Re: Autoimmune antibodies and gluten, was: Question

[Guest guest]

Linn...thanks for all this information. I have celiac disease, and it

took me 2 years on a GF diet for my antibodies to go back down to

normal. My numbers were off the charts 2 years ago. V

The only thing I

> > can find is referenced to lab studies regarding mice which are

induced

> > to develop diabetes that this relates to. No reference to reversal

> > just info regarding certain percentages that did not go on to

develop

> > diabetes......

[Guest guest]

Linn wrote:

> Heidi,

> Thanks for the links, there were a couple there I hadn't read. What

> I meant about being kept quiet was any reference to Type 1 diabetes

> being reversed. Elimination of antibodies is one thing, elimination

> of diabetes is another. As much as I would like to believe that, I'd

> have to see that for myself to believe it. What group were you

> involved with before where you said parents had kids whose diabetes

> reversed?

It only reverses it if there hasn't been much damage. It's more of a

preventative.

That's what makes me angry. If the diet was started *before* the pancreatic

cells were destroyed, then the kid would never have to develop the disease.

Ditto for thyroid patients. I was forwarned, because my sister and mother

had thyroid disease, and since I started the diet, I never did develop

full-blown

symptoms.

But I have heard from one Mom who started the GF diet and

her kid needs *less* insulin, which might mean that some

of the islet cells survived. Also, one of the studies showed that

for the gluten-sensitive kids, going GF helped them thrive more

than they would have otherwise.

> The only studies that I've heard about that involved Type

> 1 resolution were islet cell transplants and they won't consider kids

> for that yet.

I read about that .. the issue, they said, was that they could create

islet cells using stem cells, but that the antibodies would just destroy

them

again. Have they got past that? It seems that if they could

*stop* the antibodies (which the zonulin therapy may well do,

for a lot of people) then the stem cells could be used to create new

islet cells, and that would be a true cure. They know that the antibodies

stop for gluten-sensitive people after 3-6 months on a GF diet: but that

doesn't address what is happening to the other people.

> We are very interested in this because we have our

> daughter's cord blood banked and this may be an option for her in the

> future. Personally I'm interested in the Rife technology or similar

> therapies for treating her in cases of viral infection as that can

> really wreck havoc with her diabetes. Haven't had enough time to

> delve into this yet to decide what to buy though. I did read last

> year about a alternative therapy in India, if I remember correctly,

> that had a small number of Type 1 diabetics that were cured but that

> involved people who no longer had any antibodies, if there were still

> antibodies present, there was no resolution. Some of the studies

> also don't indicate whether they are talking about patients that have

> developed diabetes yet or just have antibodies. I know that diet can

> have a huge influence on Type 1 diabetics and I wish that researchers

> would focus more on this issue. My daughter still uses only about

> half the amount of insulin that a diabetic her age and size would

> normally require. She is on a whole foods diet with very little

> processed food, no soybean oil, no fluoride, mostly organic and lots

> of water. Her doctors kept telling us to begin with that she was

> just in what they call the honeymoon phase and that would only last

> for a short while, 2 years later she's still in that honeymoon

> phase. I will pass on the info regarding Crone's to my MIL. She

> eats a lot of bread and other processed items and sticks with " soft "

> items that have no nutrition.

>

It might be interesting to get your daughter tested for blood zonulin. That

looks like it may be the trigger for antibodies. Figuring out what triggers

the zonulin is another research project, but I'm certainly buying stock in

Alba when they go public! Sounds like you are doing a great

job with the diet: I know how hard that is and you deserve kudos!

-- Heidi

[Guest guest]

Heidi, Regarding the islet cell transplants, they've only done a handful of patients.  Last I checked, they were past a year and still insulin free.  They had been diabetic since childhood though and no antibodies involved.  I know there are several studies going on now that are working with families with known risk factors for prevention, either mothers or fathers that are Type 1 or families that have a Type 1 child and are pregnant again. They used to test siblings whenever one child in a family was diagnosed to assess for risk factors, but they don't do that anymore as it was not a good indicator of developing the disease.  I think the celiac risk is the same, the child may be producing antibodies but they still don't know what the trigger is.  You can have the antibodies but not develop the disease.  Since there is no definitive way to predict, they don't like to freak out the parents regarding the other children.  In other words they can't give you better odds than the percentage that the other children are at risk for just because a sibling has been diagnosed.  For instance in our family both of my boys have the same HLA gene sequence that the girls had, yet no problems with the boys, only the girls.  We were all typed when my older daughter was ill to see if any of us were a possible match for a bone marrow transplant.  My oldest son is basically risk free for Type 1 at this point as he is over 20, the younger son still has just under a couple of years to pass that point.  We have no history of Type 1 in our family, but we do have a history of other autoimmune diseases in myself, my other daughter, my mother and my MIL, which is a common factor in kids who develop JD.  Usually it's one of the thyroid diseases, Crohn's, etc.  Linn      On Jul 22, 2006, at 12:23 AM, Heidi wrote:Linn wrote:> Heidi,> Thanks for the links, there were a couple there I hadn't read. What > I meant about being kept quiet was any reference to Type 1 diabetes > being reversed. Elimination of antibodies is one thing, elimination > of diabetes is another. As much as I would like to believe that, I'd > have to see that for myself to believe it. What group were you > involved with before where you said parents had kids whose diabetes > reversed? It only reverses it if there hasn't been much damage. It's more of a preventative.That's what makes me angry. If the diet was started *before* the pancreaticcells were destroyed, then the kid would never have to develop the disease.Ditto for thyroid patients. I was forwarned, because my sister and motherhad thyroid disease, and since I started the diet, I never did develop full-blownsymptoms.But I have heard from one Mom who started the GF diet andher kid needs *less* insulin, which might mean that someof the islet cells survived. Also, one of the studies showed thatfor the gluten-sensitive kids, going GF helped them thrive morethan they would have otherwise.> The only studies that I've heard about that involved Type > 1 resolution were islet cell transplants and they won't consider kids > for that yet. I read about that .. the issue, they said, was that they could createislet cells using stem cells, but that the antibodies would just destroy themagain. Have they got past that? It seems that if they could*stop* the antibodies (which the zonulin therapy may well do,for a lot of people) then the stem cells could be used to create newislet cells, and that would be a true cure. They know that the antibodiesstop for gluten-sensitive people after 3-6 months on a GF diet: but thatdoesn't address what is happening to the other people.

[Guest guest]

Linn wrote:

> Heidi,

> Regarding the islet cell transplants, they've only done a handful of

> patients. Last I checked, they were past a year and still insulin

> free. They had been diabetic since childhood though and no antibodies

> involved. I know there are several studies going on now that are

> working with families with known risk factors for prevention, either

> mothers or fathers that are Type 1 or families that have a Type 1

> child and are pregnant again. They used to test siblings whenever one

> child in a family was diagnosed to assess for risk factors, but they

> don't do that anymore as it was not a good indicator of developing the

> disease. I think the celiac risk is the same, the child may be

> producing antibodies but they still don't know what the trigger is.

> You can have the antibodies but not develop the disease.

Actually with celiac, the deal is that if you have the antibodies, you

are at risk for developing a lot of diseases. celiac is just one of

them: only 10% or so of the folks with antibodies develop celiac, but

the other ones can (and from the stats, it seems they usually do, sooner

or later) develop some other autoimmune disease. It's just a matter of

how long the organs 'hold out' against the antibodies.

Since the preventative is basically 100% effective, and pretty simple

(esp. as more and more people get diagnosed so the food choices are

changing in society), it just makes sense to give parents the choice. I

mean, if I told you that if you eat radishes daily, you have a 10%

chance of developing cancer, would you insist on not being told because

it might freak you out? Most people who smoke cigarettes never develop

cancer, but nonetheless, most of us choose not to smoke them. And I

don't know what " risk factors " they were looking at, at the time, but

the tests I'm talking about seem to be very good indicators of whether

or not a person will develop T1.

Anyway, the person I was thinking of has T1, and so do both of her

children. She was never told there was anything she could do about her

kids: just, it's a genetic thing, if they get it, they get it. But

watch: now that they have a pill (rather than a diet, because no one

likes diets), you'll see a big change: there will be a push to prevent

the antibodies in the first place. Which isn't a bad thing, though

getting the kids on a decent diet would be better.

> Since there is no definitive way to predict, they don't like to

> freak out the parents regarding the other children. In other words

> they can't give you better odds than the percentage that the other

> children are at risk for just because a sibling has been diagnosed.

> For instance in our family both of my boys have the same HLA gene

> sequence that the girls had, yet no problems with the boys, only the

> girls. We were all typed when my older daughter was ill to see if any

> of us were a possible match for a bone marrow transplant. My oldest

> son is basically risk free for Type 1 at this point as he is over 20,

> the younger son still has just under a couple of years to pass that

> point. We have no history of Type 1 in our family, but we do have a

> history of other autoimmune diseases in myself, my other daughter, my

> mother and my MIL, which is a common factor in kids who develop JD.

> Usually it's one of the thyroid diseases, Crohn's, etc.

Right, and there's a gene involved in the zonulin-type reactions, so it

would make sense not all the kids have it. But if the kid *is* having a

zonulin-type reaction (which would be a simple blood test), then rogue

proteins are leaking into their blood and it will cause problems sooner

or later. It's a lot easier to fix the problem before permanent damage

occurs.

I'm glad to hear though, that they are at least working on preventative

measures!

-- Heidi

[Guest guest]

Heidi, The preventative wouldn't be 100% effective for people developing Type 1 though.  Only about 10% of Type 1 patients have celiac.  I don't know the percentages but there are many people with celiac who don't develop diabetes or other diseases.  There's still the elusive triggers.  The screening they used to do wasn't a good predictor for whether siblings would develop diabetes, no better than what they already knew as far as statistics for developing it.  You can have it done if you want, it's just not done routinely.  I must be missing something because I haven't read anything about specifics tests regarding humans.  The studies I've read had not gotten to that stage yet.  Hopefully this will turn out to be an indicator.  I keep hoping to hear some good news regarding research in diabetes and on aplastic anemia.  There's interest in this disease only because it relates to cancer patients.  Aplastic anemic states are created when patients undergo chemo.  When my daughter was ill there was a lot of research going on regarding manufacturing blood cells.  She died at the age of 5, over 9 years ago now and the research has not progressed much, the interest is only in more drugs.  I understand your frustration and anger more than you can ever imagine.I honestly don't know what all the research is for those who are participating in studies for newly diagnosed or those families involved with pregnancies or new babies with an immediate family member risk.  Have been researching too many other things lately.  I think the main interests are still only drug related and unless it's something that going to be a money maker for the real mother load of Type 2 diabetes, I honestly don't think it's going to get a lot of interest.  It's the same for stem cell therapy, IMO it's a fight over who will get the profits.  It's all about the money.  The powers that be don't give a damn about children suffering with horrible diseases like aplastic anemia or living with chronic diseases like JD.  Check out the history of how Eli Lilly got the rights to insulin, it's the same with many other stories in medicine, profits above all else.  Linn    On Jul 22, 2006, at 12:40 PM, Heidi wrote:Linn wrote:> Heidi,> Regarding the islet cell transplants, they've only done a handful of > patients. Last I checked, they were past a year and still insulin > free. They had been diabetic since childhood though and no antibodies > involved. I know there are several studies going on now that are > working with families with known risk factors for prevention, either > mothers or fathers that are Type 1 or families that have a Type 1

[Guest guest]

You may be confusing issues. Diabetes is not always

Diabetes as most people know and envision it. There are two

distinct types which are entirely different though the end

result is the same. Type I , which we used to call Juvenile

Diabetes usually shows up early in life as it's name

suggests. The pancreas is incapable to producing sufficient

insulin or enough insulin needed to metabolize sugar in the

cells of the body. Which is why sufferers much take insulin.

Type II, or what we used to call Adult Onset Diabetes

usually shows up in middle age. Of course now we have the

problem where this kind of diabetes is showing up in children

and teenagers. In this type of Diabetes the pancreas is

perfectly capable of producing as much insulin as the body

needs and the pancreas functions normally. The problem is

that the cells of the body ''resist'' entry of insulin into

them thus creating the same problem as with Type I diabetes,

insulin cannot get into the cells to metabolize sugar.

If the condition persists for a long time, say years for

example, the pancreas will produce even more insulin in an

attempt to get needed insulin into the cells and at this

point the pancreas may wear out and fail. If that happens

then these type II diabetic sufferers will be in the same

situation as those with type one diabetes. At that point the

diseases will be identical.

It's become increasingly apparent that Type II diabetes

can be reversed by changing diet and losing weight as the

other writer suggested as the condtion is brought on by

dietary habits and weight gain. Type I diabetes is a birth

defect and cannot be controlled or reversed with diet. The

point is the writer is correct that Type II diabetes can be

reversed by eliminating the conditions that brought it on

i.e. obesity and the large intake of carbohydrates. There is

also some speculation , although not proven that consuming

trans-fats, hydrogenated and partially hydrogenated oils are

also contributing to this condition.

Prior to 10,000 years ago diabetes served a function as

it allowed people to survive during times of scarcity .

Having the ability to fast for weeks at a time was a survival

advantage enjoyed by those with the trait over those who did

not share it. Just as it is today in primitive societies. At

least those that are left like the Bushmen of the Kalahari

Desert in South West Africa, or, Namibia.

Today, having the genetic makeup of a potential diabetic

in a world where people are stuffing themselves silly with

food not only is not an advantage, it's detrimental to their

health. Many people have controlled Type II diabetes simply

by losing weight, getting exercise and controlling what they

eat. Of course the propensity for it to return is always

there as it's part of their genetic makeup, but so long as

people know they have the trait and eat, exercise and watch

what they eat accordingly, they can live normal lives with no

symptoms and no need to take any kind of drug. This is well

established in the literature.

The problem is that most people with this trait want to

eat and get no exercise just like their peers and that is

when they run into trouble. Some people cannot help

themselves and have compulsions to eat and overeat. Which is

actually quite normal too as the genes that make people

susceptible to Type II diabetes are part of our biological

past when it was wise and necessary to stuff oneself during

times of plenty in order to be ready and prepared for times

of famine or when what was hunted or could be gathered was

scarce. Unfortunately for such people there is no famine

today and none on the horizon. Thus all they end up doing is

gaining weight and putting themselves at risk of expresing

the dark side of having this genetic prepensity to develop

Type II diabetes.

We have been on this earth in present form for over 100

thousand years but we have been farming for only the past 8

to 12 thousand years. Having all of this food whenever we

want to have it is a relatively new phenomenon in human

history.

People who are prone to Type II diabetes can get to the

point where they will not express it as I said through diet

and exercise but of course they will always have the trait

and it will express itself should they not do the things

necessary to prevent it's expression. The other writer is

correct too that the disease in never eliminated in the sense

that the trait goes away and people who had it can then go on

and live like other people. The fact is they can never be

like other people in terms of diet and their exercise habits.

They can be like other people in every respect so long as

they do pay attention to their diet and exercise habits. So

essentially both writers are correct as although the sufferer

can be outwardly cured, the trait it's always there. What

does go away is the expression of the disease in the form of

what we know as diabetes.

BOB

__________________________________________________

[Guest guest]

Linn wrote:

> Heidi,

> The preventative wouldn't be 100% effective for people developing Type

> 1 though. Only about 10% of Type 1 patients have celiac. I don't

> know the percentages but there are many people with celiac who don't

> develop diabetes or other diseases. There's still the elusive triggers.

The thing is, with celiac, the triggers are " elusive " because they are

basically mythological. What happens is that the gut gets attacked with

every meal, and after some amount of time it gets bad enough that it

shows up on celiac tests. And even AFTER it is that bad, 7/10 of the

time there are no symptoms, and for the people who are symptomatic, it

takes an average of 11 years to get diagnosed. The test that should be

done is " Is the gut getting attacked " ? Not " Is the damage bad enough yet

we can call it celiac " .

What I'm saying is, a similar situation exists with IDDM. If the

pancreas is getting attacked, then it is getting attacked. How long it

will hold up is another matter. The " attackers " can, in the case of

IDDM, be measured:

http://care.diabetesjournals.org/cgi/content/abstract/20/6/965

The presence of two or more^ antibodies in addition to ICA or IAA

conferred high risk (61%) for^ development of IDDM within 5 years of

entry into the study and identified^ 89% of those who have developed

IDDM on current follow-up.

I don't know what the stats are otherwise for siblings, but 89%

predictivity sounds pretty good?

> There's interest in this disease only because it relates to cancer

> patients. Aplastic anemic states are created when patients undergo

> chemo. When my daughter was ill there was a lot of research going on

> regarding manufacturing blood cells. She died at the age of 5, over 9

> years ago now and the research has not progressed much, the interest

> is only in more drugs. I understand your frustration and anger more

> than you can ever imagine.

I can imagine. I think the anger of parents is what is driving a lot of

the newer " take

your health into your own hands " push, which is to the good, I think. Esp.

with the Internet! My son has major issues, and most of the strides we've

made have been basically me on the keyboard.

> I honestly don't know what all the research is for those who are

> participating in studies for newly diagnosed or those families

> involved with pregnancies or new babies with an immediate family

> member risk. Have been researching too many other things lately. I

> think the main interests are still only drug related and unless it's

> something that going to be a money maker for the real mother load of

> Type 2 diabetes, I honestly don't think it's going to get a lot of

> interest.

There was an endocrinologist at Dr. Fine's conference talking about

diabetes. He had slides of the pancreatic damage that is done, and he

feels the T2 and T1 are both related to the pancreatic damage to the

beta cells (which again, is often mediated by IgA allergies). I agree

about the drug-related stuff: it doesn't get advertised until there is a

drug for it. There are 2 drugs set to come out shortly though, and THAT

will advertise the drug-cure, anyway. Which might mean people talk about

the causes more.

> It's the same for stem cell therapy, IMO it's a fight over who will

> get the profits. It's all about the money. The powers that be don't

> give a damn about children suffering with horrible diseases like

> aplastic anemia or living with chronic diseases like JD. Check out

> the history of how Eli Lilly got the rights to insulin, it's the same

> with many other stories in medicine, profits above all else.

Tell me about it. Ditto for our entire food chain. The food in the

grocery store is all " what is subsidized " , and " who has the best ads " .

There is nothing in our mode of economics or government that is about

" what is good for the people " or " what is socially responsible " .

I did hear a story about how parents got together over the Internet and

hired *their own* researcher. With the idea that anything said

researcher discovered, they would keep the patent. And a lot of these

diseases have very simple cures ... rickets and goiter used to be major

problems, but both are easily prevented. Hundreds of minds thinking

together in groups like this are often what find the solution ... I've

been amazed at how many issues we *don't* have any more in our family,

due mainly to simple cures from listgroups. Like sinusitis and iodine ...

-- Heidi

[Guest guest]

Heidi, I'd agree with all that.  I know there's been a link to milk and Type 1 which would lend the same credence.  I truly do think that many of the autoimmune diseases are caused or heavily influenced by this type of toxemia.  My daughter has her quarterly appointment next week, I'll make sure and have her checked again for celiac.  I don't remember seeing where they checked her since diagnosis.  Somebody else I know suggested that I might try and eliminate gluten also to see if makes a difference for me, so I think we may just do a little experiment and eliminate it and see what happens with her TPO antibodies.Linn      On Jul 23, 2006, at 1:04 PM, Heidi wrote:Linn wrote:> Heidi,> The preventative wouldn't be 100% effective for people developing Type > 1 though. Only about 10% of Type 1 patients have celiac. I don't > know the percentages but there are many people with celiac who don't > develop diabetes or other diseases. There's still the elusive triggers.The thing is, with celiac, the triggers are "elusive" because they are basically mythological. What happens is that the gut gets attacked with every meal, and after some amount of time it gets bad enough that it shows up on celiac tests. And even AFTER it is that bad, 7/10 of the time there are no symptoms, and for the people who are symptomatic, it takes an average of 11 years to get diagnosed. The test that should be done is "Is the gut getting attacked"? Not "Is the damage bad enough yet we can call it celiac".

[Guest guest]

Linn wrote:

> Heidi,

> I'd agree with all that. I know there's been a link to milk and Type

> 1 which would lend the same credence. I truly do think that many of

> the autoimmune diseases are caused or heavily influenced by this type

> of toxemia. My daughter has her quarterly appointment next week, I'll

> make sure and have her checked again for celiac. I don't remember

> seeing where they checked her since diagnosis. Somebody else I know

> suggested that I might try and eliminate gluten also to see if makes a

> difference for me, so I think we may just do a little experiment and

> eliminate it and see what happens with her TPO antibodies.

>

> Linn

The celiac tests are pretty useless in this regard, is the problem. The

only tests so far that are close to useful are Dr. Fine's stool test

(since the antibodies are primarily in the gut, not in the blood), and

the zonulin test (and I don't know where you can get that). Dr. Fine's

tests are available mail order though, and he can test for milk, eggs,

soy, etc. too,

which is useful because I think it's likely that casein is more of a

problem than gluten for T1, and I know one person who reacts mostly to

eggs. His tests are at www.enterolab.com: some docs will order them,

and he's getting more and more converts in the doctor crowd.

" Gluten elimination " is what I did, and I kind of lucked out because my

symptoms turn out to be pretty easy to recognize, being a type of rash

that shows up an hour after eating it. But most people don't get

symptoms, and healing can take months. Still, if you can measure the

antibodies easily that could work.

-- Heidi

[Guest guest]

>

> Skipper,

>

> You're right, it was commonly referred to as sugar diabetes. I have

> a lot of older relatives and they still refer to it as that. There's

> just way too much evidence that this was commonly known and chosen to

> be ignored.

Gee, we talk about it, and then Mercola mentions why " sugar " was

removed from terminology.

QUOTE

http://www.mercola.com/2006/jul/22/debate_about_dangers_of_high-fructose_corn_sy\

rup.htm

Ask Willet why " sugar diabetes " is no longer a term in the medical

lexicon. The answer is western medicine has known since 1924 sugar and

refined sweeteners cause or trigger diabetes, yet the AMA cut 'sugar'

out of the diabetes description in the early '60s because they knew

they could make more money on treatment, not prevention or cure ...

They have betrayed The Hippocratic Oath -- " First, Do No Harm ... "

UNQUOTE

I certainly believe it.

Skipper