International Celiac Symposium

[annelb]

Will anyone else be heading to NYC for this meeting? Ozz and I will be there :D

Be sure to take a look at the program - looks fantastic. I have heard that over 1100 people have registered and there are many who are looking for a room to share.

Of course we will be sending updates to you.

http://www.celiacdiseasecenter.columbia.edu/symposium/

Anne

[Zonulin]

Ooooo Peter Green and Joseph Murray. What wouldn't we give to see Dr. Hadjivassiliou and Dr. Fine there as well? ;)

Karen

[annelb]

Dr. Fine is not on the speakers list :( I doubt he asked or was asked to be a speaker. When he started Enterolab he made a decision to take the test directly to the public. I know that he is speaks to support groups. He recently did so in MO.
Anne

[annelb]

OZZ and I are in NYC and ready for the Symposium to start.

It is pouring rain and my flight was hours late. Glad I came in a day early. I have registered for the forum. Because of the rain we decided to eat at the hotel. When we asked our waiter about a GF meal he told us " they told us something about that today, but I wasn't listening." :eek: The manager of the restaurant told us all the GF food is coming in tomorrow :confused: You would think that the hotel would have been prepared for GF people to eat today. Tormorrow will be better as we start off with a GF breakfast :cool:

We said "hi" to Dr. Green and shook his hand. He did not seem to know us. :(

Good night,
Anne

[jcc]

I'm sure that you'll get a better response from Dr. H!! ;) :D

What fun! (except for the rain and uninformed waiter and the gf food not there yet...lol).

Can't wait to hear how things go!

Cara

[diamondheart]

You're in NYC, right? You can't find a GF restaurant there? When I was visiting last year, my nephew and I found this great GF asian restaurant. We just stumbled upon it. I wish I could remember the name of it. I'm sure there are plenty of other places to eat GF in the Big Apple!!

Claire

[annelb]

You're in NYC, right? You can't find a GF restaurant there? When I was visiting last year, my nephew and I found this great GF asian restaurant. We just stumbled upon it. I wish I could remember the name of it. I'm sure there are plenty of other places to eat GF in the Big Apple!!

Claire

There was a booklet with the GFRAP restaurants in NYC. It was raining and we were too tired to go out to eat. You are right, there are many restaurants here that we could have chosen. Tonight the food was wonderful. Roast beef, chicken, salmon, quinoa, wild rice, fresh veges - mmmmm. They treated us well.

Anne

[annelb]

There is no way I can relay all the information that was given in the meeting. Too much information and some of it was way over my head. Here is a bit of today's meeting.

Dr.Ciacci - from Italy. In Italy, like the UK, GF food is by prescription and covered under the National Health Care. GF is defined as no more than 10-20ppm. They also have a law called 104 that gives a celiac patient 2 paid days off a month. These can be used for doctor visits or buying food. There is also a law thet the community must take CD into account for any public event. As the number of people with CD rise, it may become more difficult for the NHC to pay for food. Because of the cost, they do not want people to be self diagnosed. She called these people celi-hooligans because they may generate confusion. (guess I have a new name :rolleyes: )

She said that there have been rumors that Italy had/has a program to screen all children for CD. She said this is not true.

Dr. James from NIH - Went over the NIH Consensus Conference of 2004. They now have a GF awareness campaign at www.celiac.nih.gov The primary target will be PCP's, Pediatricians, Ob/GYN's and Physician Assistants. They feel that it is best to start with them as these are the people who refer to the sepcialists. The secondary targets will be Nurse Practicioners, heamtologists, allergists and dermatologists. (I either missed where the GI docs fit in or they were not on this list. Maybe he thinks the GI docs already know about CD? Also missing from this list are neurologists.)

Cynthia Kupper, head of GIG said the best thing to do when reading a label that says "made in a facility with wheat...." is to ignore the label as it means nothing. There is still no definition for GF in the US. It is impossible to test to 0 gluten.

That is all you get for tonight. Tired and need to go to bed.
Anne

[jcc]

Thanks Anne.

Gee, I think perhaps I have inadvertantly spread that rumor about Italy screening all children... at least I have heard the rumor..and may have repeated it once or twice, but not a lot... whew!

Sorry that neurologists are not included, but they are specialists...so if the PCPs, PA's, etc., know that neurological symptoms can be presenting symptoms.. may that would help.

"Made in a facility that processes wheat"...she means these should be considered safe? Because I passed on some fine looking Fairy Food (sponge candy) the other day because it was produced in a factory with blah, blah, blah, blah....

Thanks for the report!

Cara

[darlindeb]

Anne and Ozz--can you see me waving at you--I am about 40 miles to your east on Long Island. I have met Dr. Green and shook his hand--he is a credit to celiacs. He attended one of our celiac support group meetings and he is very informative. His dietician, Anne Lee, spoke at one of our meetings also and she is wonderful too.

Hope you are enjoying New York. I love it here, of course where I am is much quieter than the city. Look on a map of Long Island and find Heckscher State Park on the south shore. I live just 3 blocks north of the state park. What a playground I have.

Enjoy!!!!!:D

[annelb]

My head is spinning. So much information to shove into my little brain. The talks are informative. I am also surprised how many physicians attend the general meeting.

Almost all of the doctors speaking talk about classic CD - positive TTG and EMA and positive biopsy. The only doctor who spoke of using the IgA AGA and IgG AGA was Dr. Pietzac. She is a pediatric GI doc and says these are useful in children up to the age of 7-8 years. She also said that they can be falsely positive in any condition with increased intestinal permeability such as cystic fibrosis, Down's, food allergy, chronic diarrhea...

Dr. Pietzac mentioned the best method to measure compliance was with the a
AGA antibodies. TTG will not measure small infractions.

TTG is replacing EMA as EMA is time consuming and expensive. TTG is less specific than EMA Also young children may not make TTG. False positives are found in T1DM, autoimmune hepatitis and possibly IBD.

She also said that the sensitivity and specificity of CD tests can vary depending on the population tested.

Stool antibody tests - the article from Germany was mentioned without mentioning Dr. Fines reply. http://www.bmj.com/cgi/content/full/332/7535/213 you can read the article and there is a link to the comment.

There were talks on endoscopy, capsule endoscopy and double balloon enteroscopy. It was felt that capsule endocopy was useful in those with +serology but questionable or negative bx or alarm symptoms. The capsule is used by only 15% of the GI docs. Double balloon is a method to look at the complete small intestine and take biopsies. It can be done top down or bottom up.

Dr. Malahias - dentist - gave a very good talk on referring patients for diagnosis of CD when he finds dental enamel defects or canker sores. He said that children with CD did not have more cavities than "normals" but adults with CD did. He mentioned that we need to ask about gluten in the polishing pastes and fluride treatment.

Other causes of dental enamel defects were nutrition, infection, trauma, fluride and medications.

That is just a smidgen of what I heard today.

Anne

[annelb]

Yes, I did meet Dr. H. I did shake his hand. I did talk with him breifly. Yes, he knows of Braintalk. :D No I still don't know how to pronounce his name. :(

He was the only physician who spoke about gluten sensitivity saying that only 1/3 of patients with neurological disease caused by gluten have enteropathy. I found it interesting that in his series of people with gluten related neuropathy the men outnumbered the women. He said that people with ataxia and PN, 57% will have positive AGA IgG antibodies compared to 12% of the "normal" population. Gluten ataxia accounts for 21% of all ataxia. Neuropathy from gluten is not because of vitamin deficiencies although vitamind deficiencies may be present. He also mentioned gluten enceopalopathy that is similar to migraine and gluten myopathy. On epilepsy he said the only known association to gluten is those in Italy with brain calcifications. A participant asked about autism and ADD. He said that he treats adults and has not looked into this. (I guess we can't ask him to be an expert on all neurological diseases)

Anne

[aklap]

Cynthia Kupper, head of GIG said the best thing to do when reading a label that says "made in a facility with wheat...." is to ignore the label as it means nothing. There is still no definition for GF in the US. It is impossible to test to 0 gluten.
Interesting...

If nothing else, it's a flag for you to call the company to ask about how they clean their lines between runs. After that - you'll have to decide.

I too am guilty on spreading the [false] fact on the testing in Italy.

Thanks Anne for the BrainDump!!

[jcc]

Very :cool: to hear the report on Dr. Hadjivassiliou!!! I'm happy you got to meet him :D. I'd love to hear more if you have time and if you can remember. I will also wait patiently to hear from Linda!

Cara

[annelb]

Deb, wish you could have joined us here. I am too tired to write tonight. I am heading home tomorrow and will get my notes organized and write more later. One disappointment is that there is very little interest in gluten sensitivity. Besides Dr. H, I heard only one other doctor mention the need to include those with gluten sensitivity in studies. Most of the speakers felt that if the biopsy is not positive, then you do not have CD. "There is no evidence that everyone will go on to develop CD so why subject them to a life of GF living." I am sure that if there were a pill, everyone with antibodies would be treated. Maybe a similar situation is high cholesterol. I doubt that doctors know how many people or who will develop heart disease but they sure are quick to offer a pill to everyone.

See you when I get back to Little Rock,
Anne

[diamondheart]

One disappointment is that there is very little interest in gluten sensitivity. Besides Dr. H, I heard only one other doctor mention the need to include those with gluten sensitivity in studies. Most of the speakers felt that if the biopsy is not positive, then you do not have CD.

Anne

That is disappointing. You'd think in this day and age that our testing could get more sophisticated than a biopsy. Do we all have to wait until our small intestines are smooth until we get some treatment :mad: . Sheesh! Makes you wonder if it's an insurance conspiracy (endoscopies are bigger money makers than blood tests).

Claire

[annelb]

Cynthia Kupper, the head of GIG was another person who mentioned gluten sensitivity as being a problem that needs to be addressed.

So many speakers said that it can take years for the villi to heal. So if you treat before severe damage maybe healing will be more likely :confused: It was also said that after the villi heal, it can take many years for some to show damage again. I think the longest time mentioned was 19 years. I wonder how many people have been told they do not have CD who had been diagnosed years ago because a gluten challenge of a few weeks did not show redamage?
Anne

[JudyLV]

Hi Anne,
I have enjoyed reading your posts on the conference. Sounds like you were very busy. Did you get a chance to go out on the town? By any chance did you hear anything about low cholesterol/triglycerides being related to malabsorption/CD?
--Judy

[annelb]

Judy, I did not have time or energy to go out on the town. I was supposed to arrive early afternoon. Because of rain I did not get to the hotel til about 4:30 and I was exhausted from traveling all day. The meetings ran all day long and there there was the evening dinners. I guess I could have gone out on Sunday morning but it was a gray day and I think I am now paying the price of getting off my mostly whole foods diet. I think I need to fix a pot of chicken/cabbage soup and do some healing.

For the beer drinkers. There is a new beer that everyone said was really good. It is actually made from barley and then the barley is removed. They are trying to get FDA approval for sale in the US. It has less than 20ppm gluten. http://www.saxonbeer.com/Saxon_beer.html

If you look at the chart in this website showing testing of gluten you will see "Sandwich-R5" and "Competitive-R5" used to test for gluten. There was a talk about these tests. It was very complicated but apparently different tests need to be used depending if the gluten has been heated or hydrolysed. After listening to this presentation it made sense why there is no accurate method to quickly test food before we eat them.

One person asked about glucose syrup that is made from barley. With the new labeling laws it has become very confusing when food manufactorers make statements about foods made of gluten derivitives. Here is what I found on Glucose syrup. http://www.efsa.europa.eu/etc/medialib/efsa/science/nda/nda_opinions/683.Par.0001.File.dat/nda_opinion12_ej128_finnsugar_en1.pdf
Anne

[annelb]

Two quick comments on T1DM and CD.

One doctor had a slide that showed that there were less adults with CD than children and that is why the current recommendation if for all children with T1DM to be screened for CD. He also mentioned that they did not know why fewer adults with T1DM had CD. One possibility was that adults with both diseases die sooner but this has not been studied.

When talking about quality of life, one physician mentioned that must be considered before testing children with T1DM. They already have one life changing disease and, if they are not having symptoms, perhaps it is best not to test for CD and give them another. I wonder if he suggests that T1DM's not be watched for kidney disease or HTN unless there are symptoms. :confused:
Anne

I can give you doctor names if you need them. I will have to dig them out of my notes.

[OZZ]

Hi everyone, yes, I really was there with Anne...she just has a lot more energy than me! The days were so long that they really did us both in every night. I also had a little relapse before leaving for the conference so I was not at my best mentally.

I did want to comment on what a great opportunity the Conference was and how many interesting people we met.

About the diabetes comments. I too was disappointed because I have a brother dying of Type 1 diabetes. He was diagnosed at 4 years old. He has had many difficulties over the years that I would guess could have been related to Celiac. He is a DQ2 and DQ8. He had a double transplant (pancreas and kidney) in 1993 and is now loosing function of his kidney.

So, if they had found this as a youngster, would they have prevented the kidney damage? My guess is yes.

[annelb]

This is not on PubMed yet but an article has been released about the increased risk of T1DM if a person was diagnosed with CD as a child. http://www.medindia.net/news/view_news_main.asp?x=15875

I wonder if that doctor who feels that it is too much of a burden to a child with T1DM to be checked for CD if not having symptoms feels the same about checking for DM in a child with CD?
Anne

[annelb]

Dr. Fasano talked at the symposium but not at the general meeting that OZZ and I attended. Here is the press release of this talk. I will also add it to the Dr. Fasano thread. Zonulin looks promising. Phase II trials are underway.

Anne

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/11-13-2006/0004472513&EDATE=

Alba Therapeutics Presents Data from Positive Phase Ib Clinical Trial at the XII International Celiac Disease Symposium

NEW YORK, Nov. 13 /PRNewswire/ -- Data presented on November 11th at
the XII International Celiac Disease Symposium in New York City show that
when AT- 1001, an investigational oral zonulin receptor antagonist being
developed for treatment of Celiac Disease ("CD"), was assessed in a double
blind, placebo controlled study of CD patients, the product induced a
positive result on the trial's primary endpoint, intestinal permeability.
The objective of the Phase Ib proof of concept study was to establish the
safety, tolerability and effectiveness of single doses of oral AT-1001 in
adult CD patients in remission that are challenged with a large dose of
gluten. Key findings from this Phase Ib study include:
* Intestinal barrier function was maintained by AT-1001 despite a
supramaximal stimulus with gluten. There was a significant increase in
permeability in placebo recipients but not in AT-1001 recipients following
the 2.5 gram gluten challenge, as determined by urinary
Lactulose-to-Mannitol (L- to-M) ratio.
* AT-1001 was generally safe and well tolerated, and no serious adverse
events were reported.
* AT-1001 plasma concentrations were unmeasureable (< 0.5 ng/ml),
indicating little to no systemic absorption when administered orally.
* The biological effect of AT-1001 persisted beyond the drugs residence
time, suggesting that AT-1001 modulates both persistent leak and immune
activation.
* Symptoms of acute gluten toxicity were inhibited in the AT-1001 arm
when compared to placebo.
"AT-1001's inhibitory effect is most likely related to its capacity to
prevent zonulin binding to its receptor on the lining of the gut, reducing
exposure to gliadin and immune activation," stated Blake Paterson, M.D.,
Alba's Co-founder and CEO. "We are excited by the demonstration of a
systemic immunological benefit arising from a physiological event at a
mucosal surface of the small bowel, and look forward to completion of our
Phase II clinical trial to further assess AT-1001's impact in this
debilitating disease."
About AT-1001
AT-1001 is an orally administered octapeptide zonulin receptor
antagonist that appears to exert its inhibitory effect on gliadin-induced
tight junction disassembly by blocking putative zonulin receptors on the
luminal surface of the small intestine. Pretreatment with the peptide fails
to inhibit gliadin induced zonulin release, while administration of zonulin
analogues or gliadin in the presence of AT-1001 fail to significantly
affect intestinal permeability, confirming the effect of the molecule is
specific to the zonulin receptor. AT-1001 is currently under investigation
in a multicenter, double blind, placebo controlled Phase II dose ranging
study to evaluate the safety, tolerability and efficacy of AT-1001 in 79 CD
subjects during gluten challenge.
About Zonulin
Zonulin is an endogenous signaling protein that transiently and
reversibly opens the tight junctions between the cells of epithelial and
endothelial tissues such as the intestinal mucosa, blood brain barrier and
pulmonary epithelia. Discovered by Alba's co-founder, Dr. Alessio Fasano,
zonulin appears to be involved in many disease states in which leakage
occurs via paracellular transport across epithelial and endothelial tight
junctions, and thus may play an important potential role in the treatment
of autoimmune and inflammatory diseases.
About Celiac Disease
Celiac disease is a T-cell mediated auto-immune disease that occurs in
genetically susceptible individuals and is characterized by small
intestinal inflammation, injury and intolerance to gluten. According to the
National Institutes of Health, CD affects approximately 3 million
Americans. The only current treatment for CD is complete elimination of
gluten from the diet, which results in remission for some patients.
About Alba
Alba Therapeutics Corporation is a privately held biopharmaceutical
company based in Baltimore, Maryland. Alba is dedicated to commercializing
disease-modifying therapeutics and vaccine and drug delivery adjuvants
based on the zonulin pathway. Alba's lead molecule, AT-1001, is targeted
towards the treatment of Celiac Disease and Type 1 Diabetes and other
autoimmune diseases.
Contact: Stuart Sedlack, SVP, Corporate Development
Phone: 410-319-0780
E-mail: info@albatherapeutics.com
Web site: http://www.albatherapeutics.com

[RathyKay]

Anne, I just wanted to say thanks. I have enjoyed reading your updates on the conference, even if I waited until the end to say so. I am disappointed you didn't figure out how to pronounce Dr. H's name.:p

I'm trying to remember... on the comment about gluten being associated with epilepsy only with brain calcifications... is it Hanna from Paris who has seizures from gluten? Do you have brain calcifications, or are you the exception to the "rule?"

Busymommie / Denae (now going by Denae)'s daughter Riley is still having out-of-control seizures after going gluten-free. I *think* Riley's MRI is clear (no calcifications). So, while gluten is probably a problem based on her bloodwork, it's not the miracle cure they prayed for. Anyway, I'm just trying to put a few puzzle pieces together to see if I can make any sense of it all...

[annelb]

Anne, I just wanted to say thanks. I have enjoyed reading your updates on the conference, even if I waited until the end to say so. I am disappointed you didn't figure out how to pronounce Dr. H's name.:p

I'm trying to remember... on the comment about gluten being associated with epilepsy only with brain calcifications... is it Hanna from Paris who has seizures from gluten? Do you have brain calcifications, or are you the exception to the "rule?"

Busymommie / Denae (now going by Denae)'s daughter Riley is still having out-of-control seizures after going gluten-free. I *think* Riley's MRI is clear (no calcifications). So, while gluten is probably a problem based on her bloodwork, it's not the miracle cure they prayed for. Anyway, I'm just trying to put a few puzzle pieces together to see if I can make any sense of it all...

Sorry to hear that Riley is still having severe seizures.

The only seizures that are absolutely linked to CD seem to be those with cerebral calcifications. But we all know that gluten sensitivity is more than celiac disease. I was hoping that Dr. H had looked into the possibility of seizures with gluten sensitivity. We have had people on this forum whose seizures have been helped by the GF diet.

Has Denae looked at the ketogenic diet for seizures? http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/

Every time I heard Dr. H's name said, it was pronounced a different way and often mumbled. I don't think anyone knows how to pronounce it other than Dr. H :rolleyes:
Anne

[NancyM]

I've been a fan of low carb (aka ketogenic diets) for a long time. I ran into a woman once who had epilepsy and found a low carb diet helped her out.

[OZZ]

I took horrible notes....I gues my brain is still a little messy...but, I did write out the pronunciation of Dr. H. This is how I heard him introduced.

Ha..ja..va..sill..e..o first four vowels short and last 2 long.

Is this right Marios?????:D

Of course this is like the telephone game and all my notes...what I heard and what I wrote down could be 2 different things!:rolleyes:

[jcc]

Wow...ending with long e-o! This will take me a while to undo in my brain!

I can't wait for the zonulin and "other autoimmune" disease research to come forth!

Cara

[canoe]

Anne,

Thanks for all the notes. It sounds like an interesting conference and I am sure that you and Linda enjoyed it.

Marilyn

[NancyM]

Hmmm... perhaps we should pronounce it:

Ha..ja..va..sill..e..ak

[annelb]

Hmmm... perhaps we should pronounce it:

Ha..ja..va..sill..e..ak

Took me three readings before I got it - LOL :D
Anne

[Hanna]

I just read an article saying how gluten free helps epilepsy if you stay on medication. I don't have calcification but other problems. In 2005, the year I and my familly went gluten free, I had 25 gm's. This year, I have had 3 gms. Of course, each time there have been other mitigation circumstances and glutening. Always two triggers (gluten and something else). I have also reduced my medication to 1/3rd of what I had been on the last 6 years so I still might have partials if I get glutened.

Where is Debbie of Arizona, she was my inspiration. Just for information, I had horrible migraines before starting epilepsy in 2000.

We have majour TYpe 1 diabetes in our family. Has anyone read Gluten for Dummies?

[annelb]

Until doctors look at the complete spectrum of gluten sensitivity they will miss many of the dis-eases that can be eased by a GF life.

Here are my notes from the International Celiac Convention. There is no guarentee that they are free from errors. Many of the speakers had strong accents, spoke fast, my brain was on overload and I was eating GF foods I don't usually eat. :rolleyes:

I put them in a pdf and they are attached here. Well, turns out the file is too big so it will have to be in 5 parts. If you want me to send you the pdf as one file you can send me a PM. Each attachment is only 3 pages.
Anne

[OZZ]

Thanks Anne,

I know how much time it takes to put together all your notes and thoughts. You did a great job and are mucho appreciated! Thank heavens you were there to take notes especially since our Celiac group leader just asked me to talk at the next meeting about the conference!

[annelb]

Please feel free to use the notes and share them with others. And thanks for your input and proofing. :D
Anne

[JudyLV]

Thank you Anne. I have quickly read through much of this and am dissapointed that IgG food allergy testing is not recognized as being helpful. Removing foods that we reacted to (as indicated by the York IgG test) seems to be the key in symptom relief for both my younger son and myself. I agree that it would be difficult to quantify this with a study because it is hard enough to be strictly gluten free, but when you remove dairy, eggs, soy, legumes, citrus...it becomes extra hard. Although Dr. Fasano's nurse initially told me they do not fully support the IgG delayed food allergy tests, when I updated her on how well Eric is doing she said "just keep doing what you are doing".

Thanks again, I am sure it took a lot of time to compile all of that information.

--Judy

[jcc]

I have quickly read through much of this and am dissapointed that IgG food allergy testing is not recognized as being helpful. Removing foods that we reacted to (as indicated by the York IgG test) seems to be the key in symptom relief for both my younger son and myself.

Judy, this is why forums like these really ARE so important~ So we can share information like that! There have been a few more studies I've seen on IgG food allergy that support the results as meaningful in the past couple of years, so maybe sooner or later :rolleyes:. You know, there are a lot of doctors out there who still don't believe gluten sensitivity really matters either :(. But... sharing our experiences gives us strength, and thank goodness for the brave souls like ourselves who are willing to experiment with something so controversial as DIET.

Cara

[aklap]

Thanks Anne. If you send me the entire PDF, I can put it on your website if you like.