Dr. Fasano

[JLH]

I finally was able to go to my local GIG meeting. I enjoyed it.

Here's is what the leader said about Dr. Fasano:
"I would contend that Dr. Fasano has pointed out both the inaccuracies of what he was taught in med school, as well as some of his own previous assertions. Many physicians refuse to admit ...that they were dispensing erroneous information. I respect Dr. Fasano’s admissions (see the October 2010 issue of Gastroenterology and Endoscopy News) and his continuing contributions to the field."

She shared this link. http://www.glutenfreeliving.com/Browse/ ... erview.pdf

[tex]

He's sounding a little more human all the time, but I still have a lot of trouble accepting his theories, (especially the parts that I have highlighted in red, below). He has admitted, (finally), that he was wrong before, and it is painfully obvious that he is wrong again, in view of his claims quoted here, (from the More from Dr. Fasano on GF issues section of the article:

AF: We get this question about gluten sensitivity all the time. When people come to the center, they say, “I have to be on the gluten- free diet so why do I care what I have?” Well there are tremendous differences there.

With one, celiac disease, you are going to have it for life. It is an autoimmune disease. It will not go away. You can’t eat even a crumb. Your system will perceive it like you ate a whole loaf of bread. With gluten sensitivity, that’s not necessarily so.

You may grow out of gluten sensitivity. Celiac disease has a genetic component so it can affect the rest of the family. Gluten sensitivity does not.

With celiac disease, if you make a mistake, not only do you pay the price on the spot because you get sick, but it contributes to co-morbidities. With gluten sensitivity that is not necessarily so. If you make a mistake you pay the price, but nothing will happen to you over time. You definitely need to know where you fall on the spectrum.

With gluten sensitivity, that’s not necessarily so.

It may not be true in 100% of cases but it is definitely true in the vast majority of cases.

You may grow out of gluten sensitivity.

Now wouldn't that be nice - if it were only true.

Gluten sensitivity does not.

That statement is totally false - he simply refuses to recognize the proof offered by the genetic research of Dr. Kenneth Fine, Dr. Maios Hadjivassiliou, and others, over a decade ago.

With gluten sensitivity that is not necessarily so. If you make a mistake you pay the price, but nothing will happen to you over time.

I wish my body had been aware of his brilliant claim years ago, maybe it wouldn't have all this permanent damage that has accrued over the years.

It's interesting that Alba is "dead in the water". If this is such an awesome product, why would anyone put it on hold, after such an aggressive start? A poor financial environment is not going to keep people from buying pills, (if they work), because most people love to solve all their troubles, simply by popping a pill. Maybe some of the trial results weren't as great as we've been lead to believe.

Thanks for the link.

Tex

[JLH]

Thanks for your info. I guess I will have to post it as a Facebook note.

[dgshelton]

At what point does one "grow" out of gluten sensitivity? And what about gluten sensitive people being able to eat a little bit of gluten not have any consequences. A little bit of arsenic probably wouldn't hurt you either, but I'm sure not going to test that theory. It really gets me that he admits he was wrong and then turns right around and makes more erroneous claims that, no doubt, in the future he will have to admit were wrong. I guess he didn't learn anything from being proven wrong the first time.

Hugs,

[tex]

Tex

[mbeezie]

I spoke with Dr. Fine a few weeks ago on this very subject. He said that sometimes when kids hit puberty their symptoms go into remission, but they always return in their 20's or later. I can see that with my almost 12 year old. He is not getting the reactions he once got when he cheats. But I know trhe symptoms will return so I am constantly reminding him of that.

Mary Beth

[dgshelton]

Mary Beth - I read somewhere about gluten intolerance going away during your teen years. That certainly would make sense with me. I reacted as a kid but then it went away until I was 25.

Hugs,

[TooManyHats]

I have a strong desire to print this out and give it to my GI. He said "gluten sensitivity" and "spectrum". Unfortunately, I know I'd be wasting my time.

[Deb]

He indicates that he now believes you need four out of the five markers to be considered celiac. So if you don't have the celiac gene you would have to test positive with the biopsy, as I'm understanding this, to reach four markers. Has anyone here tested positive with the biopsy and not had the celiac gene? Do you think there's a likelihood that some of us would have eventually tested positive with a biopsy had we continued eating gluten?

[tex]

Deb,

As far as I am aware, no one has done research to analyze the percentage of patients with MC, (or celiac disease), who have a significant Marsh score, (above Marsh 1), but who do not have one of the common celiac genes. It is known that a few percent of celiac patients do not have either of the common celiac genes, (DQ2 or DQ8), so those genes are not absolutely essential to the development of celiac disease. Remember, also, that approximately ninety-seven percent of Americans with celiac disease are undiagnosed.

Quite a few patients with MC have significant small intestinal villus atrophy, even though they do not qualify for a celiac diagnosis, by the classic criteria. According to Dr. Fine's research, for example, 43% of MC patients show mild inflammation of the small intestine without villous atrophy, (Marsh score of 1), and 27% show inflammation plus partial or subtotal villous atrophy, (Marsh score of 2 to 4). However, this cohort of test subjects had assorted genes - IOW, some had celiac genes, while some did not. The full report might possibly show the relevant details, sorted by genetics, but that information is not indicated in the abstract.

http://www.ncbi.nlm.nih.gov/pubmed/10950045

Also, note that it appears to be possible to accurately diagnose celiac disease simply by counting the intraepithelial lymphocytes in the mucosa of the small intestine, in the same way that they are counted in the mucosa of the colon, when diagnosing LC. Positive serology is not necessary, nor is the presence of significant villus atrophy. Of course, Dr. Fasano pretends to be totally unaware of this diagnostic possibility. This would be a Marsh score of 1, which many celiac doctors do not recognize as celiac disease.

Results: The mean villous tip IEL scores were 4.6 (SD, 1.5; range, 1.4–7.8) in non-coeliac controls, 7.9 (SD, 4.0; range, 2.0–18.6) in TCD, and 9.2 (SD, 4.7; range, 5.8–21.8) in patients with PCD. The difference between PCD and non-coeliac controls was significant.

Conclusions: This is a very simple and sufficiently reliable method to count IELs. In patients with an architecturally normal duodenal mucosa, the IEL count in villous tips helps to distinguish between patients with PCD and non-coeliac controls.

http://www.ncbi.nlm.nih.gov/pmc/article ... t=abstract

IMO, if Dr. Fasano wanted to be open to a "4 out of 5" diagnostic criteria option, then he should acknowledge the validity of a stage 1 Marsh score, as one of the diagnostic-qualifying possibilities, instead of requiring a minimum Marsh score of 2. This would presumably qualify 70% of MC patients for a CD diagnosis, right off the bat. (Currently, only 27% qualify).

Of course, he also needs to acknowledge the validity of the stool tests, to take the place of the woefully inadequate blood tests, as part of this "change of game plan". Note that in that interview, he pointed out his "new" perception of the celiac syndrome:

Now my major aim is to change the name from celiac disease to celiac condition. I really don’t want to have the word “disease” in there.

Now it's a "celiac condition". Perhaps, in a few years or so, (as he slowly acknowledges his short-sightedness), he will be changing the name to "gluten-sensitivity spectrum", just as we've maintained, all along. At any rate, I'm glad that he's finally making some significant progress in his public position on the gluten-sensitivity spectrum.

Tex