Re: Can someone please explain this??

February 17, 2007

I think that is an EXCELLENT question Cheryl. I haven't had a chance

to get into see him; thus he is too overwhelmed with patients at the

moment until the new clinic opens up.

I've had to do about the same diet; but I'm wondering if this might

not apply to me as well.

So I'm VERY interested on what the rationale might be. Perhaps it is

something I ought to look at as well.

Thanks for the topic and question Cheryl; a great one I feel.

- ;-)

>

> At our last appointment we got G's allergy panel back and of course,

> it was awful. He's very allergic to a bunch of foods. Dr. G wanted

> to know what he ate throughout the week and based on the report, I am

> basically feeding him a gluten, casein, egg, peanut and sunflower

> free diet. When I e-mailed him what foods he is now eating and let

> him know that everything was gfcf I got a message back from

> saying he didn't want him on a GFCF diet. What?!? I understood his

> reasoning and I agreed with him before that I didn't want to do gfcf

> and had no intention of going gfcf unless I found out I needed to do

> so. When I got that panel back, I kind of saw it as a need to go

> gfcf. It makes sense to me, if he's allergic, don't feed it to him.

> But he's telling me no. I don't get it and I certainly don't

> understand why he would want me to feed my child something he's

> allergic to. I'm no allergist but I do know that allergies can wreak

> havoc with the brain and it's development. He said that going gfcf

> can cause more allergies to come up, etc. It still doesn't make

> sense to me. Yes, more allergies can come up but that doesn't seem

> like a good enough reason to feed him what he's already allergic to

> and our ped certainly doesn't want us feeding it to him (as a matter

> of fact, our ped wants us to see an allergist and get tested for

> celiac just to be sure). Someone please help me understand why he

> thinks I should do this? Our next appointment isn't for a couple of

> weeks so and I'm kind of irritated about the whole thing. It's not

> so much that I don't trust him, I just don't understand him. Someone

> please explain this to me if you can.

>

> Thanks,

> Cheryl

>

February 17, 2007

Hey Cheryl -

I'll give a stab at explaining some for you.

And btw - rejoice! I understand the trust thing,

too. You want to understand, especially when you hear

so much about GFCF.

I have comments w/in the text below.

--- Cheryl Lowrance <c.lowrance@...> wrote:

> At our last appointment we got G's allergy panel

> back and of course,

> it was awful. He's very allergic to a bunch of

> foods.

**** The allergy panel does NOT necessarily indicate

true allergy. It indicates the immune reactions, and

is very very inaccurate. It is only a tool, and can be

very useful, but you do not remove every food on

there. First, not necessary - I'll try to explain

more fully. Second, not helpful. Many kids simply do

low allergy, and w/the other protocol meds, the food

reactions will also cool down. Dr G only starts

getting very strict on diet restrictions when he's

monitoring the labs and the need is indicated by

eosiniphils, and other markers. To start, you follow

his diet, and the food panel very often starts

'cooling down' immediately. Some people DO have to

get very restrictive per his instructions, but you are

not there yet, and may not have to be.

Dr. G wanted

> to know what he ate throughout the week and based on

> the report, I am

> basically feeding him a gluten, casein, egg, peanut

> and sunflower

> free diet. When I e-mailed him what foods he is now

> eating and let

> him know that everything was gfcf I got a message

> back from

> saying he didn't want him on a GFCF diet. What?!?

***** For one thing, the GFCF diet attempts to replace

the american diet by the use of different grains,

ingredients, etc. Much better to eliminate that

aspect and change the whole diet altogether, w/an

emphasis on proteins and complex carbs, etc. It

doesn't fall into place immediately. Another HUGE

problem, and lots of gluten intolerants and even

celiacs end up in an allergy crisis upon complete

removal of foods. (A lot of people in the GFCFers

groups have not quite figured this out yet.) When you

remove something that the immune system has been

chronically reacting to (not to mention replacing it

w/'something foreign'), the immune system doesn't just

" turn off " in our kids ... it keeps looking for

something else.

I follow another GFCF list where a lot of people are

complaining about becoming more sensitive when going

GFCF - it happens A LOT.

> I understood his

> reasoning and I agreed with him before that I didn't

> want to do gfcf

> and had no intention of going gfcf unless I found

> out I needed to do

> so. When I got that panel back, I kind of saw it as

> a need to go

> gfcf.

***** That belief is based on what you've learned from

other groups that don't have the overall picture of

immune dysfunction.

It makes sense to me, if he's allergic, don't

> feed it to him.

> But he's telling me no.

***** This is not an allergy. This is a measure of

how activated the immune system is against foods - by

IgG not IgE which is the true allergy. It can be due

to inflammation in the gut from chronic inflammation

or yeast - meaning a lack of good mucous, etc, and the

protocol and diet measures are all going to be

addressing the overall immune issues, including gut

health, so militant diet restriction isn't required

except when the labs indicate it. It is the concept

you've picked up from the whole alternative community.

There really are reasons for these labs showing what

they do that don't necessarily match up to the

interpretations those groups are attaching to them - a

big reason why the mainstream medical community

doesn't attach any validity to them. They do have a

purpose, though.

I don't get it and I

> certainly don't

> understand why he would want me to feed my child

> something he's

> allergic to. I'm no allergist but I do know that

> allergies can wreak

> havoc with the brain and it's development.

***** Because they're not allergies. Because that

test does not truly indicate that. It measures

activation against foods. Actually, many OTHER things

- w/food reactions being a result and symptom - are

actually wreaking havoc on the brain/development. If

the immune system and gut were in ok shape, the food

reactions would not be occuring. They're a result and

a symptom, not a cause. And they really do

(frequently but not every single time) cool off and go

away w/out this strict diet control. And the

replacement foods are very often far more reactive

than the highly processed wheat - which is the only

thing Dr G is ok with - and ONLY in very LIMITED

quantities. Dairy is the big no no. Also, the

probiotics (and you know to strictly limit strains?)

will help address the issues too. And multiple

strains - a " very logical assumption " that these would

be good .... aren't!! Because they're stimulating

the immune system in a way that is bad for in an

active state.

He said

> that going gfcf

> can cause more allergies to come up, etc. It still

> doesn't make

> sense to me.

****** It certainly mistifies and upsets a ton of

GFCFers too. Dr G says ONLY true celiacs (meeting the

main criteria) should be gluten free. The GFCFers

that I follow often go grain-free altogether to change

their diets.

You may want to confirm w/dr G ... I can't remember

.... but I think if you went entirely grain free it's

ok but not to replace it in the manner of the GFCF

diet.

Yes, more allergies can come up but

> that doesn't seem

> like a good enough reason to feed him what he's

> already allergic to

> and our ped certainly doesn't want us feeding it to

> him (as a matter

> of fact, our ped wants us to see an allergist and

> get tested for

> celiac just to be sure).

***** Automatic when gliadin antibodies are elevated.

But he almost certainly won't be celiac. Your ped is

simply covering bases. Dr G is treating , and

celiac is not related technically.

Someone please help me

> understand why he

> thinks I should do this? Our next appointment isn't

> for a couple of

> weeks so and I'm kind of irritated about the whole

> thing.

***** Trust me, your life will be so much easier

following his instructions as opposed to what the

current ideas " out there " are. And your child stands

a better chance of overall healing that way than

w/militant diet restrictions.

It's not

> so much that I don't trust him, I just don't

> understand him. Someone

> please explain this to me if you can.

>

> Thanks,

> Cheryl

>

**** He's very different from the alternative docs,

because he's following 30 years of CFIDS research.

ALL THIS HAS BEEN TRIED w/ CFIDS, and these issues/

problems have already been discovered to be true.

HTH-

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February 18, 2007

When we discussed this with Dr. G many years ago, my impression was that he

was concerned about all the fillers and other ingredients that could trigger

immune reactions in pre-made cfgf substitutes. It does seem that those who use

a lot of the pre-made substitutes and mixes tend to have more yeast control

problems. He also has found that many of his patients (if not all) tend to

react to any whole grain. After years of reworking my diet towards more

healthier, whole-grain options, I was very skeptical when he kept pushing this

belief.

I do have to admit though that he was right. Even though both of our systems

are healthier and we can easily handle many foods we previously couldn't, we

still both tend to have less tolerance for whole grains even if we don't show

an allergy to them. Since many people substitute brown rice and whole grain

corn when doing the gfcf diet, I imagine he's concerned about triggering

further immune responses.

My son had a true allergic reaction to wheat and milk so needed to stay away

from them. Instead of substituting other whole grains or pre-mixed items that

could trigger other allergies, we were careful to choose substitutions that

he could tolerate. He can now tolerate processed white flour once a week or so

but tends to prefer to still stay away from it since he says he feels better

not eating it.

Gaylen

February 18, 2007

On Feb 17, 2007, at 11:03 AM, wrote:

>

> Many kids simply do

> low allergy, and w/the other protocol meds, the food

> reactions will also cool down. Dr G only starts

> getting very strict on diet restrictions when he's

> monitoring the labs and the need is indicated by

> eosiniphils, and other markers. To start, you follow

> his diet, and the food panel very often starts

> 'cooling down' immediately. Some people DO have to

> get very restrictive per his instructions, but you are

> not there yet, and may not have to be.

Thank you, this makes much more sense to me now. I see that he's not

ignoring the labs but using it as a gauge when checking eosinphils

and such. This makes me feel much more comfortable and willing. And

thank you so much for taking the time to explain this to me. We were

already following his diet and removed dairy (after the panel). I do

have another question about this, though. He told me no dairy but at

the same time, he tells me that it's okay if he eats crackers like

ritz (which contains dairy) but not goldfish. What's the

difference? Why are some things okay and others not? How do I know?

>

> ***** This is not an allergy. This is a measure of

> how activated the immune system is against foods - by

> IgG not IgE which is the true allergy.

The only question I have here is the lab stated that they tested IgG

and IgE when I got the results back. How does this affect the

outcome of the labs as far as what is a true allergy and what isn't?

>

> (and you know to strictly limit strains?)

No, I didn't. I used culturelle when he was having gut issues (too

much fruit) and was planning on using it again when we start the

Nizoral. He never mentioned to me that culturelle was not a good one

to use so I'm assuming it's okay? When I told him we we're using it

when we first met he said he wasn't at all concerned by me using it.

I do know that it has a trace amount of casein but again, he didn't

seem to care at the time we talked about it.

>

> ***** Automatic when gliadin antibodies are elevated.

His gliadin were in the reference ranges so they were normal. I got

this result first and was relieved as I know this is a gluten thing.

I got the allergy panel a month later and forgot about this one.

> But he almost certainly won't be celiac. Your ped is

> simply covering bases.

Yes, and he said as much. He doesn't think he has celiac but just

wants to make sure we aren't assuming too much.

> Dr G is treating , and

> celiac is not related technically.

No, and that's why I will get tested through the ped instead since

it's really not his area.

>

> ***** Trust me, your life will be so much easier

> following his instructions as opposed to what the

> current ideas " out there " are. And your child stands

> a better chance of overall healing that way than

> w/militant diet restrictions.

It's definitely cheaper!

Thanks again, for helping me understand. I know I have a lot of

questions but I have a hard time blindly following *any* doctor. I

want to make sure that I understand before I just do it, especially

when it comes to my kids.

Cheryl

February 18, 2007

Ooohhh watch out for culturelle ... at least not if

there is ANY OCD or anxiety or repetitive behaviors

involved. I'm not at my personal computer but I'll

try to remember to post the study info on culturelle.

It stimulates some cytokines that tend to already be

overexpressed in ... Really, I would recommend

you switch on that one. Not everyone has problems,

but it does have the potential. Dr G may not be

concerned about it right now, and may not want to make

bunches of changes at one time. Plus maybe it 's just

a very few who react to it - mainly PANDAS kids... I

don't know but would keep an eye out with it.

Goldfish have more dairy than Ritz. I think Ritz is

like less than 2%. Goldfish have coloring too, which

is another reactive thing. Anyway, some of the

highly processed foods have most of the reactive

proteins broken down so much by processing that they

no longer trigger reactions. That's one of the

reasons he allows highly processed wheats at low

amounts. You still have to see what sets your child

off, but it's great to know that tiny amounts here and

there are not a crisis, isn't it?

I think you identify " true " allergies as IgE but may

not be fully accurate.

I know what you mean about putting total faith in a

doctor... I had a year of asking tons of questions to

Dr G back when he attended chat weekly, so I already

had a good foundation and hours of info before having

to give my kids the meds etc. He may be the only

doctor I have ever fully trusted - definitely - but I

still had to know and understand why my kids were

taking what they were taking, and why no one else

seemed to agree with it. It helped looking into the

reputations of the other docs that he has been

associated with and that support him. That certainly

helps me feel a lot better.

HTH-

--- Cheryl Lowrance <c.lowrance@...> wrote:

> On Feb 17, 2007, at 11:03 AM, wrote:

>> Thank you, this makes much more sense to me now. I

> see that he's not

> ignoring the labs but using it as a gauge when

> checking eosinphils

> and such. This makes me feel much more comfortable

> and willing. And

> thank you so much for taking the time to explain

> this to me. We were

> already following his diet and removed dairy (after

> the panel). I do

> have another question about this, though. He told

> me no dairy but at

> the same time, he tells me that it's okay if he eats

> crackers like

> ritz (which contains dairy) but not goldfish.

> What's the

> difference? Why are some things okay and others

> not? How do I know?

> >

> > ***** This is not an allergy. This is a measure of

> > how activated the immune system is against foods -

> by

> > IgG not IgE which is the true allergy.

> The only question I have here is the lab stated that

> they tested IgG

> and IgE when I got the results back. How does this

> affect the

> outcome of the labs as far as what is a true allergy

> and what isn't?

> >

> > (and you know to strictly limit strains?)

> No, I didn't. I used culturelle when he was having

> gut issues (too

> much fruit) and was planning on using it again when

> we start the

> Nizoral. He never mentioned to me that culturelle

> was not a good one

> to use so I'm assuming it's okay? When I told him

> we we're using it

> when we first met he said he wasn't at all concerned

> by me using it.

> I do know that it has a trace amount of casein but

> again, he didn't

> seem to care at the time we talked about it.

> >

> > ***** Automatic when gliadin antibodies are

> elevated.

> His gliadin were in the reference ranges so they

> were normal. I got

> this result first and was relieved as I know this is

> a gluten thing.

> I got the allergy panel a month later and forgot

> about this one.

> > But he almost certainly won't be celiac. Your ped

> is

> > simply covering bases.

> Yes, and he said as much. He doesn't think he has

> celiac but just

> wants to make sure we aren't assuming too much.

> > Dr G is treating , and

> > celiac is not related technically.

> No, and that's why I will get tested through the ped

> instead since

> it's really not his area.

> >

> > ***** Trust me, your life will be so much easier

> > following his instructions as opposed to what the

> > current ideas " out there " are. And your child

> stands

> > a better chance of overall healing that way than

> > w/militant diet restrictions.

> It's definitely cheaper!

>

> Thanks again, for helping me understand. I know I

> have a lot of

> questions but I have a hard time blindly following

> *any* doctor. I

> want to make sure that I understand before I just do

> it, especially

> when it comes to my kids.

>

> Cheryl

>

________________________________________________________________________________\

____

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February 19, 2007

Lori,

If Dr. G is only recommending eliminating " brown " rice, you might try Gluten

Free Pantry's OId Fashioned Cake & Cookie Recipe for baked goods. It used

white rice and potato flour and is corn free. They may also have some other

options that would work for your child.

Gaylen

February 19, 2007

I haven't posted in a while but thought that I would chime in on this

one as we are knee deep in allergy " stuff " right now...again/still!

My son has been a patient of Dr. G's for nearly 4.5 years. We

started with an IgE in the 3000's with a RR of 0-60. Before seeing

Dr. G we did go GFCF with great results behaviourally and bring the

IgE down to thelow 2000's. Even though Dr. Goldberg felt with a

Gliadin Antibody within noraml range reference my son could go with

the Do's and Don't Diet, I could never bring myself to give him

wheat, even processed. On occassion when there was no other choice,

I did, but never with favourable results. We have continued on a

tight GFCF diet, also eliminating soy, corn, sugar, food colouring,

nuts, citrus, berries,tropical fruit and pretty much any other

allergin that I have ever heard mentioned.

We have recently been instructed by Dr. G to remove tapioca and brown

rice...Two other " grains " considered highly allergic that Dr. G feels

are " pre-activating " my son so that if/when he has the

occassional " treat " , like canned pears or cantaluope, he doesn't

react as badly. As tapioca and brown rice, along with corn and soy

are often substituted for wheat in GF breads and other carbs, it

makes feeding my son anything other than protein and vegetables, (he

can't tolerate most fruit!)very difficult.

My point is that Dr. G feels very strongly that some of the

substituions made in GF foods can often be just as allergic as the

wheat and other glutens we try so hard to remove.

The whole idea is to forget the strict GFCF regime and think low

allergin to cool the immune system. Dairy is and will always be a no-

no for most of our kids, however the idea of PROCESSED wheat, where

most of the allergins are removed during the processing is felt to be

the less of all the other GF substituted evils.

Now I just have to find the courage to try the processed wheat...

Hope this helps to bring to light some of the allergy " stuff " I have

been working on for nearly 5 years! BTW, my son's IgE is now in the

1550's with " normal " EOS, better, but we obviously have a way to go.

He is a particularly " allergic " /sensitive kid, obviously.

All the best as we continue to try and navigate this maze together...

Lori

February 19, 2007

Hi Gaylen, thanks for the tip. I am in some ways starting all over

again with this diet thing and like you always tried to go for what I

thought was the " healthier " choice of whole grains, or at least brown

rice instead of white. We will try it thanks so much!

Lori

>

> Lori,

>

> If Dr. G is only recommending eliminating " brown " rice, you might try

Gluten

> Free Pantry's OId Fashioned Cake & Cookie Recipe for baked goods. It

used

> white rice and potato flour and is corn free. They may also have

some other

> options that would work for your child.

> Gaylen

>

February 19, 2007

Hi Lori,

My son used to get " reflux " (used to gag and vomit) all the time. It turns

out that it was in the rice milk I was using for his pancake mix was made

from brown rice. Also, the GFCF pancake mix had brown rice. Like magic

his reflux gradually stopped. That was almost two years ago .

Good luck,

Argie