Notes from Dr. Peter Green's talk at GIG conference 2009

[cruelshoes]

This was one of the hilights of the conference for me. The banquet on the last night of the conference cost $35, and I knew I could not come up with it. So I volunteered to work the door taking tickets in the hopes of getting to hear some of Dr. Green's talk. Not only did I get to hear him speak, I got to eat an amazing dinner! Just another plug for volunteering at a conference if you are strapped financially.

I probably should have done my homework better on Dr, Green, though. I didn't know what he looked like, so I wouldn't let him through the door because he didn't have a ticket. He gave me this wierd look and said "I'm the speakah" in his Australian accent. I looked at his nametag, realized it was him, and fell all over myself apologizing. Duh!

The first part of the talk was general points about CD, how it works in the body, how wheat has become more preavalant in the last 500K years or so. I didn't take many notes there, because we already know most of that. Below are the notes I did take.

Highest prevalance of CD is in North Affrican refugee countries (5%)

Percentage chance of having CD in the US is the same in adults and children (1:133). Indicates that when people are diagnosed as adults, they have likely had the disease going on for a long time.

Best not to rely on a single part of the celiac panel to indicate a need for biopsy. Ideal combination of positive tests that indicate CD are TtG and DGP.

Italian scientists have mapped the human face and learned that people with Celiac have a proportionally larger forehead than general population. This is because the portion of the face that is under the eyes develops later than the forehead, and can be stunted from malabsorption

Possible reasons for false negative biopsy
-If the biopsy is negative, be sure to ask if the pathologist evaluating the slides is a GI pathologist. Most are not.
-Inadequate number of samples is a problem (should be greater than 6)
-disease is patchy
-under or over interpretation of atrophy on samples

Why biopsy is gold standard
-Need to have a baseline to follow progress and evaluate care plan
-May have temporary gluten intolerance (even in the presence of TtG)
-Especially important in children as this is a life-long diet

Dr. Green usually recommends blood test be done at intervals in children before doing the biopsy, even in presence of TtG, as gluten intolerance can be temporary and not CD.

Genetic testing - nearly 100% of celiacs have some combination of DQ2 and DQ8. Miniscule percentage do not have the genes.

Role of genetic testing
-Assessing relatives to see if they need fruther blood testing
-Questioning diagnosis
-If already on GF diet

Gluten sensitivity - symptoms go away on a GF diet, but negative test results. It is real, but doctors have a hard time dealing with it because there is no test to quantify it.

DH - 20% of people with DH have normal biopsy. If you define celiac strictly by villi damage, these people with DH do not have celiac. But they do. (he went back and forth on this several times), People with DH produce TtG3.

People with Neurological symptoms produce TtG6.

What can you do about celiac disease?
-Speak up about it
-Support celebrities with celiac even when they get the facts wrong. Stop rubbishing Elizabeth Hasselbeck.
-Invite your teachers and school board staff for dinner so they know what the GF diet is like
-Got to meetings, dinners, fundraising events
-Participate in research studies
-Raise money for celiac disease research

We as celiacs do a poor job of raising money to look or cures for the disease. We spend a lot of time having support groups telling each other what to eat, but we need to do more to raise funds for research. If we had diabetes, we would raise funds.

Failure to diagnose is the current standard of care. The only way to change this is through research.

TtG can be added to food to make it look better. (he gave an example on the web of a site that shows a bad fish looking better after TtG is added to it. I wrote down "Activa", but that must be wrong, becuse that website does not match. Does anyone know anything about this?)

People on a GF diet have a 23 fold increased risk of thyroid cancer

Then he asked some questions:
Who here has celiac - lots of people raise their hands
Who is looking for a pill - significantly fewer raised hands
Who would want their kids on a pill - only a few raised hands

People with celiac need specific followup care
GF diet is usually inadequate in - B vitamins, calcium, iron

There are not more celiac centers in the US because there is no money in it for the pharmaceutical companies. Go to our local teaching hospital and push for a celiac center.

Visit their website
http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[Deb]

Dr Green is a good speaker, isn't he? I have seen him many times, of course, he is in NYC, and I live on Long Island, so he does speak at our support group meetings as a fund raiser for Columbia. At one of our vendor fairs, I was with him for his book signings, even had a pic taken with him. He's not what you would expect, and I can understand why you didn't think he was Dr. Green. He does have a nice accent. Our last vendor fair, I was so busy, he came and went, and I never did get to say hi.

His opinion has changed towards those of us with gluten intolerance, and it's a good change.

[Home-Based-Mom]

Thanks for the post!

I found this to be a bit scary.

Quote:

People on a GF diet have a 23 fold increased risk of thyroid cancer.

Did he say why this is? Is there something we should or should not eat here?
_________________
Sandi ~ learning to live in a world obsessed and infested with wheat.
"If it wasn't food 100 years ago, it isn't food now." Mike Huckabee
Support Operation Christmas Child

[lbd]

The TTG in food question is a good one. I brought this up on the other forum a while back but no one responded much. Here's what I wrote and the article referenced is this one:

http://en.wikipedia.org/wiki/Transglutamination

"My question would be: Is the industrial transglutaminase (see the wiki article mentioned above) used to bind foods in things like rice pasta, cause the body to produce the same antibodies that tissue transglutaminase causes? If so, would this affect tests for ttg? Would the results for ttg be abnormally affected by the very foods that we are eating to replace gluten foods, such as rice pastas and the like? And what is the effect on our bodies if we are making antibodies towards this stuff? This sends a big red flag up with me. I know enough about this to think that this stuff might not be a good thing to have added to our foods. I wish I could find out more about the industrial transglutaminase and just how close it is to tissue transglutaminase.

I bet no one has bothered to look into this. The food industry does all sorts of things to our food (like using mercury in the process of making HFCS) that we don't even dream of, without thinking or caring about the consequences to our systems.

I am beginning to wonder if I should ever eat anything processed by a large industrial food business again."


Makes you wonder if this stuff has any effect on us since they are using an enzyme that the body reacts to in celiac disease or gluten intolerance. It is one of the things that Dr. Fine tests for as well. Are we using replacement foods that incorporate this ingredient?

Laurie

[lbd]

The TTG in food question is a good one. I brought this up on the other forum a while back but no one responded much. Here's what I wrote and the article referenced is this one:

http://en.wikipedia.org/wiki/Transglutamination

"My question would be: Is the industrial transglutaminase (see the wiki article mentioned above) used to bind foods in things like rice pasta, cause the body to produce the same antibodies that tissue transglutaminase causes? If so, would this affect tests for ttg? Would the results for ttg be abnormally affected by the very foods that we are eating to replace gluten foods, such as rice pastas and the like? And what is the effect on our bodies if we are making antibodies towards this stuff? This sends a big red flag up with me. I know enough about this to think that this stuff might not be a good thing to have added to our foods. I wish I could find out more about the industrial transglutaminase and just how close it is to tissue transglutaminase.

I bet no one has bothered to look into this. The food industry does all sorts of things to our food (like using mercury in the process of making HFCS) that we don't even dream of, without thinking or caring about the consequences to our systems.

I am beginning to wonder if I should ever eat anything processed by a large industrial food business again."


Makes you wonder if this stuff has any effect on us since they are using an enzyme that the body reacts to in celiac disease or gluten intolerance. It is one of the things that Dr. Fine tests for as well. Are we using replacement foods that incorporate this ingredient?

Laurie

[Deb]

I often wonder to Laurie. I do not eat hardly any processed foods anymore.

[cruelshoes]

[smalltownslackermom]

"People on a GF diet have a 23 fold increased risk of thyroid cancer "


um, ok... so now what? Tofu, tempeh, and maybe miso?
http://www.ncbi.nlm.nih.gov/pubmed/11815400?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
"The consumption of traditional and nontraditional soy-based foods and alfalfa sprouts were associated with reduced risk of thyroid cancer. Consumption of "western" foods with added soy flour or soy protein did not affect risk."

I don't think I can get tempeh where I live but I can find tofu and miso. though the study doesn't mention miso...

Does anyone know if the Ttg blood test that is commonly done covers the different Ttgs - TtG3 and TtG6? is the one test all encompassing? This may be pertinent in my family members is why I ask.
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative bloodwork 5/09, pos. biopsy 11/09
sister - gf for ~3 years and is a new person
niece - positive ttg 2/10, foregoing biopsy

[Deb]

I'm betting he will, if he gave his addy, and said to email him, he should. Is it his though, or is the celiac center? My neuro is one of the busiest doctors I know, and he answers emails, sometimes you even catch him online, and you can carry on a conversation with him. I think he will.
_________________
You can't discover new oceans unless you have the courage to lose sight of the shore!

[neesee]

_________________
Denise

Biopsy diagnosed January 1988

[aklap]