122.celiac Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 8

Re: DH as a celiac symptom: from on 2004-10-18

i was told that I have psorises 8 years ago and have tryed every cream going and none have worked. My aunt has celiac and she thinks that my psorises could be linked to celiac, is psorises linked to celiac

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

Gluten sensitivity without celiacs disease: from on 2004-12-08

My husband has been a diabetic for 30 years, and had stomach cancer removed last year. He has only 25\% of his stomach left. He was dying due to poor food absorbtion, and really wacky insulin metabolism. No Dr. helped, we saw and article on celiac and gluten free diets and thought what have we got to lose. Within two weeks on gluten free food he gained 10 pounds, within a mont and a half his insulin was metabolizing at a normal rate. We wanted to have our son tested for gluten sensitivity. You'd have thought I was speaking greek to the doctors. Finally found one to test him, but before that test even came back he was found to have diabetes too. He is almost 13. His tests for gluten sensitivity came back in the high positive range , but the celiac test came back negative. The Doctor seemed to think I was stupid for wanting my son on a gluten free diet because quote" Why, he doesn't have celiacs disease?" So I'm supposed to keep him on gluten , so that he can develope it later. I also believe that he probably would not have developed diabetes if I had had him on a gluten free diet earlier. He had digestive problems as a small child and migraines and scalp exema. He threw up continually, to the degree that I had to home school him. We had him to a neurologist, and any number of other doctors, no one ever mentioned gluten. Why are doctors ignoring this? Why did no one mention this to my husband? Are there any other people out there who test positive for gluten sensitivity, but have not developed celiacs disease. By the way my husband is anemic and also has thyroid problems and is on synthroid. Has anyone had the thyroid start working properly after time on the gluten free diet? Does the anemia ever get better on the diet? My husband is being treated with procrit for the anemia, but we have had to fight for it!!! He doesn't fit normal criteria to get procrit. Is anyone out there facing these types of problems. Any advice is helpful, Doctores in our town don't know anything about it. Help

Re: any advice for a new mom dealing with celiac: from on 2004-12-08

Get on a gluten fre diet and stick to it. Don't fudge a bit. Even a small amount of gluten can cause autoammuine reactions . On the gluten free diet you should be fine.. Be sure and have the baby tested as early as you can. Probably when it gets on solid food in case it has the gene marker for celiacs. I think all children should be tested at an early age. I never knew about gluten sensitivity till it just about killed my husband and untill my son got diabetes. I only wish I'd known earlier

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: Gluten sensitivity without celiacs disease: from on 2004-12-15

Hi!

I found your post very very interesting. Here is my story:

Type II Diabetes runs in my family - my father has it.

In my twenties, I had my first metabolic symptoms in the form of lactose intolerance.

In my early thirties my doctor informed me that I was not diabetic yet, but likely would be, based on glucose testing, so I began to control my diet more carefully and test my blood sugar levels with a monitor.

In my mid thirties, I developed a reaction to bread, cereals, and other baked goods that appeared to be celiac sprue. I had the antibody tests (IgG? & IgA? something like that) and one came back positive, but the doctor said this was not a clear indicator of Celiac disease. So, I was booked to be violated in a scoping procedure. :D The procedure got moved up, and I was only able to begin the gluten challenge a day before the test, but the specialist said this would be just fine. It came back negative. So, I am not sure if this is conclusive either.

What was conclusive were my symptoms - two days of exhaustion, diarrhea and no digestion of my food commencing about two days after every challenge with gluten. (Piece of bread or bowl of pasta - so a significant amount)

Anyway, I went on an "almost gluten free diet" - no large portions, and mostly 100\% gluten free meals, but maybe once a week I'd have a small amount of gluten - in soy sauce for instance. This has been the case for about 5 years now. The symptoms only returned if I "cheated" repeatedly over a few days.

Three years ago, I began having gout episodes. Two years ago, kidney stones. This last year, two more kidney stones.

Last year I had my regular checkup and the doc diagnosed me with diabetes. So I began taking Allopurinol for gout and Metformin for diabetes in the spring.

Six months later (in the last couple of months) I noticed that something had changed. Cheating didn't have any discernable effect anymore. I have resumed eating gluten and have mild, if any, symptoms now.

I'm thinking that a bunch of different diseases, intolerances, allergies, and/or metabolic disfunctions probably have a similar root. The question for me is which is the foundation problem that needs to be solved to begin a path back to good health?

Also, I need to find someone who deals with this in a research or practical setting to ask questions. Should I have resumed consumption of gluten, or am I putting myself at more risk? I've been finding more material on the internet now that discusses a relationship between CD and diabetes, but nothing sounds conclusive and some doesn't even sound credible. (as expected)

DOES ANYONE out there know of a credible medical practitioner or researcher that is studying or treating the combination of diabetes and CD/GI with a perspective that they may have a root cause?

Thanks in advance for any recommendations you all might have!
Rick

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

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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