Internation Celiac Symposium

[2Boys4Me]

(Not sure if this is the right forum)

I found this on the braintalk forums. I thought this first bit was interesting.

Dr.Ciacci - from Italy. In Italy, like the UK, gluten-free food is by prescription and covered under the National Health Care. gluten-free 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 celiac disease into account for any public event. As the number of people with celiac disease 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 )

She said that there have been rumors that Italy had/has a program to screen all children for celiac disease. She said this is not true. (emphasis added by me)

Dr. James from NIH - Went over the NIH Consensus Conference of 2004. They now have a gluten-free 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 celiac disease? 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 gluten-free in the US. It is impossible to test to 0 gluten.

Almost all of the doctors speaking talk about classic celiac disease - 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 celiac disease tests can vary depending on the population tested.

Stool antibody tests - the article from Germany was mentioned without mentioning Dr. Fines reply. Open Original Shared Link 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 celiac disease when he finds dental enamel defects or canker sores. He said that children with celiac disease did not have more cavities than "normals" but adults with celiac disease 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.

[AndreaB]

Thanks for posting this Linda. Interesting.

[2Boys4Me]

Yes, I didn't realize the routine testing of kids in Italy was an urban myth. I've heard that from so many different sources.

[sagemoon]

Very interesting. I went to the link on the fecal testing and there is a 'reply' tab on that page to read Dr. Fine's reply. My husband and I were just tested by Enterolab and believe the test is valid. Thanks for the investigative work, it is very helpful to hear as much as possible in this ever evolving issue.