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Amazing Lectures At The Gluten Summit


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#46 CR5442

 
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Posted 15 November 2013 - 08:35 AM

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.


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#47 IrishHeart

 
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Posted 15 November 2013 - 09:21 AM

"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:

 

http://ajcn.nutritio...t/69/3/354.full

 

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.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#48 Gemini

 
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Posted 15 November 2013 - 11:20 AM

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.


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#49 GF Lover

 
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Posted 15 November 2013 - 11:43 AM

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

 

Colleen


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#50 jebby

 
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Posted 15 November 2013 - 08:49 PM

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[/size]

 

"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.[/quote]
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#51 Adalaide

 
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Posted 15 November 2013 - 09:28 PM

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

 

Colleen

 

"Find the healthiest person you can stand" and so many other little things. The guy isn't just amazingly brilliant. He's hilarious. :lol:


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#52 Rucko

 
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Posted 16 November 2013 - 05:44 AM

Getting back to the Summit, it's not a 'celiac' summit after all.  And we're all big people here so I don't think we need to worry about the fact that some of them are selling something.  At least the lectures are not coming across as crass advertising.

 

Personally I found it quite fascinating that doctors such as David Perlmutter are finding they can assist people by having them eliminate gluten from their diets.  Maybe it's not a cure for Alzheimer's but at least we know it's not an impossible challenge to eat gluten free.  Another doctor, Natasha Campbell-McBride, works with autistic children and other people with compromised digestion.  Her book on the GAPS diet has really helped me, probably as much as going gluten free, so if found her talk really interesting.   

 

On another note, it's unfortunate that some of the recordings have such poor quality that it was difficult it make out what they were saying. 


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#53 dilettantesteph

 
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Posted 16 November 2013 - 08:48 AM

I feel for all the medical practitioners who will be dealing with people bringing them information that they got from this summit.  There is far too much talk about studies without actually giving the references.  Some of these, I believe, are ones that I have heard debunked elsewhere.  That's a problem with medical information and the internet in general and here is a huge dose of it.

 

In fairness, Marsh did say English beer and not all beer.  I don't know if there are any studies about English beer being low gluten, but I doubt it.   After all, it is in England where wheat starch is considered O.K.  Does anyone know how old he is?  He may not have kept up.  It wasn't that long ago that 200 ppm was considered safe.


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#54 jebby

 
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Posted 16 November 2013 - 12:23 PM

I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough to see how many so many babies are being birn with milk protein allergies/intolerances. This Summit is providing information about a medical treatment for which there is no long term follow up. I searched the entire pubmed database and there is not one published study on the usage of bovine colostrum in people with celiac disease or NCGS. I did find a study though where colostrum caused an increased risk of leaky gut in distance runners.
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#55 IrishHeart

 
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Posted 16 November 2013 - 04:02 PM

I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough to see how many so many babies are being birn with milk protein allergies/intolerances. This Summit is providing information about a medical treatment for which there is no long term follow up. I searched the entire pubmed database and there is not one published study on the usage of bovine colostrum in people with celiac disease or NCGS. I did find a study though where colostrum caused an increased risk of leaky gut in distance runners.

 

 

I also searched for information about bovine  colostrum in 2010 because this was recommended to me by "an alternative practitioner". I balked at it.

 

I know there is no evidence of its ability to heal a leaky gut. More anecdotal evidence and "may" and "could" offered in these interviews than solid info. I found some of the experts to be extremely interesting and helpful but some others....just plain ridiculous. 

 

I stopped listening to the recordings. Too much alarmist information, Too much speculation. Too much fear-mongering. And too much of "dr tom" stroking his own ego and justifying his alarmist rhetoric (yup. I said it) This is a forum for ideas and opinions after all.

 

The whole "this young man MAY HAVE died from dairy cross-reactivity to gluten" is the most absurd, unfounded statement that has me still scratching a hole through my head. How can  he say such a thing?

 

The problem is, most people listening have no medical background (as you do,  Jess) nor do they do any research.

 

I saw the "testimonial" from a mental health practitioner who claims she uses IgG testing to help children with anger/anxiety issues.

Really? for what?!!

 

 Here's the dilemma--those tests are not valid. There are no tests for "gluten sensitivity" or "food intolerances".  

Yes, those  "functional med" practitioners will tell you they are, but if you take the time to look at the science --you will find it's pure bunk.

 

http://www.scienceba...he-science-say/

 

Do I think some children with these issues would benefit from a gluten free diet? yes!

We all know gluten causes these behavioral problems-- if a child has gluten intolerance.

But do I think it is okay for these "practitioners " to have their clients spend hundreds of dollars on these bogus tests? Absolutely not.

 

I fear that more people will assume the worst from some of these presentations.

But you know what? People will believe what they want..... sigh.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#56 dilettantesteph

 
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Posted 17 November 2013 - 10:21 AM

That bovine colostrum guy did a really good job of sounding scientific.  Thanks for researching that Jebby.  I wonder how much they charge for that stuff?

 

Today someone said that sprouts contain oxygen and when you eat them you instantly put oxygen into your blood so that you can supply your brain with oxygen.

 

O'Bryan just buys all that crap.  It's amazing.


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#57 Tbolt47

 
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Posted 06 December 2013 - 09:43 PM

Most folks on this board will offer testimonials about vitamins and supplements they take how they have changed their lives and recommend other do the same. However, there is no actual science to prove ingesting vitamins( as a dietary supplement) has any benefits.

 

They truly are the ultimate placebo. This is usually where the antidotal evidence is inserted, I feel so much better and have so much more energy, etc. Most folks figure it can't hurt to take a multi vitamin, maybe not, but it certainly cannot be proven they help.

 

Is there science evincing digestive enzymes or probiotics help celiac ? I can find actual scientific study's linking probiotics to  reduced heart disease, nothing regarding celiac. It is interesting reading people pontificating, about other people pontificating.

Our children learn the art of salesmanship and to negotiate with their parents, from a very young age. That in itself should prepare us to be judicious with what others will attempt to "peddle " . The gene pool has been thinned out by ignorance since man/woman has walked the planet, 5 minutes on the internet will demonstrate this.

 

Yet as Schopenhauer stated,

"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident."


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#58 IrishHeart

 
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Posted 07 December 2013 - 05:45 AM

Most folks on this board will offer testimonials about vitamins and supplements they take how they have changed their lives and recommend other do the same. However, there is no actual science to prove ingesting vitamins( as a dietary supplement) has any benefits.
 
They truly are the ultimate placebo. This is usually where the antidotal evidence is inserted, I feel so much better and have so much more energy, etc. Most folks figure it can't hurt to take a multi vitamin, maybe not, but it certainly cannot be proven they help.
 
Is there science evincing digestive enzymes or probiotics help celiac ? I can find actual scientific study's linking probiotics to  reduced heart disease, nothing regarding celiac. It is interesting reading people pontificating, about other people pontificating.
Our children learn the art of salesmanship and to negotiate with their parents, from a very young age. That in itself should prepare us to be judicious with what others will attempt to "peddle " . The gene pool has been thinned out by ignorance since man/woman has walked the planet, 5 minutes on the internet will demonstrate this.
 
Yet as Schopenhauer stated,
"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident."

Pontificating...?!  You are implying that those of us expressing an opinion here are "pontificating"? Gee whiz. ^_^
 
The administrator of this forum thinks we are all expressing our valued opinions, worthy of discussion and he heartily encourages us to do it.
Often. (Honest, you can ask Scott if you do not believe me!)  :lol: 
 
Okay, I was with you up until....... they "have no benefits". There is science that proves appropriate supplementation is beneficial.
Pub med is loaded with journal articles. 
 
Had I NOT supplemented with B-12, Folate, Vit D and calcium, all under medical supervision, I would still have major deficiencies and downward- spiraling bone density.
There are many reasons why taking a B-complex is beneficial to celiacs who are recently diagnosed.
 
If you had listened to Dr. Fasano's interview, you would have heard why a health microbiome with good bacteria is very beneficial for celiacs--and everyone else's--gut and overall body health.
 
What happens when people supplement because of a medical necessity is hardly a placebo effect. It reverses deficiencies.
(Offered IMHO, and totally not pontificating here).. 
 
Your quote only applies to those things that are ultimately PROVEN as truths.
 
Are people always wise enough to discern the truth from the as- yet, unproven? Nope.. 
.
Discerning the truth is difficult when one is frightened, sick, bullied, cajoled or unenlightened. People want to believe "intelligent-sounding"
people with a label of "doctor" (no matter how that word it is used).
 
I'm not stupid, but I was persuaded by some pretty savvy people who called themselves "doctors" when I was very ill to pay for tests and supplements that had no validity. One was a prestigious "functional med" doctor with a fancy clinic. He had credentials out the wazoo.
.....yet, he was very wrong about my diagnosis and kept me ill for 10 months longer than I had to be.. Another was a Rheumatolgist who
was outraged when I questioned why he wanted me to take powerful anti-cancer drugs for my joint pain. (turns out, he was VERY wrong about
his "diagnosis" of AS.) Naturopaths suggested various "blood type diets", colon cleansing,heavy metals chelation therapy etc --all of which I balked at--
but when they explained to me the "many health benefits" in such a convincing tone, well, they sure made that snake oil sound like "magic"!!
 
Had it not been for some very good information about celiac --on this forum and in Pub med articles--I would probably be dead by now.
 
Discussion about the many theories that circulate on the internet regarding celiac may be very helpful to those who are still sick and searching for the truth about what ails them. Just because some of us are

more likely to research everything to death before believing it's "good for us" doesn't mean others will.
 
Okay, my pontificating is finished now. :)


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#59 dilettantesteph

 
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Posted 07 December 2013 - 06:33 AM

There is a study, though small, that shows that probiotics help celiac disease: http://www.ncbi.nlm....pubmed/23314670, and a larger study on IBS: http://www.ncbi.nlm....pubmed/16863564

 

I don't try things unless I have some good evidence of efficacy.  I understand where you are coming from, Tbolt47.  However, there is a difference between thinking analytically and being dismissive.


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#60 Tbolt47

 
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Posted 07 December 2013 - 09:39 AM

Pontificating...?!  You are implying that those of us expressing an opinion here are "pontificating"? Gee whiz. ^_^
 
The administrator of this forum thinks we are all expressing our valued opinions, worthy of discussion and he heartily encourages us to do it.
Often. (Honest, you can ask Scott if you do not believe me!)  :lol: 
 
Okay, I was with you up until....... they "have no benefits". There is science that proves appropriate supplementation is beneficial.
Pub med is loaded with journal articles. 
 
Had I NOT supplemented with B-12, Folate, Vit D and calcium, all under medical supervision, I would still have major deficiencies and downward- spiraling bone density.
There are many reasons why taking a B-complex is beneficial to celiacs who are recently diagnosed.
 
If you had listened to Dr. Fasano's interview, you would have heard why a health microbiome with good bacteria is very beneficial for celiacs--and everyone else's--gut and overall body health.
 
What happens when people supplement because of a medical necessity is hardly a placebo effect. It reverses deficiencies.
(Offered IMHO, and totally not pontificating here).. 
 
Your quote only applies to those things that are ultimately PROVEN as truths.
 
Are people always wise enough to discern the truth from the as- yet, unproven? Nope.. 
.
Discerning the truth is difficult when one is frightened, sick, bullied, cajoled or unenlightened. People want to believe "intelligent-sounding"
people with a label of "doctor" (no matter how that word it is used).
 
I'm not stupid, but I was persuaded by some pretty savvy people who called themselves "doctors" when I was very ill to pay for tests and supplements that had no validity. One was a prestigious "functional med" doctor with a fancy clinic. He had credentials out the wazoo.
.....yet, he was very wrong about my diagnosis and kept me ill for 10 months longer than I had to be.. Another was a Rheumatolgist who
was outraged when I questioned why he wanted me to take powerful anti-cancer drugs for my joint pain. (turns out, he was VERY wrong about
his "diagnosis" of AS.) Naturopaths suggested various "blood type diets", colon cleansing,heavy metals chelation therapy etc --all of which I balked at--
but when they explained to me the "many health benefits" in such a convincing tone, well, they sure made that snake oil sound like "magic"!!
 
Had it not been for some very good information about celiac --on this forum and in Pub med articles--I would probably be dead by now.
 
Discussion about the many theories that circulate on the internet regarding celiac may be very helpful to those who are still sick and searching for the truth about what ails them. Just because some of us are

more likely to research everything to death before believing it's "good for us" doesn't mean others will.
 
Okay, my pontificating is finished now. :)

An opinion,  by definition need not be constructed  as a passive aggressive persuasive argument, nor does it need to be based in fact.Unless, I am mistaken forum members are not offering" legal opinions" nor" medical opinions" they typically offer their unique life experience and occasionally a hyperlink to support their action or inaction.

 

To your point, correcting a known vitamin/mineral deficiency

by augmenting your diet falls under the heading of " self evident truths ". As correcting any deficiency would. However, if your small intestines cannot assimilate/absorb the necessary vitamins/minerals from the food you eat, why would taking a " vitamin supplement " make a difference, unless of course a person is in fact able to absorb/assimilate. Fact is as you heal ,your small intestines function as designed and more efficiently.

 

Nearly every year the medical/scientific community comes up with some new cataclysmic  discovery, currently vitamin" D " deficiency causes every malady under the sun ( pun intended) . I do not know an individual who has had their year check up that isn't prescribed a  mega dose of vitamin " D ", for a duration of time. Yet milk, bread etc. has been supplemented with vitamin " D "  for decades. In the next couple of years it will be something else. Which segways into point about the medical" business". The medical profession is not a charitable concern, it is a business, in fact you would be hard pressed to actually find a true charity,or  non profit organization, that isn't classified as such for tax benefits. The unnecessary amount of testing done is motivated by the " not for profit " hospitals and an over litigious society we live in, assuming you reside in the US. Changing this will require tort reform legislation, not likely since a large % of  politicians practice law. This would be tantamount to a pay cut.

Business is the engine that drives society, if someone operates under any other understanding, you will most likely have a unsatisfactory experience. No matter what your undertaking is.

 

I think I have matched your pontification, balls in your court.


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"What I can give, is never as much as I get from the giving "  -Author Unknown

 

 

 





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