Celiac Treatment Research

[maile]

I have to admit I'm skeptical for a couple of reasons, first given how darn difficult it is to diagnose and how few have actually been diagnosed I'm surprised they'd be able to find a "cure" for something they can't even identify in 2/3 people.

secondly the whole "injecting with gluten" part of the trial....there have been huge debates in this forum alone on the topic of whether one can be affected by gluten if it isn't digested/ingested through the GI system. in fact I'd understood (and am totally aware I could be mistaken) that the antibodies only show in the blood when there is sufficient villus atrophy to cause a leak into the blood. And, in order to figure out if the vaccine works they're going to use blood tests (which appear to be reliable only when celiacs are at or near the end stage of the disease) to diagnose whether or not you are being affected???

I'm not a medical professional so I could be missing something but it just seems a bit odd.

[LandonL]

I have to admit I'm skeptical for a couple of reasons, first given how darn difficult it is to diagnose and how few have actually been diagnosed I'm surprised they'd be able to find a "cure" for something they can't even identify in 2/3 people.

secondly the whole "injecting with gluten" part of the trial....there have been huge debates in this forum alone on the topic of whether one can be affected by gluten if it isn't digested/ingested through the GI system. in fact I'd understood (and am totally aware I could be mistaken) that the antibodies only show in the blood when there is sufficient villus atrophy to cause a leak into the blood. And, in order to figure out if the vaccine works they're going to use blood tests (which appear to be reliable only when celiacs are at or near the end stage of the disease) to diagnose whether or not you are being affected???

I'm not a medical professional so I could be missing something but it just seems a bit odd.

So are you saying that if someone tested positive on the blood test they are at or near the end of the disease? and what does that mean, what do you mean by end of the disease? I tested positive through prometheus blood testing. I also had a biopsy, and My GI told me I had a marsh score of 1 which he told me was good cause that meant we caught it eary, so you have me confused.

[maile]

So are you saying that if someone tested positive on the blood test they are at or near the end of the disease? and what does that mean, what do you mean by end of the disease? I tested positive through prometheus blood testing. I also had a biopsy, and My GI told me I had a marsh score of 1 which he told me was good cause that meant we caught it eary, so you have me confused.

sorry about that, as I said I'm not a medical professional! I should have said "end stage of the disease" (this is not like end stage of cancer, rather you can be sick for years while ingesting gluten but until you show some sort of damage to the villi you cannot be diagnosed as a celiac)

so as not to confuse you any more here's some links about diagnosis of celiac, stages of the disease and reliability of blood tests:

Open Original Shared Link

Open Original Shared Link

This Link and this other link explain it much better than I ever could.

[Lisa]

Open Original Shared Link

This article is about Dr. Kenneth Fine. He is discussing testing through his company and markets to those who's conventional testing has not provide positive results through serologic testing. Enterolabs test via stool testing.

Although many people here have used his services and are strong supporters of Enterolabs, there may be better articles relating to blood testing.

Positive Serological testing is not an indicator that a person is at the end stage of Celiac Disease. Rather, it provides information that your body is reacting to the presence of gluten, by creating antibodies.

Here is some information:

Open Original Shared Link

[maile]

Positive Serological testing is not an indicator that a person is at the end stage of Celiac Disease. Rather, it provides information that your body is reacting to the presence of gluten, by creating antibodies.

Here is some information:

Open Original Shared Link

Thanks for clearing my confusion!

[Lisa]

Thanks for clearing my confusion!

There is a lot to learn about this stuff. I learn something every day.

[caek-is-a-lie]

I think the entire notion of "building up a tolerance" is pure rubbish. I would point out, that many on this board have noticed an increased sensitivity to gluten after being gluten-free for a while. However, the damage to the intestine had still been occurring before the change in diet. Only the appearance of outward symptoms were suppressed.

Well, I do believe there is evidence that desensitization works in some cases. And this group found positive results in doing this treatment in mice. Of course, mice aren't humans, so we'll see how the human trials go. They indicate the treatment takes months to complete.

My issue with the whole thing is in calling it a "vaccine". It's not a vaccine. A vaccine is injecting modified or killed virus into your body that you have not been previously exposed to so that you can make new antibodies against it to fight it off when you are eventually exposed to the illness.

Gluten is not a virus and our whole problem is we already make antibodies against it which then attack our own cells. So this treatment is more like an antivaccine, really. I wish they would just call it what it really is...gluten desensitization. "vaccine" is so misleading! It's not like you get one little shot and you're cured.