119.celiac Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 5

Re: Solution to Celiac - Oral Tolerance: from David on 2004-05-11

Well it never hurt an "alternative treatment" method to be described to its would-be participants. What ever happened to the idea of peer-reviewed science, not blind faith in a "secret potion?" Honestly, your inability or unwillingness to give a better description of your methods and product make you and your motives sound very suspect.
And any treatment that is to be consumed by a person, with the claims you are making, is subject to approval by the United States Food and Drug Administration in order for US citizens to be able to take it, unless you do not officially claim any medical capabilities of your product--alternative or mainstream; doesn't matter what words you use to categorize it.
It is not desirable for celiac sufferers to have their hopes raised nor their wallets raided without some specifics on any treatment--since having a disease makes one a sufferer of an illness, not a subject of experiments for profit

Re: Solution to Celiac - Oral Tolerance: from on 2004-05-13

Researchers have recognized a problem in
Oral Tolerance.
The digestive tract's acid environment in the
stomach, alkaline in the small intestine and
enzymes will certainly change proteins and the
peptide formula - rendering it of no medicinal
value. This problem can not be removed by
increasing the dose.

Researchers have tried to bypass the digestive
tract by applying their formula to the nasal
mucous membranes.

Most research you will find on oral tolerance
use just the peptide. However, there were a few
that added a second ingredient which served the
purpose of protecting the antigen/peptide
from the harsh environment of the digestive tract.

I've found two such experiments using liposomes
and microspheres. These experiments can be found
in "Current Topics in Microbiology & Immunology",
Vol. 146 pp. 51-58 and pp. 59-65 respectively.
Their formula consists of the peptide
in tiny solution surrounded by a globe of the
second chemical serving as
a barrier between their remedy and the digestive
environment.

HOwever, the two above are impractical since
the liposomes and microspheres are unstable and
within a day or two
the two ingredients separate.

My formula is also that, two ingredients.
The 1st is the peptide similar to
gliadin.
The second is a fixative. It of itself does nothing.

The fixative renders the peptide inert and more
resistant to the harsh environment of the digestive
system. The ideal fixative is an organic substance
containing carbon, hydrogen and oxygen. It is
found in animals, man and in food plants and is
safe.

Certainly, some of the peptide may be changed but a fraction will be absorbed
intact and remain active.
I believe, there are other chemicals out there
that may serve the function of protecting the peptide
to keep it active. Our research has simply
found one such chemical which is totally safe.
With all these, the formula is still homeopathic

Re: Solution to Celiac - Oral Tolerance: from s understanding of celiac immunopathogenesis as well. Clearl on 2004-05-17

My background is as a clinical gastroenterologist and immunologist and I have been involved in celiac research for a number of years. I would have to agree with David on many of the points made above.

Much of this so-called oral tolerance/homeopathic remedy disturbs me: Is it FDA approved? What exactly are people asked to ingest? Have you shown the product to be safe? If it is gluten-like, then what will stop it from actually exacerbating coeliac disease? Where are the trials to show it WORKS? ie. that celiacs after "treatment" demonstrate an ability to ingest gluten without symptoms or antibody rise or histologic changes. Has it been compared to placebo? Have you had ethics committee approval for this so-called research?

Currently there is no evidence that a simple oral peptide solution is able to induce tolerance in celiacs, although tolerance induction (almost certainly not via the oral route) will we hope offer a possible treatment in the future.

I have some concerns regarding the and NOT antibody mediated. Antibodies per se are not the CAUSE of villous atrophy, and IgG anti-gliadin Ab is NOT seen in everybody. Treatments will need to address the T cell immunology, not lower the IgG antibody. the mechanisms cited are all recognised ways the immune system may acieve tolerance, but once again, an orally taken peptide has never been shown to do this.

I think the point of this email is to say that any orally taken preparation needs to be thoroughly researched lest it actually worsens the celiac pathology. Further work in this area is always welcome, but grand statements of fixing celiac disease with a simple oral preparation are unwarranted, ungrounded and misleading to the general public

Re: Solution to Celiac - Oral Tolerance: from on 2004-05-18

Please could you send me some important keep feature I must consider when cooking for a celiac

Re: Solution to Celiac - Oral Tolerance: from on 2004-05-19

Hi Holly,

I'm not sure how to answer. How does your question
relate to our formula for celiac/gluten intolerance

Re: Solution to Celiac - Oral Tolerance: from on 2004-05-19

You have to understand that you
should not judge my group on your rules because you belong to
mainstream medicine. Your branch of medicine has it's own
set of rules, my group is homeopathy and it is alternative
medicine.
You can not judge acupuncture and naturopathic doctor's
medicine using the same set of rules as allopathic medicine which is where you belong.

You said
"there is no evidence that a simple oral peptide solution is able to induce tolerance in celiacs"
I disagree with you - you are referring to the majority
of oral tolerance experiments
using only one ingredient , the peptide.
Remember, that I am using 2 ingredients , therefore,
your statement applies to "the one-peptide trials".
It certainly does not apply to our group which uses
two ingredients formula.

As mentioned earlier, oral tolerance is safe and has had trials
on humans. In "Immunology Letters", 68 (1999) pp. 205-212. O.T.
trials were conducted for uveitis - patients received therapy
for 3 months; this article stated "none of the patients
experienced any adverse effects from this treatment".
Then in "Arthritis & Rheumatism", Vol.44, No.8, Aug. 2001,
pp.1775-1781, O.T. trials on juvenile arthritis , patients
were treated for 3 months. Of these patients, 2 were re-treated
for an additional 3 months. These trials would never have been
done if it was hazardous in any way.
There also was a test on diabetes but I leave that to you
to look it up.

"The possiblility of worsening the coeliac condition" I agree with you.

The only danger in oral tolerance,
which is rare is there may be an exacerbation of the condition in celiac disease using O.T.
However, once a trial has been done using oral
tolerance formula and the result has been found to lower the
antibody involved or the symptoms of the disease
has shown improvemt of the condition, then from that
point on, using the same formula will always come out
with the same result - improvement.
I am saying here that once one finds a formula where the results
are a lessening of the symptoms, this result will be consistent in its
outcome, when the treatment is used again and again.
The only thing the formula does is lower antibody to
gliadin in gluten.

When I applied my formula in the beginning, already
the outcome was positive and encouraging in that folks were saying it
improved them,improved digestion and some said their
celiac condition was better, that was homeopathy.
On the basis of the previous trial, we made a test now as homeopathy/oral tolerance , we are still
observing the same results , improvement as well as
cured cases.
As I mentioned, it will take a while before we finish, then
I'll ask some subjects to give their comments as well as relate
about their better health and healing.



You implied that oral tolerance has not shown to fix celiac/
gluten intolerance, then that means that my group's success
and achievement with the formula is a First,
it is unprecedented and folks who were unable to eat
gluten foods can do so now.


Quote:
Antibodies per se are not the CAUSE of villous atrophy, and IgG anti-gliadin Ab is NOT seen in everybody.
May I ask the source for this statement, I'd like
to review the journal

Re: Solution to Celiac - Oral Tolerance: from david on 2004-05-19

The pathology of celiac disease is well-established through laboratory and clinical studies, and clinical physicians and doctoral scientists are in agreement throughout the world that the mechanism involves both plasma cell (antibody-mediated) and T-cell mediated responses in the pathogenesis.

Below are just a few of the 100's of international peer-reviewed medical and scientific journals that corroborates this thoroughly investigated mechanism:


Association between innate response to gliadin and activation of pathogenic T cells in coeliac disease.
Lancet. 2003 Jul 5;362(9377):30-7.

CD69 expression on alpha-gliadin-specific T cells in coeliac disease.
Eur J Histochem. 2002;46(1):13-22.

Abnormalities of Th1 function in non-IgE food allergy, celiac disease, and ileal lymphonodular hyperplasia: a new relationship?
Ann Allergy Asthma Immunol. 2003 Jun;90(6 Suppl 3):84-9.

Intraepithelial lymphocytes in celiac disease.
Am J Gastroenterol. 2003 Jun;98(6):1332-7.

Celiac disease association with CD8+ T cell responses: identification of a novel gliadin-derived HLA-A2-restricted epitope.
J Immunol. 2003 Mar 1;170(5):2719-26.

TNF-alpha production by intraepithelial T cells in celiac disease.
Gastroenterology. 2003 Nov;125(5):1560-1;

Exploring the iceberg--the spectrum of celiac disease.
Am J Gastroenterol. 2003 Mar;98(3):518-20.

[Disease mechanisms in coeliac disease]
Tidsskr Nor Laegeforen. 2003 Nov 20;123(22):3230-3.

Coeliac disease: dissecting a complex inflammatory disorder.
Nat Rev Immunol. 2002 Sep;2(9):647-55. Review.

Heterogeneity of intraepithelial lymphocytes in refractory sprue: potential implications of CD30 expression.
Gut. 2002 Sep;51(3):372-8.

T cells from celiac disease lesions recognize gliadin epitopes deamidated in situ by endogenous tissue transglutaminase.
Eur J Immunol. 2001 May;31(5):1317-23.


There are many more articles beyond these...just do an index search on pubmed of "celiac disease lymphocyte pathogenesis."

Once again, no matter what you call your "therapy," it does not ethically exempt you from fulfilling the burden of proof in making your fabulous medical claims of being able to cure celiac sprue. Without scientific validation and characterization, it may very well be likely that you are giving patients false hope, wasting their money and time, and most importantly endangering their lives. Health care professionals are and should be held to a higher standard, as any therapy carries with it its on set of risks and benefits.

Show us some clinical evidence, peer-reviewed by MD. or PhD scientists who are allowed full access to how you did your work and how to reproduce the results, and then I, for one, will sing your praises to any and all patients I treat with celiac disease, and encourage their participation in your revolutionary cure. Until then, I am going to safeguard my patients, as your benefits are unproven but the risks are very real

Re: Solution to Celiac - Oral Tolerance: from on 2004-05-20

br /> When I started back in 1996-97,
I approached Research Services and the Biomedical
Research facilities, both of which are with the University
of British Columbia.
They turned me down 'cause their policy accepts only
those connected with them.
These 2 are the only med. research agencies in B.C.

I contacted the Celiac research in Ontario, again they
would not take me , I'm not an M.D.

Then I tried Drug manufacturers, to mention a few
Eli Lilly, Pfizer and Merck, altho they were interested,
with time it went nowhere. Lastly, I contacted the
Vice president of Inflazyme, a company right here in B.C.
still negative.

Since, it was homeopathy where I started, I could do it
as homeopathic medicine. This is not by choice but it
was the only path left for me. My purpose is to get
this remedy to those who need it one way or another.

Okay, you are mainstream medicine.
Would you be interested in testing , etc and
evaluating my group's formula

Re: Solution to Celiac - Oral Tolerance: from on 2004-07-03

Why are you all spelling Coeliac wrong??

I would be very interested in a 'cure' for the disease and it seems that the vaccine route is being taken by many.

I would only trust it if approved by the Coeliac Society and they have reported this month on research being carried out in Australia

http://www.coeliac.co.uk/exg/july2004.htm

Re: Solution to Celiac - Oral Tolerance: from on 2004-07-03

br /> It is spelled both ways here in Canada.

As I mentioned, I have approached 2 research facilities in B.C.

The Celiac research in Ontario that I offered my info is part of
the Celiac Society.

it's no fault of mine that they refused to partner with me