600.Solution to Celiac - Oral Tolerance 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 on 2004-10-01

Hi-thanks for replying so promptly. My Mum is 65yrs old, is taking salbutamol puffers (twice/day) and has recently started on a steriod (to treat her symptoms of diarrhoea (not sure if its prednisolone or another one). Her 'digestive upset' is a straightforward malabsorption-she has 14-20 bowel actions/day-her recent doudenal biopsy showed totally flattened villi-as if she has never been on a gluten free diet (she adheres to this strictly)....so its more than just an upset stomach-she is literally starving at this point.

She does seem to have improved somewhat in the last week since starting the steriods so hopefully it can give those villi a chance to recover.

Caz

Re: Solution to Celiac - Oral Tolerance: from david on 2004-10-19

Once again, the claims made at this forum are dangerous to celiac disease sufferers as none of these claims have been verified by peer-reviewed scientists or physicians. Please be aware that simply re-introducing gluten into the diet of a celiac, even if they should remain asymptomatic, can result in increased rates of occurrence of lymphoma, and can even lead to a condition known as refractory sprue...where the disease will no longer remit even when on a gluten-free diet.

It is understandable that the celiac sufferer's diet is an arduous one, and that the hope of re-introducing gluten into the diet is something that all celiac disease persons have. I have it also. But we must use caution, common sense, and patience in our search for a cure for this disease, and not jump at untested ideas and theories which have been scientifically disproven and could very well lead to our harm.

Oral tolerance as described by the individual on this website, who is not a physician by his own description, has not been shown to be effective for any method of treatment of celiac sprue. Further, most of the pathogenesis of celiac sprue is mediated through Tissue Transglutaminase, which is cell-mediated and does not act through antibodies, which is what oral tolerance is traditionally used to modify. By his own arguments, our friendly Canadian friend is exposing his own ignorance on the subject of celiac sprue and its pathogenesis, and actually on immunology in general. Do you really want to spend your money on and trust someone who has no credentials, no peer-reviewed evidence for his claims who is trying to SELL his concept (i.e. make money from your illness and pain).

As for me, I will wait on published peer-reviewed evidence or at least on someone with a better understanding of immunology....

David

Re: Solution to Celiac - Oral Tolerance: from on 2004-12-09

Hi,

This thread is interesting, and I can understand Henry's interest in getting the news out to the coeliac community. However, if the news is premature, it is unwanted, IMO.

I personally have a very open mind to alternative medicine, but always prefer to see real research results before I undertake a risk, whether it be monetary risk or worse, a health risk. In other words, if it is free or inexpensive, and can be evaluated to have worked without having to risk poor health, then great. :)

However in this case, it seems you'd have us send you an e-mail now, probably provide our hard-earned $ in exchange for the homeopathic remedy, then take it for some unspecified length of time, and evaluate efficacy based on whether we suffer the debilitating symptoms of the illness less or more than before. Is this pretty much what you have in mind? If so, get lost!

If not, please make your intentions clear. Why are you posting this information here now? How far along is the testing? It was scheduled to be completed by now, right? What kind of testing are you doing?

Henry, you would do well by the community of coeliacs to refrain from publicizing a cure for the illness until you can demonstrate efficacy. Please don't raise false hope in people who are already suffering.

If you do have a cure, please test it, prove its efficacy, and then - THEN - publicize the crap out of it! We will ALL want to hear about it THEN!

Assuming you are well-intentioned, good luck in your research and development!
Rick

Re: Solution to Celiac - Oral Tolerance: from on 2005-01-30

br />
Results:

Of a total of 16 people who took the formula, 3 quit - stopped taking the formula before end of the project.
One subject had no improvement - this party was 63 years old, apparently O.T. response is poor for aging subjects.
The only cures (2) were subjects who had gluten intolerance in its earliest and /or mildest forms.
The rest reported no cures.

These results agree with most research on Oral antigens trials on humans and animals for other ailments.
However, the rest (10 ) reported partial improvement. These took a slice of bread to test the results and admit a noticeable decrease in reaction to gluten in intensity and duration of reaction.
Our worst case was a lady who said she gets symptoms if she took
bread crumbs. Altho she did not get over c.d., her comment was that
she now does not have that same fear she gets at restaurants where food may still contain gluten.

The tests show that oral tolerance does lessen the severity of immune ailments but it has its limits.

The cure is still elusive

Re: Solution to Celiac - Oral Tolerance: from on 2005-01-30

Ok-I now think this is really dangerous and misleading if you are basing 'cures' and 'partial improvements' on symptoms alone-you do not indicate biopsies have been done?

My mother has had what she thought was reasonably well controlled CD (based on her symptoms)-however small bowel biopsy have shown her CD was very poorly controlled. She has just been diagnosed with a very aggressive and poor prognosis t-cell lymphoma which is associaited with poorly controlled CD. (ie coeliacs ingesting gluten either knowingly or otherwise)

I hope the lady that had reactions to bread crumbs reads this and avoids gluten AT ALL COSTS as I would hate her life to be cut short prematurely and painfully just by thinking that she can now tolerate a little bit of gluten.. A little bit DOES hurt and in some cases can lead to your premature death.

caz

Re: Solution to Celiac - Oral Tolerance: from on 2005-02-26

It looks like i've CD.

Is there any way i could get a sample?

Please let me know.

Thanks

Re: Solution to Celiac - Oral Tolerance: from on 2005-02-28

krish ,
kindly let me know how long you've had gluten intolerance,
age, medications, can you tolerate a slice of bread, allergies. etc.?

You may email me at
himmerland2000@yahoo.ca

Re: Solution to Celiac - Oral Tolerance: from on 2005-03-03

br /> Below are articles concerning the safety of Oral Tolerance therapy:


The Role of Immune Tolerance in Preventing and Treating Arthritis
Current Rheumatology Reports 2004, 6:434-441


Page 438
Another potentially interesting approach is based on induction of oral
tolerance to putative antigenic triggers.Mucosal tolerance induction
was first described in 1911 and refers to the observation that mucosal
administration of an antigen induces systemic hypo-responsiveness to
the fed protein . The underlying mechanisms that induce this state
of hypo-responsiveness are largely dependent on the very nature of
the mucosal immune system, a preeminently tolerogenic microenvironment
where T cells circulate. Mucosal tolerance can be induced through the
oral(Oral Tolerance) and nasal route.

Page 440
Autoimmune diseases are all about loss of tolerance, and therapy
should be all about regaining it. Conventional therapies induce tolerance
already nonspecific and with undesirable side effects. A far more
delicate way of inducing tolerance and balancing the immune system
is doing so in an antigen-specific fashion. Immune therapy has
shown to be SAFE and beneficial for patients with autoimmune disease
in several clinical trials. Future research will be directed to new
targets to deviate immune responses in an epitope specific fashion.



Indian Journal of Clinical Biochemistry, 2003, 18(2) 216-222
Page 216
Oral Tolerance is a SAFE and simple treatment strategy, which has been used to suppress Experimental autoimmune encephalomyelitis, AIA and diabetes. This new strategy has
also been used for treating diseases like multiple sclerosis, Rheumatoid Arthritis and uveitis.
View this article at:
http://medind.nic.in/iaf/t03/i2/iaft03i2p216.pdf

Induction of Immune Tolerance to Human Type I Collagen in Patients with Systemic Sclerosis by Oral Administration of Bovine Type I Collagen
Kevin M. McKown, et. al
This report describes the use of oral type I collagen in patients with systemic sclerosis to induce tolerance to type I collagen, an autoantigen in systemic sclerosis. The induction of oral tolerance is of great interest to clinicians because of the potential specificity and SAFETY of this form of therapy. This interest would be especially keen in the case of systemic sclerosis, for which there is currently no effective, safe therapy.
View this article at:
http://www.rheumatology.org/publications/ar/2000/may.asp?aud=mem
Ref. # 1054

Re Solution to Celiac - Oral Tolerance: from Prateek on 2005-04-18

Please send me the details of o.t. As i am also facing the same problem.

Re Solution to Celiac - Oral Tolerance: from Mac on 2005-07-15

Please be aware that virtually everything which Henry has stated in this thread is absolute nonsense and has no basis in science or medicine. His ideas on the mechanisms of coeliac disease and oral tolerance are completely inaccurate and he clearly has little understanding of the subject. It is this kind of rubbish which gets the Internet a bad name for health information. As someone who has worked on the immunology of coeliac disease for more than 25 years, I can state absolutely that there is as yet no role for oral tolerance in its treatment and that IgG antibodies are entirely meaningless in the disease.