office than in it as we were due to have our

fourth child about 2 months after diagnosis.

The diet has brought many changes that others are even seeing in her

and comment regularly on! However the weight is not coming as

quickly as it seems it should. I however do not want to get caught

up on her weight and stress out over it to the point the other

progress is not seen. She is gaining weight but it is just slow.

We have her on whole milk, offer high fat foods like puddings and

icecream, she really loves cheese, and try to pack extra calories in

her diet naturally. One lady wanted me to put oil in her cereal and

to add butter to all of her foods. I do use oil to do things like

fry an egg for her or things that " naturally " have it and I add

butter to things that one would normally too such as veggies and

foods that it might help the taste. However I will not add things

that do not normally have it in it.

She is also on Pediasure and loves it. We have her on 2 a day and if

she does not eat well for a couple of days we will boost it up to 3

and if she is feeling under the weather we will give her as many as 4

but we try to keep her balanced at 2. Also if she is eating really

well and doesn't seem to need the Pediasure we do not use it. But I

know it is an easy way to get some weight on her and some extra

calories with the nutrients that she needs.

Can you avoid the grain products with out causing any damage to her?

Thanks for your help.

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Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Holly,

My Pedi GI Specialist told me that we'd see how my son did for a couple weeks,

and if there was no improvement we would introduce the Pediasure. And he's one

of the top pedi. CD guys in the country, so I trust him completely. So, I don't

know what that lady was thinking but it wasn't accurate. I mean, she's right,

you shouldn't use it in place of real food but I seriously doubt that was what

you were planning. I love people. They mean well, but sometimes don't you just

want to look them in the eyes and say " butt out " ? Sigh.

Bridget

________________________________

From: Holly

Sent: Thu 8/26/2004 8:47 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Holly,

My Pedi GI Specialist told me that we'd see how my son did for a couple weeks,

and if there was no improvement we would introduce the Pediasure. And he's one

of the top pedi. CD guys in the country, so I trust him completely. So, I don't

know what that lady was thinking but it wasn't accurate. I mean, she's right,

you shouldn't use it in place of real food but I seriously doubt that was what

you were planning. I love people. They mean well, but sometimes don't you just

want to look them in the eyes and say " butt out " ? Sigh.

Bridget

________________________________

From: Holly

Sent: Thu 8/26/2004 8:47 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Holly,

My Pedi GI Specialist told me that we'd see how my son did for a couple weeks,

and if there was no improvement we would introduce the Pediasure. And he's one

of the top pedi. CD guys in the country, so I trust him completely. So, I don't

know what that lady was thinking but it wasn't accurate. I mean, she's right,

you shouldn't use it in place of real food but I seriously doubt that was what

you were planning. I love people. They mean well, but sometimes don't you just

want to look them in the eyes and say " butt out " ? Sigh.

Bridget

________________________________

From: Holly

Sent: Thu 8/26/2004 8:47 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

Priscilla,

Thank you for your response. I am able to get the Pediasure through

the WIC program and that is who they have a contract through so that

is what I use. I have also used the store brands a couple of times.

One lady told me that I should not be using Pediasure at all but

isn't it a good nutritional suplement when she has not been absorbing

her foods for so long?

It has been an emotional roller coaster and a long haul to finally

get a diagnosis. I am so thankful that we got an answer before our

last baby was born! He is 3 months and over half her weight! It

amazes me the difference between our kids. We have had 4 kids and

the older three were small with our 2 year old being the smallest and

now we have one in the 50th percentile! What a change that is for

us!

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Tinkyada is the BEST GF pasta. I can hardly tell the difference, and even my

husband who swears he can tell the difference in everything likes this! Plus it

comes in a variety of shapes, so yippee!!!! Were you following the discussion

here re: Kraft Mac & Cheese, cheese? You can get it in a canister, but it's a

little costly and hard to find so many are just buying the box of Mac & Cheese

and using the cheese and not the pasta.

Cereals, my son likes the Envirokidz Gorilla Munch, it tastes and looks just

like Kix.

I found that GF bread, sliced a little thick, makes INCREDIBLE french toast. I

mean, really good. For some strange reason, even better than " real " bread. I

slice it into " sticks " and then dip it and fry it, and then my son has french

toast sticks to dip. He's a happy camper.

Have you tried the Manna from mix? It tastes like wheat bread, and it looks

and even feels just like " normal " bread. I don't know what she does differently

than the other companies, but wow.

________________________________

From: Holly

Sent: Thu 8/26/2004 8:54 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

She will not eat the gluten free breads at all and is picky about the

pastas. She does eat the Corn Pops but they are getting harder and

harder to find the Gluten Free ones since they have added flour in

their recipes now.

She will occasionally eat a Gluten Free pancake if there is enough

syrup on it. I try to make everything for the family Gluten Free for

the meals we eat together so she does not have to watch us eat foods

she would rather have.

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Tinkyada is the BEST GF pasta. I can hardly tell the difference, and even my

husband who swears he can tell the difference in everything likes this! Plus it

comes in a variety of shapes, so yippee!!!! Were you following the discussion

here re: Kraft Mac & Cheese, cheese? You can get it in a canister, but it's a

little costly and hard to find so many are just buying the box of Mac & Cheese

and using the cheese and not the pasta.

Cereals, my son likes the Envirokidz Gorilla Munch, it tastes and looks just

like Kix.

I found that GF bread, sliced a little thick, makes INCREDIBLE french toast. I

mean, really good. For some strange reason, even better than " real " bread. I

slice it into " sticks " and then dip it and fry it, and then my son has french

toast sticks to dip. He's a happy camper.

Have you tried the Manna from mix? It tastes like wheat bread, and it looks

and even feels just like " normal " bread. I don't know what she does differently

than the other companies, but wow.

________________________________

From: Holly

Sent: Thu 8/26/2004 8:54 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

She will not eat the gluten free breads at all and is picky about the

pastas. She does eat the Corn Pops but they are getting harder and

harder to find the Gluten Free ones since they have added flour in

their recipes now.

She will occasionally eat a Gluten Free pancake if there is enough

syrup on it. I try to make everything for the family Gluten Free for

the meals we eat together so she does not have to watch us eat foods

she would rather have.

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She will not eat the gluten free breads at all and is picky about the

pastas. She does eat the Corn Pops but they are getting harder and

harder to find the Gluten Free ones since they have added flour in

their recipes now.

She will occasionally eat a Gluten Free pancake if there is enough

syrup on it. I try to make everything for the family Gluten Free for

the meals we eat together so she does not have to watch us eat foods

she would rather have.

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Bridget,

I most certainly did not want to replace her food with Pediasure.

But this lady went on the attack and chose to tell me everything I

was and had ever done wrong! She also told me how it was one medical

crisis after another with her! Between her kidney problem that we

dealt with until we finally realized that she had something else

going on. She was suppose to be supportive in her roll with the WIC

program. I would certainly rather have her on " normal " food all the

time and have the diet thing down pat but also realize that it is

going to take time and there are going to be things she will not eat

for awhile. We have tried to provide safe foods for her and will

continue to do so and if she refuses them we know she will accept the

Pediasure. It is not a permanent fix but for now it is working and

she is getting better. Maybe not as fast as I would like but it is

working and she is not gaining and losing weight everytime we turn

around.

It is also making the transition easier since she can fill up on that

when she has a meal she will not eat since it is a safe food and we

do not have to cave to letting her eat unsafe food to get her to eat.

We have gotten rid of most of the glutten foods so she can get into

most anything to eat. Makes it easier on everyone to have a few

items she may not eat instead of stocking two whole pantrys.

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Bridget,

I most certainly did not want to replace her food with Pediasure.

But this lady went on the attack and chose to tell me everything I

was and had ever done wrong! She also told me how it was one medical

crisis after another with her! Between her kidney problem that we

dealt with until we finally realized that she had something else

going on. She was suppose to be supportive in her roll with the WIC

program. I would certainly rather have her on " normal " food all the

time and have the diet thing down pat but also realize that it is

going to take time and there are going to be things she will not eat

for awhile. We have tried to provide safe foods for her and will

continue to do so and if she refuses them we know she will accept the

Pediasure. It is not a permanent fix but for now it is working and

she is getting better. Maybe not as fast as I would like but it is

working and she is not gaining and losing weight everytime we turn

around.

It is also making the transition easier since she can fill up on that

when she has a meal she will not eat since it is a safe food and we

do not have to cave to letting her eat unsafe food to get her to eat.

We have gotten rid of most of the glutten foods so she can get into

most anything to eat. Makes it easier on everyone to have a few

items she may not eat instead of stocking two whole pantrys.

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Isn't it amazing how many people are 'experts' at raising other people's

children? It makes me so mad when people make idiots of themselves like that. I

feel bad for them, it must be hard not knowing what a fool you are!

My son, like your daughter, seemed to have a bi-weekly appointment with our

doctor. In fact, we were there a couple weeks ago for what I thought was an ear

infection...nope, sackie/hand,foot & mouth disease, ARGHHHH....and the nurse,

who I know and who's son goes to daycare with my son, picked up Brennan's file

and said, " Wow! Time to start a new volume here! " Yeah, it's pretty thick. So,

anyway, I'm hoping that now that his body is actually absorbing nutrients maybe

he'll be less sick!?

________________________________

From: Holly

Sent: Thu 8/26/2004 9:06 PM

To: SillyYaks

Subject: Re: How quickly can we see progress?

Bridget,

I most certainly did not want to replace her food with Pediasure.

But this lady went on the attack and chose to tell me everything I

was and had ever done wrong! She also told me how it was one medical

crisis after another with her! Between her kidney problem that we

dealt with until we finally realized that she had something else

going on. She was suppose to be supportive in her roll with the WIC

program. I would certainly rather have her on " normal " food all the

time and have the diet thing down pat but also realize that it is

going to take time and there are going to be things she will not eat

for awhile. We have tried to provide safe foods for her and will

continue to do so and if she refuses them we know she will accept the

Pediasure. It is not a permanent fix but for now it is working and

she is getting better. Maybe not as fast as I would like but it is

working and she is not gaining and losing weight everytime we turn

around.

It is also making the transition easier since she can fill up on that

when she has a meal she will not eat since it is a safe food and we

do not have to cave to letting her eat unsafe food to get her to eat.

We have gotten rid of most of the glutten foods so she can get into

most anything to eat. Makes it easier on everyone to have a few

items she may not eat instead of stocking two whole pantrys.

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Holly, have you checked out your older children for celiac disease? It is inherited. That could be one explanation for the difference in growth.

Jo Anne

Re: How quickly can we see progress?

Priscilla,Thank you for your response. I am able to get the Pediasure through the WIC program and that is who they have a contract through so that is what I use. I have also used the store brands a couple of times. One lady told me that I should not be using Pediasure at all but isn't it a good nutritional suplement when she has not been absorbing her foods for so long? It has been an emotional roller coaster and a long haul to finally get a diagnosis. I am so thankful that we got an answer before our last baby was born! He is 3 months and over half her weight! It amazes me the difference between our kids. We have had 4 kids and the older three were small with our 2 year old being the smallest and now we have one in the 50th percentile! What a change that is for us!

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Jo Anne,

We just got the kids and ourselves tested this week. I have not

heard any test results yet. I am hoping by tomorrow maybe.

The only one that will not be tested then is the baby and he is too

small for me to want to put him through a biopsy at this age and with

out him showing any symptoms. I will however keep him on a gluten

free diet longer and then we will have him tested after he is two. I

would rather start with a blood test and then see where to go from

there.

I am not sure I want to do much more than blood test since the

biopsies from our daughter that has been diagnosed came back

inconclusive.

Thanks for the sugestion though to get them tested. We decided to do

it before our deductible turns over again the 1st of September. It

seemd smarter to us to get it done than to just wait for symptoms to

show up. The doctor didn't seem to think it was necessary but we

finally just asked him to do it. He is great in working with us.

Also I told him I could not wait and wind up in a medical crisis with

another child!

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> She does eat the Corn Pops but they are getting harder and harder to

> find the Gluten Free ones since they have added flour in their recipes

> now.

Holly, Malt-o-Meal brand makes a cereal just like Corn Pops called Corn

Bursts and the ingredients are gluten free. Look for those in the

grocery store, they are the brand that comes in bags, not boxes. They

also make Cocoa Dino Bites and Fruity Dino Bites that are like chocolate

and fruity rice crispies.

God bless,

nn

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nn,

Thank you for another option for getting some more cereal she can

have! I was pretty discouraged to find out that Corn Pops were out!

I have still found a few boxes that are gluten free but they are

quickly running low with only one store having them in stock now!

Why would they decide to change the recipe after all this time?

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nn,

Thank you for another option for getting some more cereal she can

have! I was pretty discouraged to find out that Corn Pops were out!

I have still found a few boxes that are gluten free but they are

quickly running low with only one store having them in stock now!

Why would they decide to change the recipe after all this time?

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Personally I think that they added wheat starch, just to be able to say

that NONE of their cereals were gluten free. This solved the problem

of people complaining about getting contaminated by their cereals that

were supposedly gf. I think it stinks though that there are so many

cereals on the market that are off limits. And most of the gf ones are

either heavily sugar sweetened or bland as cardboard! Can't they make

a cereal gluten free without having to add tons of sugar or lose all

the flavor? :-(

God bless,

nn

Holly wrote:

nn,

Thank you for another option for getting some more cereal she can

have! I was pretty discouraged to find out that Corn Pops were out!

I have still found a few boxes that are gluten free but they are

quickly running low with only one store having them in stock now!

Why would they decide to change the recipe after all this time?

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My daughter and son went gf in May of this year. And, both of them because

of genetics were very big for their age. However, I have seen my daughter

grow considerably taller in the last few months and I attribute this to her

being able to absorb the nutrients she needs. I would venture to say she has

grown 3 inches total since may. Trully incredible what can happen on a gf

diet.

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