GFCF, Kathy and posted archives

[Guest guest]

Kathy wrote:

> his pediatrician put him on a strict absolute gluten-free diet. He does have

normal IgA levels.

>In two days not only was completely potty-trained but also he lost all

of his former vestibular " sensory integration dysfunction. "

I read Kathy's post with interest. However I am confused. This post is about

the GFCF diet and how it helped . But when I read 's response

and attached archives I am only finding information regarding Fish Oil.

Was there supposed to be something regarding the diet in those archives?

Thanks,

[Guest guest]

,

I can't tell you anything about the archives, but I wanted to say

that I had a similar experience with the GFCF diet. My daughter Meg

(turned 3 in October) is not fully potty-trained yet, but before

starting GFCF she would never even go near the potty. The day after

we removed dairy she started urinating on the toilet a few times a

day, and the day after we went totally GFCF she had her first BM on

the potty. She was almost completely out of diapers for a few days,

but lately she's been very stubborn about it - she's figured out

it's a control thing and will only go when she wants to. We'll give

her a few months... I really don't think she had the ability to go

before GFCF - not sure if it's vestibular or motor-planning or

sensory or what.

If you're interested in the diet, feel free to email me privately

and I can give you some advice and links. We've only been doing it

for about 1.5 months, but I high recommend it!

Kerri

> > his pediatrician put him on a strict absolute gluten-free diet.

He does have

> normal IgA levels.

>

> >In two days not only was completely potty-trained but

also he lost all

> of his former vestibular " sensory integration dysfunction. "

>

> I read Kathy's post with interest. However I am confused. This

post is about

> the GFCF diet and how it helped . But when I read 's

response

> and attached archives I am only finding information regarding Fish

Oil.

>

> Was there supposed to be something regarding the diet in those

archives?

>

> Thanks,

>

>

[Guest guest]

Hi ,

Kathy is a member from over two years ago when her grandson Ben

first started the journey. Many of us whom have been in this group

for awhile know Kathy and love her warm and informative messages

which we had not heard for awhile.

What I was doing was providing background of where Ben was up till

we didn't hear from Kathy for a bit for people who may be newer and

not know who she is. When I post archives (memory lane I call it)

for people it's quite interesting to see how far the child has come

along!

Kathy is currently working on putting together how Ben got from then

till now, how she found out about celiac etc., which is a story that

will fill in the blanks for all. There was nothing about diet in

the archives because back then he wasn't doing then what he is doing

today. He was only on fish oil then. Today he is on fish oil and

she'll explain what else is going on and why.

In addition once we hear the rest of Kathy's grandson's story, we

may find that it's perhaps the missing link to some recent

conversation.

=====

[Guest guest]

Can someone tell me the symptoms of celiac..... My son's stool is light

yellowish color and I've been researching this and came up with celiac

except for he doesn't have many of the other symptoms I've read in this

site. He doesn't have a large diet as it is and so putting on gluten-free

or casein- free would be close to impossible. I'd appreciate more

information on what to look for...I am going to eventually have his doctor

give him a celiac screening.

[Guest guest]

Most obvious are the GI symptoms: bloating, abdominal pain, diarrhea

(sometimes constipation), vomiting. But many kids (and adults) have more

subtle findings. I posted some of these earlier. Poor growth, anemia, joint

pains, ataxia, depression...the list really goes on. These days, any young

child diagnosed with type 1 diabetes should have a screen for celiac,

because there is a genetic link between celiac, diabetes and hypothyroid.

There can be no symptoms (completely well) for years for a celiac, only to

present in adulthood with a form of the gut cancers that are associated with

celiac. There's a ton of information in the celiac website. Google celiac

disease and you will find a great deal of information.

There are also a ton of reasons for odd colored stool (many benign) - that

may be nothing to worry about. But just like within the last 5 years, a good

pediatric endocrinologist will screen a newly diagnosed diabetic for celiac

(based on new research over the last few years), I have wondered whether

kids with an autism diagnosis shouldn't also be screened given the high

number of autistic children who actually have anti-glaiden/anti-gluten

antibodies, and the anecdotal response to the GF/CF diet - the only option

for good health for a celiac diagnosis. Basically GF/CF means giving up

processed food (since gluten is a preservative in nearly everything

processed and not always listed on the label). Certainly a healthier

option - no processed food - but not easy in today's society. But once you

learn good substititions, it becomes easier and just a way of life. My boys

are both gluten intolerant (also allergic to milk, rye, corn, rice, pretty

much all grains we've tried, & soy in addition to wheat - talk about a

difficult diet, but certainly worth the effort given the alternative of a

sickly child. No one would have ever guessed I'd be baking my own bread

(good thing there's garbonzo flour). -

Re: [ ] Re: GFCF, Kathy and posted archives

Can someone tell me the symptoms of celiac..... My son's stool is light

yellowish color and I've been researching this and came up with celiac

except for he doesn't have many of the other symptoms I've read in this

site. He doesn't have a large diet as it is and so putting on gluten-free

or casein- free would be close to impossible. I'd appreciate more

information on what to look for...I am going to eventually have his doctor

give him a celiac screening.

[Guest guest]

I can't verify, but I've been told that some kids with celiac don't

present with any symptoms. If you're going to do the testing, make

sure it is done prior to starting any gluten-free diet.

Kerri

>

> Can someone tell me the symptoms of celiac..... My son's stool is

light

> yellowish color and I've been researching this and came up with

celiac

> except for he doesn't have many of the other symptoms I've read in

this

> site. He doesn't have a large diet as it is and so putting on gluten-

free

> or casein- free would be close to impossible. I'd appreciate more

> information on what to look for...I am going to eventually have his

doctor

> give him a celiac screening.

>

[Guest guest]

>

> Can someone tell me the symptoms of celiac

Hi -

Both of my children have been diagnosed with celiac, and both have

extremely different symptoms. My son, who just turned 8, has extreme

digestive issues and will usually start with diarrea within an hour of

coonsuming anything containing glutens - now that he has been on the GF

diet for 2 years, his reaction has gotten stronger and he will respond

to trace amounts - which is how we know if we've goofed.

My daughter - age 4 - and also Apraxic, behaves more like Ben. In fact

I was very interested in that post as it explained some of her quirky

testing responses as well. Shee has been GF for 2 years now as well

and after reading some of these posts I'm beginning to feel like it's

tome to add the CF to her as well. She gets MANY behavioral issues

when even trace amounts are consumed. And, thanks to my local public

school system, she was fed pancakes, doughnuts, etc - but I digress...!!

Not only do both kids have different symptoms, but both of them had

different test results as well. I truly think the only way for you and

your child to know for sure is to eliminate for 6 months to a year and

see if it truly helps.

It's not as difficult a diet as you think initially - although it can

be quite expensive. If you have a Whole Foods locally, their Gluten

Free Sandwich bread is the best out there - and it makes wonderful

grilled cheese, breadcrumbs and even french toast. It's a difficult

mindset, but a surprisingly easy adjustment. Whole Foods even carries

gluten free chicken nuggets in the dinosaur shape! And french fries

are still allowed - yes-even Mcs!

Good luck and best wishes

Kim

[Guest guest]

Actually Mcs french fries DO contain gluten (and milk)...thus recent

law suites by parents of celiacs.

But if you have celiac - you have to consider even the grilling techniques.

French fries are fried up in the same oil as

the chichen mcnuggets - which are coated with bread crumbs. So even if the

fries themselves don't have gluten, they will be contaminated by the oils

they are fried in. Every restaurant becomes suspect. You learn to talk to

the chef before meals are prepared, and if he seems to not care or not

understand - you have to go elsewhere.

Its the cross-contamination that is so difficult to avoid.

I'm sure you gave the school your 2 cents on the pancake feed/dounut feed.

That sort of slip up in a

kid with anaphylaxis to peanuts for example could be fatal. That is totally

unacceptable. I think our school is

very tired of me coming in an discussing the food allergies - but everyone

has been very good about it. There are

enough kids with peanut allergy that I think everyone is on the same

age. -

[ ] Re: GFCF, Kathy and posted archives

>

> Can someone tell me the symptoms of celiac

Hi -

Both of my children have been diagnosed with celiac, and both have

extremely different symptoms. My son, who just turned 8, has extreme

digestive issues and will usually start with diarrea within an hour of

coonsuming anything containing glutens - now that he has been on the GF

diet for 2 years, his reaction has gotten stronger and he will respond

to trace amounts - which is how we know if we've goofed.

My daughter - age 4 - and also Apraxic, behaves more like Ben. In fact

I was very interested in that post as it explained some of her quirky

testing responses as well. Shee has been GF for 2 years now as well

and after reading some of these posts I'm beginning to feel like it's

tome to add the CF to her as well. She gets MANY behavioral issues

when even trace amounts are consumed. And, thanks to my local public

school system, she was fed pancakes, doughnuts, etc - but I digress...!!

Not only do both kids have different symptoms, but both of them had

different test results as well. I truly think the only way for you and

your child to know for sure is to eliminate for 6 months to a year and

see if it truly helps.

It's not as difficult a diet as you think initially - although it can

be quite expensive. If you have a Whole Foods locally, their Gluten

Free Sandwich bread is the best out there - and it makes wonderful

grilled cheese, breadcrumbs and even french toast. It's a difficult

mindset, but a surprisingly easy adjustment. Whole Foods even carries

gluten free chicken nuggets in the dinosaur shape! And french fries

are still allowed - yes-even Mcs!

Good luck and best wishes

Kim

[Guest guest]

Actually, - as the mom of a SEVERELY allergic kid (peanuts)

I'm SHOCKED at how unresponsive and inept folks in schools still

are. DYK they suggested I send my kid home during parties so they

could serve whatever they wanted? And that they think he should go

home for lunch? Illegal and surprising...but not. Sigh. Going

GF/CF and having school support in this area would be hideous! Just

another bleak outlook...

Marina

> >

> > Can someone tell me the symptoms of celiac

>

> Hi -

>

> Both of my children have been diagnosed with celiac, and both have

> extremely different symptoms. My son, who just turned 8, has

extreme

> digestive issues and will usually start with diarrea within an

hour of

> coonsuming anything containing glutens - now that he has been on

the GF

> diet for 2 years, his reaction has gotten stronger and he will

respond

> to trace amounts - which is how we know if we've goofed.

>

> My daughter - age 4 - and also Apraxic, behaves more like Ben. In

fact

> I was very interested in that post as it explained some of her

quirky

> testing responses as well. Shee has been GF for 2 years now as

well

> and after reading some of these posts I'm beginning to feel like

it's

> tome to add the CF to her as well. She gets MANY behavioral issues

> when even trace amounts are consumed. And, thanks to my local

public

> school system, she was fed pancakes, doughnuts, etc - but I

digress...!!

>

> Not only do both kids have different symptoms, but both of them had

> different test results as well. I truly think the only way for

you and

> your child to know for sure is to eliminate for 6 months to a year

and

> see if it truly helps.

>

> It's not as difficult a diet as you think initially - although it

can

> be quite expensive. If you have a Whole Foods locally, their

Gluten

> Free Sandwich bread is the best out there - and it makes wonderful

> grilled cheese, breadcrumbs and even french toast. It's a

difficult

> mindset, but a surprisingly easy adjustment. Whole Foods even

carries

> gluten free chicken nuggets in the dinosaur shape! And french

fries

> are still allowed - yes-even Mcs!

>

> Good luck and best wishes

> Kim

>

>

>

>

>

>

>

>

>

[Guest guest]

Jeff is correct. Do the serological blood testing before going gluten-free,

although the

more sensitive intestinal serological testing is reportedly still accurate for

some

considerable time afterwards...see www.enterolab.com

We had Benny tested at enterolab.com and the results were consistent with my

(his

grandma's) testing at Labcorps...he had one of my gluten-sensitive but not

classical celiac

HLA alleles, he was very positive for anti-gliadin IgA (I was positive for

anti-gliadin IgG,

since I have no IgA) and he was positive for the autoantibody anti-tissue

transglutaminase,

which in gluten ataxia attacks the Purkinje cells in the cerebellum, which are

critical for

proper vestibular functioning.

So, from our experience, the symptoms of gluten intolerance may not be the

classical

diarrhea or steatorrhea or malabsorption: you may actually find that your

child's vestibular

functioning is affected. This is what happened to , and it affected his

toilet

training, too. And now that he is off gluten, he has recovered from this!! We

are actually

going to have a birthday party for him next Sunday at Silver Springs, now that

he loves to

go on the boats, the rides, and the carousel that he screamed on when non-verbal

and

refused to go on later when he was able to speak. And it wasn't just being

oppositional,

sometimes I would say to him, " Can't we go on the boat? You are making Grandma

sad, "

and he would look at me and say, " I sorry. " No-one can tell us that going from

*always*

defecating (in a pull-up) standing up in a closet, to sitting on the toilet and

going normally

overnight is a coincidence, when the gluten was finally removed from his diet at

4 years,

11 months.

Peace,

Kathy E.

> >

> > Can someone tell me the symptoms of celiac..... My son's stool is

> light

> > yellowish color and I've been researching this and came up with

> celiac

> > except for he doesn't have many of the other symptoms I've read in

> this

> > site. He doesn't have a large diet as it is and so putting on gluten-

> free

> > or casein- free would be close to impossible. I'd appreciate more

> > information on what to look for...I am going to eventually have his

> doctor

> > give him a celiac screening.

> >

>

[Guest guest]

That's really awful. Our school has peanut free rooms and cafeteria. Makes

it difficult for my son who is allergic to nearly everything but peanuts -

peanut butter has become the staple lunch. But I totally understand the

rule, and would hate to think something my child brought in made someone

else's child ill. The response you are describing reflects ignorance. Can't

you get a local allergist to come and give an educative session to the

school administration and PTA meeting? Many other schools have done this.

You could also contact the allergy and asthma network for suggestions. That

really could be a life-threatening condition that the school needs to be

sensitive to...not punish your child!!! -

[ ] Re: GFCF, Kathy and posted archives

Actually, - as the mom of a SEVERELY allergic kid (peanuts)

I'm SHOCKED at how unresponsive and inept folks in schools still

are. DYK they suggested I send my kid home during parties so they

could serve whatever they wanted? And that they think he should go

home for lunch? Illegal and surprising...but not. Sigh. Going

GF/CF and having school support in this area would be hideous! Just

another bleak outlook...

Marina

[Guest guest]

They actually serve peanut butter sandwiches EVERY SINGLE DAY at the

cafeteria. he will be relegated to a card table where the " allergic

kids " sit if he stays for lunch. Allergists have come in before to

educate them - and mind you, this is one of the better school

districts in our state. Lovely, eh? It is awful because it creates

a naturally adversarial relationship between the parents and the

school - how could it NOT? Then there was the time I found out

that " most " of the specials teachers with whom he was working were

NOT TRAINED to use the epipen. When I asked for them to be trained,

one of the other teachers did it - not a nurse. Really, they need a

major reaction to wake them up. I miss the northeast...

Marina

>

> That's really awful. Our school has peanut free rooms and

cafeteria. Makes

> it difficult for my son who is allergic to nearly everything but

peanuts -

> peanut butter has become the staple lunch. But I totally

understand the

> rule, and would hate to think something my child brought in made

someone

> else's child ill. The response you are describing reflects

ignorance. Can't

> you get a local allergist to come and give an educative session to

the

> school administration and PTA meeting? Many other schools have

done this.

> You could also contact the allergy and asthma network for

suggestions. That

> really could be a life-threatening condition that the school needs

to be

> sensitive to...not punish your child!!! -

>

> [ ] Re: GFCF, Kathy and posted archives

>

>

> Actually, - as the mom of a SEVERELY allergic kid (peanuts)

> I'm SHOCKED at how unresponsive and inept folks in schools still

> are. DYK they suggested I send my kid home during parties so they

> could serve whatever they wanted? And that they think he should go

> home for lunch? Illegal and surprising...but not. Sigh. Going

> GF/CF and having school support in this area would be hideous!

Just

> another bleak outlook...

>

> Marina

>

[Guest guest]

Dear Marina,

I would not let this rest if I were you. Fortunately if someone makes a

mistake with my boys, we are only dealing with weeks of abdominal symptoms

(which could be severe), eczema and maybe a little asthma exacerbation (all

relative, eh?), and not a life threatening condition. If you and others in

the school have kids with life-threatening anaphylaxis - a mistake can

literally take your child's life. This is unexceptable. I would contact an

advocacy group, and talk to them about options - before its too late for

some child. -

The Food Allergy & Anaphylaxis Network

Education. Advocacy. Research. Awareness

http://www.foodallergy.org/

[ ] Re: GFCF, Kathy and posted archives

>

>

> Actually, - as the mom of a SEVERELY allergic kid (peanuts)

> I'm SHOCKED at how unresponsive and inept folks in schools still

> are. DYK they suggested I send my kid home during parties so they

> could serve whatever they wanted? And that they think he should go

> home for lunch? Illegal and surprising...but not. Sigh. Going

> GF/CF and having school support in this area would be hideous!

Just

> another bleak outlook...

>

> Marina

>

[Guest guest]

Yeah - no kidding. When they were trying to determine how to handle

snack time and it was getting out of hand, I suggested that we all

be quiet and talk to the teacher, since he was going to be the one

administering the epi when one of his students' parents sent in

chocolate chip cookies with contraband chips - or baked them on the

same cookie sheet as the last peanut butter batch from last week....

We've done all that we can without threatening to sue - I was really

hoping that someone else would be the change-agent on this. Sigh.

Thanks for the support - Marina

>

> Dear Marina,

>

> I would not let this rest if I were you. Fortunately if someone

makes a

> mistake with my boys, we are only dealing with weeks of abdominal

symptoms

> (which could be severe), eczema and maybe a little asthma

exacerbation (all

> relative, eh?), and not a life threatening condition. If you and

others in

> the school have kids with life-threatening anaphylaxis - a mistake

can

> literally take your child's life. This is unexceptable. I would

contact an

> advocacy group, and talk to them about options - before its too

late for

> some child. -

>

> The Food Allergy & Anaphylaxis Network

> Education. Advocacy. Research. Awareness

> http://www.foodallergy.org/