Saponins?

Post by **tex** » Mon Mar 28, 2011 9:22 am

Lassie wrote:Question: I still don't know if you are gluten sensitive if you have to be as strict as you do with celiac????

Most of us here who are gluten-sensitive, and who test negative to the celiac blood tests, are at least as sensitive to gluten as the "average" celiac, and some of us are much more sensitive than the "average" celiac, (that is, we have a lower reaction threshold - it takes less gluten to cause a reaction.) It is somewhat rare to find celiacs who react at the 20 ppm gluten level, that's why 20 ppm was adopted as the maximum allowable limit for a "gluten-free" label. (Actually, most celiacs can tolerate up to 50 ppm of gluten, according to Dr. Fasano's research that was published a few years ago.) However, note that some celiacs are also much more sensitive than the "average" celiac, (as demonstrated below).

Conclusions: The ingestion of contaminating gluten should be kept lower than 50 mg/d in the treatment of CD.

Note that in that study, (and in the chart parameters), "MC" stands for "microchallenge", (not microscopic colitis).

http://www.celiaccenter.org/celiac/docu ... 202007.pdf

Note a major flaw in that study, however:

One patient challenged with 10 mg gluten/d showed typical signs of relapse (vomiting, diarrhea, and abdominal distension) after 6–8 wk of microchallenge but refused to repeat the t1 evaluation.

So what do you think they did with that subject's data? Why they threw it out, of course, so that's why the research showed that anything below 50 mg of gluten per day is "safe". (IOW, that level is safe, except for the unlucky individuals who are more sensitive than "average".) If they had included that particular individual's data, the study would have shown that even 10 mg/d was not safe, for 8% of celiacs, (1 out of 13), so they would have had to start over with their research project, and test for a lower reactive range.

If Dr. Fasano had really been interested in establishing a gluten threshold that was safe for all celiacs, he would have scrapped that data, and started over, with new subjects, (and preferably a much larger cohort - 13 people in each group is a mighty low number to be basing such critical statistics on, IMO). He got what he wanted - a cheap research report, but I'm not sure that it's worth much more than the paper it was printed on, unfortunately.

Of course, I have no random, double-blind study data to back up this observation, but IMO, there is probably a higher percentage of people with MC, who are sensitive to gluten at thresholds below 20 ppm, than there are celiacs in that category, FWIW.

Tex

TooManyHats · Post by **TooManyHats** » Mon Mar 28, 2011 10:18 am

sarkin · Post by **sarkin** » Mon Mar 28, 2011 10:18 am

That's pretty compelling, Tex. I wonder whether they do that in drug trials - throw out the person with the most disastrous side effects, and carry on. Sure, they can list the specific symptoms as 'rare' - buried so far below the usual list of symptoms that they can count on people's eyes wearing out before they get there. It's so frustrating the way the whole planet of science is warped by the pressure to come up with answers, at the expense of better answers that take more work/time/money to publish.

As far as figuring out what each of us as individuals can tolerate, since we don't have the ability to run very finely calibrated tests on ourselves (and don't want to - I totally sympathize with the test subject who refused to go on) - I'm calling the "X-factor" (determining who can tolerate 20-50ppm, and who can't tolerate 10) "luck." And I'm not going to assume I got more than my share of luck; I feel more comfortable with the working assumption that my luck has run out ;) That sounds grim, but it makes me feel pretty chipper - like I know what I need to do, and now I just have to be patient and keep on doing it.

Lassie, what's interesting is how varied the list of additional intolerances seems to be. For some people, just a couple of things are problematic, and for others - at least at the moment - it's a very long list. However, the *severity* of the response to whatever the provoking food is may not have anything to do with the *number* of different foods a person cannot tolerate. And I wanted to greatly agree with what you said - that you wish you'd known years ago what you know now. Me, too. I'm not dwelling on how much slower, and possibly less complete, my road to recovery *might* be now, compared to what it *might* have been when I was younger. But it crosses my mind.

Sara

sarkin · Post by **sarkin** » Mon Mar 28, 2011 10:42 am

Tex,

Meant to reply earlier that I didn't know you were writing a book. I think that's a great. I've been interested that 'sleeping on it' has been helpful. I've had that experience both literally (waking up the next morning with clarity on solving a problem, for example), and in going back to projects I had let drift to a standstill. And not only in the realm of words; I find I 'metabolize' piano practice to a surprising degree when away from the keyboard, once I've put in some good initial work.

I wish I'd realized that in college. (Um, or in my 20s or 30s, come to think of it - but glad to be getting there.)

Congratulations on the renewed work and on the excellent progress. I'm going to catch up on archives instead of asking you all about it; look forward to knowing more,

Sara

framedame · Post by **framedame** » Mon Mar 28, 2011 2:09 pm

Thanks Tex for the information and the study. Very interesting!!!! I can only answer for myself, but I have been micro challenged for awhile and adding to it, microscopic C challenged.

BTW I am also avatar challenged. I have shrunk my picture down to almost the size of a dot and have not been able to get it uploaded. As mentioned, I have a MacBookPro and the firewall IS turned off. I've gotten rid of the cookies and logged back on. Also haven't gotten one notification from post by email. I have it checked to notify me when a reply is posted. Am I the only one having this issue? Could it be the Mac computer or is it me???

Post by **tex** » Mon Mar 28, 2011 2:35 pm

Sara wrote:I wonder whether they do that in drug trials - throw out the person with the most disastrous side effects, and carry on.

In all fairness, the subject who "dropped out", was offered an opportunity to redo the gluten challenge, before the researchers discarded that data. I find it kind of unsettling, though, (actually I find it more than a little "biased"), that they would do that, while accepting at face value all the data from all the patients, (why weren't they asked to redo the challenge? - some of them might have had positive results, the second time around).

I've heard that such data "adjustments" are somewhat common in medical research projects, because most of them have a preconceived goal, but I have no proof of that.

As you say, it's usually buried somewhere in the text of the report.

Obviously, I slept on the writing project much longer than necessary. Overnight is usually long enough for the brain to take care of the data storage process, for organizing and filing away any new information learned during the previous day. Retrieving data, and organizing it in special ways, though, seems to take significantly longer, but I have no idea what an optimum amount of time for that process might be.

I discovered long ago, that there was not much point in me sitting around, wracking my feeble brain, trying to remember something that was not immediately forthcoming. It's much easier to review the facts, then sleep on it, and usually, the next morning, (or during the night), the information will just pop right out.

Of course, sometimes, it takes longer than that.

Tex

Post by **tex** » Mon Mar 28, 2011 2:49 pm

Lassie wrote:Am I the only one having this issue? Could it be the Mac computer or is it me???

No, you're not the only one. Usually, the problem boils down to quirks in the particular browser being used, and I know absolutely nothing about Mac browsers, unfortunately. Of course, the e-mail problem could be due to your e-mail provider, (have you ever checked the spam filter at your service provider?). The servers at some e-mail providers automatically tag any e-mails that contain live links, as spam, and they dump those e-mails in the spam bin. The e-mails from the server for this board, of course, contain links back to the thread that is the subject of the notification.

If you will attach an image file, (large enough to be easy to work with), to an e-mail addressed to me, I'll be more than happy to size it to the specs required by the system, and upload it for you, for an avatar, (after I get off work, tonight). If it needs to be cropped, or otherwise adjusted, that's not a problem, either. You can e-mail me by clicking on the "email" button at the bottom of this window.

Sorry for the problems.

Tex

ant · Post by **ant** » Tue Mar 29, 2011 8:25 am

Tex wrote

He got what he wanted - a cheap research report, but I'm not sure that it's worth much more than the paper it was printed on, unfortunately.

Much "medical research" reminds me of interest-conflicted Rating Agencies..... e.g. pre financial melt-down many respected organization bought into Standard & Poor's findings....which I prefer to call 'poor standards' findings......

If mainstream Medical Research also has conflicts of interests (follow the funding money) it too may become a laughing stock.

Best, ant