Amazing Lectures At The Gluten Summit

[IrishHeart]

It is billed as: "29 of the world’s experts" 

that's an exaggeration. I counted a handful of world-renowned experts on that panel.

"and opinion leaders on the topics of gluten-related disorders"

"opinion leaders". I have opinions. I exhibit leadership skills. I know a great deal about gluten-related disorders. Wish I had been invited.

 

The problem with some of the opinions is that none of the celiac centers will agree with this 'cross-reactivity" theory, yet these chiropractors

and assorted functional med/naturopaths have their clients spend hundreds of dollars on this testing. 

It comes down to $$$$$$$$$$$.  Allergy testing and "IgG food intolerance testing" has never been approved or vetted as being reliable for diagnosing "gluten sensitivity".

If the celiac center at U of C says there is no evidence that cross-reactivity to various foods is a concern for celiacs, how can

these people insist that it is? I wish I could have asked Dr. Fasano his opinion on it. .

 

Still makes my head spin that some naive gluten-intolerant person will read that "beer is okay to drink"

and then say "but I heard Dr. Marsh himself say it!" and then post it like mad on here.

 

And thus, another gluten myth is born.

[IrishHeart]

Of the speakers, who do you consider credible?

 

I believe the following are/we worthwhile:

 

Alessio Fasano

Marios Hadjivassiliou

Umberto Volta

 

Please let me know of any others!

 

Those 3 are certainly leading celiac researchers. IMHO

[1desperateladysaved]

Yesterday I heard:

 

There are saliva tests for antibodies which can be done at 3 months.  (Want to check what others experience with this is)

My rotational diet may be dangerous.

50% of people with celiac test negative when only one kind of antibody is checked.

One can react to minute quantities of things in the air.

 

I don't mean to debate any of these points here am just recounted things that I remember.

 

I think it is something to consider that someone with "Qualifications." considers all 27 speakers experts.  What they say this year may not be totally correct, but it moves in a direction toward more research.  No one expert has all of the answers; that is why one would listen to various ones.  One can likely also get nuggets to think about from each speaker. 

 

What is said by the experts and the public reaction to it will help to determine what experts will be heard from again next year or in the future.  In my opinion One can't throw out everything someone says because they don't agree with part of it.  If we did that, we couldn't listen to anyone.  Needless to see our MD's would be on the list of ones that make mistakes.  That's science, man doesn't know everything, so we try to learn.

 

I think the experts we can learn the most from have suffered for years with symptoms of celiac, realized it, and have turned their health around.  They may not have all approached it the same ways, but they are active and well.  We may not treat our celiac with all of the same ideas and methods, but each gets it done.  These experts should also realize that their tried and true method may not be a "One size fits all".

 

D

[kareng]

Melinda Dennis is on today.  She is legit! 

[IrishHeart]

Melinda Dennis is on today.  She is legit! 

 

love love love this woman. It's her book Real Life with Celiac Disease that I suggest to everyone on here (and everywhere).

[kareng]

And it will probably be one of the more useful for living your life talks.

[IrishHeart]

And it will probably be one of the more useful for living your life talks.

 

yes..practical,solid, real life info from a registered dietician and fellow celiac 

[dilettantesteph]

I agree that it is an interesting mix of solidly scientific experts and probable quacks.  It can be hard to tell the difference.  This is what happens these days when we get "medical" information direct to consumer rather than disseminated through our doctors.  It comes to us much more quickly, but we have to figure out what is legitimate.  

 

My thinking about Marsh and beer is that perhaps he has mainly dealt with celiacs sensitive to higher levels of gluten.  I have read here about celiacs who drink beer without symptoms.

 

These interviews are giving me plenty to think about.

[Gemini]

My thinking about Marsh and beer is that perhaps he has mainly dealt with celiacs sensitive to higher levels of gluten.  I have read here about celiacs who drink beer without symptoms.

 

 

You cannot say that someone who can drink a beer and have no symptoms are people who are sensitive to higher levels of gluten.  There are many celiacs who are completely asymptomatic and do not feel the result of gluten ingestion yet were biopsy diagnosed with no working villi left.  I have met them at celiac related gatherings.  These people have no idea when they have ingested gluten so this has nothing to do with the ever popular topic of whose more sensitive than who.  It has to do with beer contains gluten on a big scale and no celiac can drink regular beer....ever.  They will damage their gut, whether they feel it or not. Dr. Marsh shot down any credibility when he made that loopy statement.

[IrishHeart]

I agree that it is an interesting mix of solidly scientific experts and probable quacks.  It can be hard to tell the difference.  This is what happens these days when we get "medical" information direct to consumer rather than disseminated through our doctors.  It comes to us much more quickly, but we have to figure out what is legitimate.  

 

 

 

Yes, but.....sadly, not everyone is able to discern the difference between experts and quackery.

 

Some of the comments I am reading after the presentations tells me there is more "pseuodo-doctoring" going on

by people who are not qualified.  One mentions diagnosing her patients with muscle testing, another says colonic irrigation, others say hair analysis and another claims she is diagnosing gluten intolerance via IgG testing.

 

If people would read the available information about any of these methods, they would learn that none of those are validated.

 

Lots of $$$ spent.....makes these practitioners rich.

[notme]

and, in damaging your gut, you don't absorb nutrients your body needs to function properly, thus doing damage to your whole body.  i do not agree with gut problems being restricted to the gut.  and 'asymptomatic' people <do not have 'gut' symptoms) but have symptoms that are seemingly unrelated - joint pain, migraines, fatigue, etc........ 

 

and aren't we all sensitive?  really. 

[CR5442]

I think that perhaps we need to listen carefully and find the points that are of interest to us, as a member mentioned on this thread earlier.  One point I'd like to make is that medical researchers within the European Union are extremely strictly regulated and cannot make quack type claims.  These are the guys that I am listening to particularly as I know their research has solid roots.  Please don't forget that people, when in interview, will find it difficult to quote exactly from their research.  It is good also to listen to people who have experience of being Celiac or Gluten Sensitive, but that does not necessarily make them professionally expert, unless they of course have a solid medical background in this field.  We are very lucky to have free access to this summit and it would be nice that we could be at least a little positive about the 'good bits' these speakers are bringing to us.  I for one will be contacting Mario and Mr Fasano for further information on research they may be doing as here in the UK the NHS is cutting back radically on GP testing and will not look at anything outside of IgE or IgA with regard to gluten sensitivity.  I have really serious ataxia when glutened accidentally and am so grateful to have the chance to reference listening to these seminars as a key in to getting an audience with Mario in particular.

[IrishHeart]

of course I am finding some parts of these presentations valuable. We're just expressing our opinions.

 

I found this man's research on the neurological effects of gluten most valuable when I was researching my own symptoms and I will be listening to him later today.. 

 

Dr. Marios Hadjivassiliou

[CR5442]

I agree IrishHeart, he is the guy I am most interested in.  My last glutening saw me unable to walk properly, see properly, unable to move for 12 hours whilst enduring a very high fever, I think he may be interested, even though I don't have a positive IgE test and hence have not been allowed an endoscopy.  It was two years since I ate gluten and the reaction was severe and very very clear and a lot of it was neuropathic in nature.  What are your symptoms?

[CR5442]

Can I ask IrishHeart if you are are from Ireland?  Who did you go to for genetic testing?  They again won't do this kind of testing on the NHS.

[IrishHeart]

I agree IrishHeart, he is the guy I am most interested in.  My last glutening saw me unable to walk properly, see properly, unable to move for 12 hours whilst enduring a very high fever, I think he may be interested, even though I don't have a positive IgE test and hence have not been allowed an endoscopy.  It was two years since I ate gluten and the reaction was severe and very very clear and a lot of it was neuropathic in nature.  What are your symptoms?

 

 

Can I ask IrishHeart if you are are from Ireland?  Who did you go to for genetic testing?  They again won't do this kind of testing on the NHS.

 

No, hon, I do not live in Ireland. I live in the States.My genetic test was done by blood work through my  gastroenterologist.

My neurological symptoms were varied: a bit of ataxia, burning neuropathy, parasthesia, disturbed vision, mental fog and

inability to concentrate and articulate. My brain was deeply affected by gluten before my diagnosis.

Scared the heck out of me.

 

IgE testing is not a diagnostic approach for celiac. That is for allergy testing.

You need a celiac panel.

[Gemini]

I think that perhaps we need to listen carefully and find the points that are of interest to us, as a member mentioned on this thread earlier.  One point I'd like to make is that medical researchers within the European Union are extremely strictly regulated and cannot make quack type claims.  These are the guys that I am listening to particularly as I know their research has solid roots.  Please don't forget that people, when in interview, will find it difficult to quote exactly from their research.  It is good also to listen to people who have experience of being Celiac or Gluten Sensitive, but that does not necessarily make them professionally expert, unless they of course have a solid medical background in this field.  We are very lucky to have free access to this summit and it would be nice that we could be at least a little positive about the 'good bits' these speakers are bringing to us.  I for one will be contacting Mario and Mr Fasano for further information on research they may be doing as here in the UK the NHS is cutting back radically on GP testing and will not look at anything outside of IgE or IgA with regard to gluten sensitivity.  I have really serious ataxia when glutened accidentally and am so grateful to have the chance to reference listening to these seminars as a key in to getting an audience with Mario in particular.

Caroline......there is no test for gluten sensitivity and that one will be a long time coming.  Sensitivity is very different from intolerance/allergy but that does not mean your symptoms are any less severe. It's not your fault that the medical field is behind in developing these types of tests to catch everyone's level of the problem.  But your recognition of the fact that you have these symptoms when you ingest gluten and you strive to be gluten free as possible speaks volumes. It sometimes drives be crazy to see people suffer yet they will not be proactive unless they have a positive test and a doctors blessing.  This is when they start to believe kooky people all in the name of validation.  You do not have to convince us....we believe you!

 

I do not know about England but here in the States genetic testing is done by a number of labs and you do not need a doctors order to do one. I did mine without the doctor because I did not want my insurance company to have any gene testing results.  It cost me about $170.00 and I found out I had a double Celiac gene.  I know that is a lot of money for some but I think it is money well spent.  You could probably search on-line and find a lab.

[CR5442]

Hey guys, thanks so much for your responses.  Could you tell me exactly the tests that you have had for celiac (bloods I mean rather than Endoscopy).  I'm going to book me and my daughter in to a private GP to see if we can't get some more solid results.  I was exposed about three months ago to gluten and am still having symptoms.... though slowly getting better.  Do you think the reaction would still turn up in bloods?  I was so sick I really don't want to go through that all again, without being under direct medical supervision.

[dilettantesteph]

You cannot say that someone who can drink a beer and have no symptoms are people who are sensitive to higher levels of gluten.

 

I did not say that.  I was suggesting possible reasons for Marsh saying that.  He could say it if he has done negative follow up biopsies of beer drinkers.  That would have been a great question for the interviewer.

 

That said, I agree with some of the other speakers that lack of gut damage doesn't necessarily mean lack of damage. 

[IrishHeart]

Hey guys, thanks so much for your responses.  Could you tell me exactly the tests that you have had for celiac (bloods I mean rather than Endoscopy).  I'm going to book me and my daughter in to a private GP to see if we can't get some more solid results.  I was exposed about three months ago to gluten and am still having symptoms.... though slowly getting better.  Do you think the reaction would still turn up in bloods?  I was so sick I really don't want to go through that all again, without being under direct medical supervision.

 

You really need to be actively consuming gluten for the antibodies to be present, but given your neurological symptoms, are you sure you want to go through the gluten challenge for testing?

[CR5442]

No, this is half of the problem IrishHeart.  I'm hoping there will be something left in my blood from the massive glutening in the summer as I still have GI symptoms.  I'm on my own with two small children and I can't even think about a challenge when I'm so disabled by a glutening.  There was one guy Vodjani I think who was talking about a rectal challenge...or perhaps it was one of the english docs as I remember them saying we would not be too bothered by this sort of thing over here... can anyone remember who it was?  If they could introduce a test like that I would do it tomorrow because I wouldn't get anywhere near as many of the symptoms - well, one would hope.

[IrishHeart]

"Rectal challenge with gliadin does produce a measurable change in the numbers of intraepithelial T lymphocytes in untreated celiac disease and could serve a surrogate test for diagnosing gluten sensitivity, but as currently performed does not help to diagnose celiac disease in patients already consuming gluten-free diets."

 

Found here:

 

Open Original Shared Link

 

Since you are already gluten free, it may not give you an accurate result.

 

Also of note, in this published medical article by Dr. Joseph Murray, a celiac specialist also states:

 

"Salivary antibodies to gliadin lack sensitivity and specificity for celiac disease. Blood tests that determine the presence of IgE to gliadin are also not useful in diagnosing celiac disease. Skin testing of intradermal gliadin is relatively insensitive and can be painful."

 

These types of tests are sometimes suggested by various practitioners--ones who are said to be gluten "experts".

 

I sincerely hope you can find the appropriate medical professional to help you.

In any event, you are certainly intolerant of gluten and need to follow a G F diet.

[Gemini]

I did not say that.  I was suggesting possible reasons for Marsh saying that.  He could say it if he has done negative follow up biopsies of beer drinkers.  That would have been a great question for the interviewer.

 

That said, I agree with some of the other speakers that lack of gut damage doesn't necessarily mean lack of damage. 

 

You mentioned, as you always do, that Marsh may have worked with people sensitive to higher levels of gluten.  That has nothing to do with the subject of beer being off limits to any diagnosed Celiac. It implies that those who do not feel symptoms could possibly have a beer because they aren't as sensitive as some, which is ridiculous. Marsh could not say that even if he did biopsies of beer drinkers that were negative. We all know that if you are gluten free for awhile, you heal. Having a regular beer, once in a while, will not cause enough damage for a doctor to find. If you cheat regularly, then maybe they can find damage but I doubt he is taking biopsies of those who cheat on a regular basis. 

 

The gluten free crowd are being scammed by some of these crazy people, masquerading as professionals. This is not new information, based on solid research but crazy talk that will confuse people.  Anything other than gluten free beer is off limits, for very obvious reasons and has nothing to do with sensitivity levels.

[GF Lover]

Just finished listening to Dr. Amen.  Is there any wonder why I love this man.  He literally saved my sanity.

 

Colleen

[jebby]

I have not watched any of the videos but am extremely concerned by a lot of the information that I am hearing is coming out of the summit in the social media world (that we can drink all types of beer, that should all be taking bovine colostrum, that cross reactive foods, like in the tragic case you just shared, make those of us sick with Celiac sick, that molds are to blame, that none of the celiac testing is accurate, etc). quote name="IrishHeart" post="895782" timestamp="1384403203"]

I found this to be the most erroneous and disturbing blatant piece of unscientific baloney I have heard thus far. Suggesting a young man committed suicide because he was depressed because he drank too much milk ?

How can this man get away with saying this?.

 

GLUTEN SUMMIT: DAY 3 REPORT

 

"Why didn't our Doctors consider this?” she asked.

 

Today, I received a thank you from a mother whose 21-year-old son with celiac disease recently committed suicide. “He loved his milk,” she said.  “1+ quarts per day.” Because of The Gluten Summit she now understands that cross-reactivity may have been a possible contributor to his ongoing depression. "Why didn't our Doctors consider this?” she asked me.

 

“Your Doctors didn’t know,” I replied.

 

We are only a few days into the summit and I am hearing this time and time again.

 

But, we are learning and we are changing the world.

Together.

 

 

that Gagged me.