A News Flash From The Mayo Clinic :shock:

[tex]

Hi All,

Mary Beth alerted me to the fact that the Mayo Clinic has released a "White Paper" describing their updated recommendations for diagnosing celiac disease. The local CSA sent a copy to her, and she sent a copy to me.

Since it's titled, "Update on Celiac Disease: New Standards and New Tests", I eagerly read it, expecting to see some worthwhile changes in their position on diagnosing and treating the disease, and possibly an acknowledgment of non-celiac gluten sensitivity. Silly me - there's nothing in it of any significance - it's the same old narrow-minded view of the disease that they've always had. Why they bothered to pretend that they were issuing some sort of newsworthy announcement, is beyond me. I suppose they feel as though they need to present an image suggesting that they are making progress, (even though they obviously aren't making enough progress to be worth mentioning).

Not wishing to be accused of plagiarism, I can't copy their "White Paper" here, and I can't find a copy of it available for viewing on the web, (it seems strange that they haven't posted a copy - why wouldn't they post it?), but you can request a copy from their website, if you wish, (I suppose requiring people to specifically request a copy makes them feel as though it is somehow more important - or maybe they're just collecting contact information on people, to sell for advertising purposes ):

http://www.mayomedicallaboratories.com/ ... index.html

http://www.mayomedicallaboratories.com/ ... -form.html

Anyway, as you can gather by reading this, I was very disappointed, (as was Mary Beth, I assume), that they would go to the trouble of issuing a "White Paper", updating their position on celiac disease, which doesn't appear to even suggest that they are making any significant progress in their handling of the disease. The average length of time to get a diagnosis of celiac disease in this country, is still 10 years. Of course, that shows a slight amount of progress, because about 10 years ago, the average time for a correct diagnosis was still listed at 13 years.

Tex

[collagastritis84]

Yes it does seem to be more the same narrow mined ideas but i did notice they have a test listed for patients already on a GFD. What do you make of that? Is that a first for the blood test? I know the stool test from enterolab doesn't require you to break your diet.

[tex]

For someone already on a GF diet, they recommend starting with a gene test, because that will automatically eliminate about 65% of candidates, (by their criteria -that is, they do not recognize non-celiac gluten-sensitivity, NCGS). That's the biggest mistake, because first off, this is incorrect, because it is not necessary to have either a DQ2 or a DQ8 gene, in order to be gluten-sensitive, and even if you should arbitrarily agree that there is no such thing as NCGS, there are still undiscovered genes that predispose to celiac disease - DQ2 and DQ8 genes do not comprise 100 % of the possibilities, as they claim, (they use a round-off estimate). IOW, a small percentage of celiacs do not have either a DQ2 or a DQ8 gene. Statistically, it's a small error, but if you happen to be one of the people that it applies to, then it's a huge error, as far as you're concerned, personally.

If the gene test is positive, then they recommend the same old blood tests they've always used, (with the addition of a deamidated gliadin test, but that test is no more sensitive than any of the other tests, so it will gain nothing significant). Unless the GF diet has been used for only a few weeks, than those tests are all likely to be negative, resulting in a need for the patient to do a gluten challenge. That's basically the same routine that has always been used, (with the exception of the deamidated gliadin test). I don't see any notable change in their methods - nothing that will significantly improve the diagnostic procedure. It's smoke and mirrors - much ado about nothing.

Tex

[MaggieRedwings]

I 100% agree with Tex - smoke & mirrors. I also have, over time, lost all faith in the Mayo Clinic. A much touted institution that does not seem to grow with the times.

Maggie

[harma]

For one or the other reason, the mainstream gluten free world is a closed world. Closed in their mind (gluten intolerance = celiac and/or HD and other gluten related diseases do not exist) and closed for others who have another opinion on it (we the real ones against them the pseudo gluten free world). A lot of money is invested at the moment in celiac research. What more genes are involved in the disease, medication to treat the disease (hello here we are again, money to be invested and earned by the pharmaceutical industry of course) and research into the cultivation of gluten free crops. Not one penny is spend (as far as I know) on a further influence on gluten on the human body, besides skin (HD) and smaller intestine (celiac).

While the appearance of gluten intolerance is a wide spread collection of symptoms though whole human body. This [/i]is recognized by mainstream medicine, but due to that, that maybe celiac and HD are only two diseases of a much broader spectrum, is still a bridge (no an ocean) to far.

the current tests don't detect the non-celiac gluten intolerances, so in mainstream medicine it means that, it is not there. Sure of course, or maybe look at in in another way, could it be possible other tests are needed (for example dr Finn's stool test).

[mbeezie]

Tex,

I eagerly opened my e-mail and saw the White Paper and kept waiting for the punch line, but it never appeared. Sigh. I sent it to you in the same fashion it was sent to me, and you had the same reaction. With big guns like Mayo spreading info like this it's no wonder Dr. Fine can't get recognized.

With that said, however, there is a gluten free revolution going on in this country despite what Mayo says. It appears that doctors are the ones with the narrow views. I am running into more and more people who are either on a GF diet or know someone who is. The medical field is simply not keeping up. Just look at how many GF products are appearing on store shelves and how many restaurants are now designating items GF. This trend is actally detrimental to diagnosing true cases of celiac (people going GF before tests can be done). If the authors of the White Paper were looking at the reality of what is happening, they would have addressed this issue. What would be newsworhty would be a non-invasive test method that would capture gluten sensitivity before full blown disease is evident.

Mary Beth

[ant]

Agree!

GF awareness is reaching a tipping point....

What is (possibly) a wee bit annoying is that the "fashion" and the "serious" stuff, like MC, is all mixed up. The "trendy" label could be used by ivory tower bigots to belittle those not formally Dx Celiac who are nevertheless seriously effected by Gluten...... But hey, as they say, "let the trend be your friend".

Best, Ant

[tex]

With big guns like Mayo spreading info like this it's no wonder Dr. Fine can't get recognized.

Well that explains it. I was trying to figure out why they would continue to publish "White Paper Updates", that weren't really updates, every couple of years, (their last "update" was in 2008). Clearly, it's just propaganda, aimed at trying to defeat the valiant efforts of a few radical doctors out there who are actually trying to bring some sanity to the treatment of celiac disease. It's a preemptive strike, designed to reinforce their stonewalling efforts to maintain the status quo.

As dedicated as they appear to be, to promoting such a medically-unsound position, imagine what they could accomplish, if they had their patient's best interests at heart.

Tex

[tex]

With big guns like Mayo spreading info like this it's no wonder Dr. Fine can't get recognized.

Well that explains it. I was trying to figure out why they would continue to publish "White Paper Updates", that weren't really updates, every couple of years, (their last "update" was in 2008). Clearly, it's just propaganda, aimed at trying to defeat the valiant efforts of a few radical doctors out there who are actually trying to bring some sanity to the treatment of celiac disease. It's a preemptive strike, designed to reinforce their stonewalling efforts to maintain the status quo.

As dedicated as they appear to be, to promoting such a medically-unsound position, imagine what they could accomplish, if they had their patient's best interests at heart.

Tex

[ant]

Dear Tex and all

Do you remember this string.....

http://www.perskyfarms.com/phpBB2/viewt ... ayo+clinic

I played the cynic. Oh dear, I may be right....

Best, Ant

[Stanz]

Tex,

magine what they could accomplish, if they had their patient's best interests at heart.

instead of giving the drug companies they depend on for funding another 10 years of profiting on selling their meds while people suffer.

[tex]

Ant,

Yep, I remember. I reckon the Mayo leopard will never change it's spots.

Tex