Questions about celiac testing
Melissa
Sorry for cross-posting, just wanted to catch every list I could
remember having the celiac discussion with.
Got the test results back today, and both boys are showing no food
allergy reactions at all. As mentioned, Dan has been getting daily
wheat for two months, so if it was a truly allergy, it would have
shown up. Doctor now wants to wait a year until he's older (because
older kids are more likely to react to blood test) and do a blood
test specific for celiac (which is kind of what I thought we were
doingGRRR!) He says to go ahead and follow our 'intuition', allowing
wheat however he feels comfortable. Sounds dangerous to me, he has
never shown signs of delayed growth because we stopped giving him
wheat at 9months. He does have all of the digestive signs, and
complains of pain in his arm and leg bones (much more than our other
kids have with growth pains)
What I've read is that it's imperative to just do a biopsy and get it
over with. Please, anyone have response? Thanks to all, feel free to
reply privately or back on the group.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
remember having the celiac discussion with.
Got the test results back today, and both boys are showing no food
allergy reactions at all. As mentioned, Dan has been getting daily
wheat for two months, so if it was a truly allergy, it would have
shown up. Doctor now wants to wait a year until he's older (because
older kids are more likely to react to blood test) and do a blood
test specific for celiac (which is kind of what I thought we were
doingGRRR!) He says to go ahead and follow our 'intuition', allowing
wheat however he feels comfortable. Sounds dangerous to me, he has
never shown signs of delayed growth because we stopped giving him
wheat at 9months. He does have all of the digestive signs, and
complains of pain in his arm and leg bones (much more than our other
kids have with growth pains)
What I've read is that it's imperative to just do a biopsy and get it
over with. Please, anyone have response? Thanks to all, feel free to
reply privately or back on the group.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
S Drag-teine
I have many friends and family with a large range of problems from diabetes
to skin problems and those include allergies. In my experience, sometimes
you have to take control of the situation. If the doctor isn't doing what
you want them to do it is best for you and your family that you find a
doctor who will. All insurances have a second opinion clause even if you
have to search for it and no distance is too far for your child's health.
This too I speak from experience - we drive half a day for my son's heart
check-ups (congenital heart runs in the family and he has to be checked
every six months).
Shannon
-----Original Message-----
From: [email protected]
[mailto:[email protected]] On Behalf Of Melissa
Sent: Friday, March 03, 2006 3:43 PM
To: [email protected];
[email protected]; Vickie L. ((HSC)) Loemker;
[email protected]
Subject: [unschoolingbasics] Questions about celiac testing
Sorry for cross-posting, just wanted to catch every list I could
remember having the celiac discussion with.
Got the test results back today, and both boys are showing no food
allergy reactions at all. As mentioned, Dan has been getting daily
wheat for two months, so if it was a truly allergy, it would have
shown up. Doctor now wants to wait a year until he's older (because
older kids are more likely to react to blood test) and do a blood
test specific for celiac (which is kind of what I thought we were
doingGRRR!) He says to go ahead and follow our 'intuition', allowing
wheat however he feels comfortable. Sounds dangerous to me, he has
never shown signs of delayed growth because we stopped giving him
wheat at 9months. He does have all of the digestive signs, and
complains of pain in his arm and leg bones (much more than our other
kids have with growth pains)
What I've read is that it's imperative to just do a biopsy and get it
over with. Please, anyone have response? Thanks to all, feel free to
reply privately or back on the group.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
Yahoo! Groups Links
to skin problems and those include allergies. In my experience, sometimes
you have to take control of the situation. If the doctor isn't doing what
you want them to do it is best for you and your family that you find a
doctor who will. All insurances have a second opinion clause even if you
have to search for it and no distance is too far for your child's health.
This too I speak from experience - we drive half a day for my son's heart
check-ups (congenital heart runs in the family and he has to be checked
every six months).
Shannon
-----Original Message-----
From: [email protected]
[mailto:[email protected]] On Behalf Of Melissa
Sent: Friday, March 03, 2006 3:43 PM
To: [email protected];
[email protected]; Vickie L. ((HSC)) Loemker;
[email protected]
Subject: [unschoolingbasics] Questions about celiac testing
Sorry for cross-posting, just wanted to catch every list I could
remember having the celiac discussion with.
Got the test results back today, and both boys are showing no food
allergy reactions at all. As mentioned, Dan has been getting daily
wheat for two months, so if it was a truly allergy, it would have
shown up. Doctor now wants to wait a year until he's older (because
older kids are more likely to react to blood test) and do a blood
test specific for celiac (which is kind of what I thought we were
doingGRRR!) He says to go ahead and follow our 'intuition', allowing
wheat however he feels comfortable. Sounds dangerous to me, he has
never shown signs of delayed growth because we stopped giving him
wheat at 9months. He does have all of the digestive signs, and
complains of pain in his arm and leg bones (much more than our other
kids have with growth pains)
What I've read is that it's imperative to just do a biopsy and get it
over with. Please, anyone have response? Thanks to all, feel free to
reply privately or back on the group.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
Yahoo! Groups Links
Nicole Willoughby
Even with a biopsy its not uncommon for a false negative to appear untill wheat is part of the daily diet for as much as 6 months.
My son tested negative but as soon as you give him wheat products his diahrrea comes back, his eczema gets worse, he gets really spacey etc.
I find it really interesting that so many autistic kids ( my son is autistic) get worse while eating wheat products. At the age of 2, knowing what I know now I wouldnt give him a single bite of wheat products untill he gets much older.
Maybe that sounds like over reacting but you cant ( or at least its really hard) undo damage that has already been done .
I know the diet can be a pain considering there is wheat in Everything but if its possible for you I suggest staying gluten free untill they are much older then doing a challenge and testing again.
my 2 cents,
Nicole
---------------------------------
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[Non-text portions of this message have been removed]
My son tested negative but as soon as you give him wheat products his diahrrea comes back, his eczema gets worse, he gets really spacey etc.
I find it really interesting that so many autistic kids ( my son is autistic) get worse while eating wheat products. At the age of 2, knowing what I know now I wouldnt give him a single bite of wheat products untill he gets much older.
Maybe that sounds like over reacting but you cant ( or at least its really hard) undo damage that has already been done .
I know the diet can be a pain considering there is wheat in Everything but if its possible for you I suggest staying gluten free untill they are much older then doing a challenge and testing again.
my 2 cents,
Nicole
---------------------------------
Brings words and photos together (easily) with
PhotoMail - it's free and works with Yahoo! Mail.
[Non-text portions of this message have been removed]
Terri J
Hi, Melissa.
I mostly lurk on the list (this is one of a few unschooling lists I
subscribe to, so I find it's time consuming to sometimes just keep
up with reading! ;) ).
Anyway, for what it's worth I wanted to mention the Specific
Carbohydrate Diet. Here's a link to the main website:
http://www.breakingtheviciouscycle.info/
From what I understand, it works on the basis that the gut is
damaged so it cannot digest certain foods right now. By avoiding
certain carbohydrates and allowing foods the body can currently
digest well, you allow the gut to heal. And eventually you can
gradually reintroduce what might have been offending foods.
Also from what I understand, it's different from gluten-free in
thta it avoids pretty much all grains, not just gluten, but does
allow plenty of carbohydrates from fruits and vegetables. (Hence
the name "specific carbohydrate".)
But it seems you do not have to be on the diet for the rest of your
life, only enough time to allow the gut to heal. Although some do
choose to stay on it for longer periods.
It seems the diet has been successful for many people who suffer
from IBS, Crohn's, celiac, even autistic kids, have benefitted.
Thought it might be worth mentioning and looking at the info. Good
luck.
As for a sort of miniintroduction from me (because I really can't
remember if I posted one yet or not): Hi, I'm Terri. I have one
dd, who is 3.5 years old. We are enjoying this unschooling life,
have let go of many controls, and it is great. I still have much to
learn though and I enjoy reading what everyone has to say and
discuss. :)
Terri J
--- In [email protected], Melissa <autismhelp@...>
wrote:
I mostly lurk on the list (this is one of a few unschooling lists I
subscribe to, so I find it's time consuming to sometimes just keep
up with reading! ;) ).
Anyway, for what it's worth I wanted to mention the Specific
Carbohydrate Diet. Here's a link to the main website:
http://www.breakingtheviciouscycle.info/
From what I understand, it works on the basis that the gut is
damaged so it cannot digest certain foods right now. By avoiding
certain carbohydrates and allowing foods the body can currently
digest well, you allow the gut to heal. And eventually you can
gradually reintroduce what might have been offending foods.
Also from what I understand, it's different from gluten-free in
thta it avoids pretty much all grains, not just gluten, but does
allow plenty of carbohydrates from fruits and vegetables. (Hence
the name "specific carbohydrate".)
But it seems you do not have to be on the diet for the rest of your
life, only enough time to allow the gut to heal. Although some do
choose to stay on it for longer periods.
It seems the diet has been successful for many people who suffer
from IBS, Crohn's, celiac, even autistic kids, have benefitted.
Thought it might be worth mentioning and looking at the info. Good
luck.
As for a sort of miniintroduction from me (because I really can't
remember if I posted one yet or not): Hi, I'm Terri. I have one
dd, who is 3.5 years old. We are enjoying this unschooling life,
have let go of many controls, and it is great. I still have much to
learn though and I enjoy reading what everyone has to say and
discuss. :)
Terri J
--- In [email protected], Melissa <autismhelp@...>
wrote:
>food
> Sorry for cross-posting, just wanted to catch every list I could
> remember having the celiac discussion with.
>
> Got the test results back today, and both boys are showing no
> allergy reactions at all. As mentioned, Dan has been gettingdaily
> wheat for two months, so if it was a truly allergy, it would have(because
> shown up. Doctor now wants to wait a year until he's older
> older kids are more likely to react to blood test) and do a bloodallowing
> test specific for celiac (which is kind of what I thought we were
> doingGRRR!) He says to go ahead and follow our 'intuition',
> wheat however he feels comfortable. Sounds dangerous to me, hehas
> never shown signs of delayed growth because we stopped giving himother
> wheat at 9months. He does have all of the digestive signs, and
> complains of pain in his arm and leg bones (much more than our
> kids have with growth pains)it
>
> What I've read is that it's imperative to just do a biopsy and get
> over with. Please, anyone have response? Thanks to all, feel freeto
> reply privately or back on the group.Dan
> Melissa
> Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4),
> (2), and Avari Rose
>
Melissa
Thanks Nicole for your reply.
We will definitely stay wheat free, someone suggested a good GI here
that we can talk to. The diet is hard. It's really hard because wheat
is in all the food. And he reacts to it on his skin. that's why I was
so convinced it's a wheat allergy. He reacts to gluten and starch.
Like you said, we don't want to cause damage. He doesn't have delayed
growth, but he does already have the signs of brittle bones, and many
of the other symptoms of CD. Funny, my daughter is autistic, and
wheat free doesn't affect her at all, but the corn really does.
The hardest part is with unschooling lifestyle. We have to control so
MUCH of what they can eat. He desperately wants all these yummy
snacks. It's difficult to go with the flow of like, going to the zoo
or out to eat, because we can't just buy whatever is there.
Everything is so planned.
Now I just sound whiny. LOL! How do other families live this radical
unschooling style with restrictions like this.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
We will definitely stay wheat free, someone suggested a good GI here
that we can talk to. The diet is hard. It's really hard because wheat
is in all the food. And he reacts to it on his skin. that's why I was
so convinced it's a wheat allergy. He reacts to gluten and starch.
Like you said, we don't want to cause damage. He doesn't have delayed
growth, but he does already have the signs of brittle bones, and many
of the other symptoms of CD. Funny, my daughter is autistic, and
wheat free doesn't affect her at all, but the corn really does.
The hardest part is with unschooling lifestyle. We have to control so
MUCH of what they can eat. He desperately wants all these yummy
snacks. It's difficult to go with the flow of like, going to the zoo
or out to eat, because we can't just buy whatever is there.
Everything is so planned.
Now I just sound whiny. LOL! How do other families live this radical
unschooling style with restrictions like this.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
On Mar 3, 2006, at 8:01 PM, Nicole Willoughby wrote:
> Even with a biopsy its not uncommon for a false negative to appear
> untill wheat is part of the daily diet for as much as 6 months.
>
> My son tested negative but as soon as you give him wheat products
> his diahrrea comes back, his eczema gets worse, he gets really
> spacey etc.
>
> I find it really interesting that so many autistic kids ( my son
> is autistic) get worse while eating wheat products. At the age of
> 2, knowing what I know now I wouldnt give him a single bite of
> wheat products untill he gets much older.
> Maybe that sounds like over reacting but you cant ( or at least
> its really hard) undo damage that has already been done .
>
> I know the diet can be a pain considering there is wheat in
> Everything but if its possible for you I suggest staying gluten
> free untill they are much older then doing a challenge and testing
> again.
>
> my 2 cents,
> Nicole
>
>
>
>
> ---------------------------------
> Brings words and photos together (easily) with
> PhotoMail - it's free and works with Yahoo! Mail.
>
> [Non-text portions of this message have been removed]
>
>
>
> SPONSORED LINKS
> Secondary school education Graduate school education Home
> school education
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> school education
>
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>
> Visit your group "unschoolingbasics" on the web.
>
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> [email protected]
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>
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[Non-text portions of this message have been removed]
Donna Pedaci
Maybe if you treat the wheat free as a lifestyle choice, rather than a restriction/control, perhaps that would help. I know families who are vegan who always pack snacks when they go anywhere, because they understand that there may not always be vegan choices. With going out to eat, they understand that there aren't always a lot of vegan choices, so they don't go out that often. You could involve him in what are his choices to take as snacks, where could you go to eat, what would be a good choice to make.
Donna Pedaci
Donna Pedaci
----- Original Message -----
From: Melissa
To: [email protected]
Sent: Sunday, March 05, 2006 1:11 AM
Subject: Re: [unschoolingbasics] Questions about celiac testing
Thanks Nicole for your reply.
We will definitely stay wheat free, someone suggested a good GI here
that we can talk to. The diet is hard. It's really hard because wheat
is in all the food. And he reacts to it on his skin. that's why I was
so convinced it's a wheat allergy. He reacts to gluten and starch.
Like you said, we don't want to cause damage. He doesn't have delayed
growth, but he does already have the signs of brittle bones, and many
of the other symptoms of CD. Funny, my daughter is autistic, and
wheat free doesn't affect her at all, but the corn really does.
The hardest part is with unschooling lifestyle. We have to control so
MUCH of what they can eat. He desperately wants all these yummy
snacks. It's difficult to go with the flow of like, going to the zoo
or out to eat, because we can't just buy whatever is there.
Everything is so planned.
Now I just sound whiny. LOL! How do other families live this radical
unschooling style with restrictions like this.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose
On Mar 3, 2006, at 8:01 PM, Nicole Willoughby wrote:
> Even with a biopsy its not uncommon for a false negative to appear
> untill wheat is part of the daily diet for as much as 6 months.
>
> My son tested negative but as soon as you give him wheat products
> his diahrrea comes back, his eczema gets worse, he gets really
> spacey etc.
>
> I find it really interesting that so many autistic kids ( my son
> is autistic) get worse while eating wheat products. At the age of
> 2, knowing what I know now I wouldnt give him a single bite of
> wheat products untill he gets much older.
> Maybe that sounds like over reacting but you cant ( or at least
> its really hard) undo damage that has already been done .
>
> I know the diet can be a pain considering there is wheat in
> Everything but if its possible for you I suggest staying gluten
> free untill they are much older then doing a challenge and testing
> again.
>
> my 2 cents,
> Nicole
>
>
>
>
> ---------------------------------
> Brings words and photos together (easily) with
> PhotoMail - it's free and works with Yahoo! Mail.
>
> [Non-text portions of this message have been removed]
>
>
>
> SPONSORED LINKS
> Secondary school education Graduate school education Home
> school education
> Graduate school education online High school education Middle
> school education
>
> YAHOO! GROUPS LINKS
>
> Visit your group "unschoolingbasics" on the web.
>
> To unsubscribe from this group, send an email to:
> [email protected]
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
[Non-text portions of this message have been removed]
SPONSORED LINKS Secondary school education Graduate school education Home school education
Graduate school education online High school education Middle school education
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[Non-text portions of this message have been removed]
Nicole Willoughby
The diet is hard. It's really hard because wheat
is in all the food. And he reacts to it on his skin.>>>>>>>>>>>
Ugh ! yes it is hard and expensive! Im currently learning how to make things my son will eat from scratch because I cant afford to keep buying all the mixes and prepared breads from misrobens.
If feel its worth it though. My son had horrible skin rashes ..worst case of eczema Id ever seen and I could either remove offending foods ( gluten, casein and soy in our case) or spend a fortune on steriod creams, doc visits to get them, elidal and otc the counter stuff .
Funny, my daughter is autistic, and
wheat free doesn't affect her at all, but the corn really does.>>>>>>>>>>>>>>>>>>>>
ewwwww (( )) that can be an even tougher one. Are you aware that most of the citric acid added to foods is corn derived?
He desperately wants all these yummy
snacks. It's difficult to go with the flow of like, going to the zoo
or out to eat, because we can't just buy whatever is there.
Everything is so planned.>>>>>>>>>>>>>>>
That part is tough. I generaly pack a lunch for everyone for a zoo trips but we go almost weekly and it ends up being $30 for the 4 of us to buy lunch there.
Occasionaly at Mcdonalds ill talk the manager out of a kids meal bad and chicken nugget container. Then make my son's nuggets at home and bring them with us to serve with everyone else. You can also bring your favorite gluten free bun along and request just a meat patty w/o grill seasoning ( often has gluten fillers).
You may also want to consider a good digestive enzyme and give it when they cheat occasionaly.
Now I just sound whiny. LOL! How do other families live this radical
unschooling style with restrictions like this.
er well Im just getting started on this road and DS is in sped preschool and we havent decided when or if to pull him out.
I try to let my children take the lead but its hard with Nathaniel. He is completely non verbal so I cant ask him what he wants , the only signs Ive managed to get across to him are eat and more. So for now I have to trust that his happiness when he gets to the school, his dragging me to his class and the big hug he usualy gives the closest teacher are signs that he is content where he is right now.
Nicole
---------------------------------
Yahoo! Mail
Use Photomail to share photos without annoying attachments.
[Non-text portions of this message have been removed]
is in all the food. And he reacts to it on his skin.>>>>>>>>>>>
Ugh ! yes it is hard and expensive! Im currently learning how to make things my son will eat from scratch because I cant afford to keep buying all the mixes and prepared breads from misrobens.
If feel its worth it though. My son had horrible skin rashes ..worst case of eczema Id ever seen and I could either remove offending foods ( gluten, casein and soy in our case) or spend a fortune on steriod creams, doc visits to get them, elidal and otc the counter stuff .
Funny, my daughter is autistic, and
wheat free doesn't affect her at all, but the corn really does.>>>>>>>>>>>>>>>>>>>>
ewwwww (( )) that can be an even tougher one. Are you aware that most of the citric acid added to foods is corn derived?
He desperately wants all these yummy
snacks. It's difficult to go with the flow of like, going to the zoo
or out to eat, because we can't just buy whatever is there.
Everything is so planned.>>>>>>>>>>>>>>>
That part is tough. I generaly pack a lunch for everyone for a zoo trips but we go almost weekly and it ends up being $30 for the 4 of us to buy lunch there.
Occasionaly at Mcdonalds ill talk the manager out of a kids meal bad and chicken nugget container. Then make my son's nuggets at home and bring them with us to serve with everyone else. You can also bring your favorite gluten free bun along and request just a meat patty w/o grill seasoning ( often has gluten fillers).
You may also want to consider a good digestive enzyme and give it when they cheat occasionaly.
Now I just sound whiny. LOL! How do other families live this radical
unschooling style with restrictions like this.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>naw you dont sound whiny . It is tough. As far as the redical unschooling lifestyle ....
er well Im just getting started on this road and DS is in sped preschool and we havent decided when or if to pull him out.
I try to let my children take the lead but its hard with Nathaniel. He is completely non verbal so I cant ask him what he wants , the only signs Ive managed to get across to him are eat and more. So for now I have to trust that his happiness when he gets to the school, his dragging me to his class and the big hug he usualy gives the closest teacher are signs that he is content where he is right now.
Nicole
---------------------------------
Yahoo! Mail
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[Non-text portions of this message have been removed]
Melissa
On Mar 5, 2006, at 7:57 AM, Nicole Willoughby wrote:
chips that are fried in corn oil. So that's been interesting.
daughter was like that when we started this road, but with a lot of
prompting, she got to the point where she would ask for just about
anything with one word. Then we moved on to that one word with 'more'
or 'please' When she was five, we got to the point where we could
hold up three fingers and say, "Three words please". We'd usually get
'more crackers please'. Now that she's eight, we usually prompt her
with 'I need a sentence please', although on days that she is
stressed, we move back to holding up fingers and asking for a number
of words. She really is much happier, and I'd say about a quarter of
the time she will ask independently for something she really really
wants. Just keep labeling for now, and it'll happen.
We kept Breanna in school all through kindergarten. And TBH, it was a
great program up til first grade. She was joyful to be there, and the
kids really were great with her. But once academics got serious, she
was miserable, the schools didn't know what to do with her, they
didn't know how to teach her, and basically they were stressing her
out. Thankfully, or else dh would never been on board with
homeschooling.
Melissa
>Yes, and maltitol, and dextrose, etc. She can't even have potato
> Funny, my daughter is autistic, and
> wheat free doesn't affect her at all, but the corn really
> does.>>>>>>>>>>>>>>>>>>>>
>
> ewwwww (( )) that can be an even tougher one. Are you aware
> that most of the citric acid added to foods is corn derived?
chips that are fried in corn oil. So that's been interesting.
>Nicole, i wanted to let you know that *that* part does get easier. My
> naw you dont sound whiny . It is tough. As far as the redical
> unschooling lifestyle ....
> er well Im just getting started on this road and DS is in sped
> preschool and we havent decided when or if to pull him out.
> I try to let my children take the lead but its hard with
> Nathaniel. He is completely non verbal so I cant ask him what he
> wants , the only signs Ive managed to get across to him are eat and
> more. So for now I have to trust that his happiness when he gets to
> the school, his dragging me to his class and the big hug he usualy
> gives the closest teacher are signs that he is content where he is
> right now.
daughter was like that when we started this road, but with a lot of
prompting, she got to the point where she would ask for just about
anything with one word. Then we moved on to that one word with 'more'
or 'please' When she was five, we got to the point where we could
hold up three fingers and say, "Three words please". We'd usually get
'more crackers please'. Now that she's eight, we usually prompt her
with 'I need a sentence please', although on days that she is
stressed, we move back to holding up fingers and asking for a number
of words. She really is much happier, and I'd say about a quarter of
the time she will ask independently for something she really really
wants. Just keep labeling for now, and it'll happen.
We kept Breanna in school all through kindergarten. And TBH, it was a
great program up til first grade. She was joyful to be there, and the
kids really were great with her. But once academics got serious, she
was miserable, the schools didn't know what to do with her, they
didn't know how to teach her, and basically they were stressing her
out. Thankfully, or else dh would never been on board with
homeschooling.
Melissa