CYE Summer Camp

Last weekend GFNYC offered a glimpse of the program for gluten-free kids at California's Camp Arroyo. This weekend, let's take a look at this summer's Coeliac Youth of Europe (CYE) camp for young adults.

CYE has convened such camps nearly every summer since 1999, each time in a different country. This year's event, which took place in Finland and involved young people from more than a dozen European nations, included a lecture from pediatric disease celiac specialist Markku Maki in addition to many outdoor activities. I think it'd be great if CYE would agree to host some gluten-free campers from outside of Europe, just to enhance the experience and increase the understanding of celiac disease as a global health issue.

Here is a "welcoming video" for the camp.



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Here's a video album looking back on the experience.



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And here's a brief, multi-lingual "thank you" from the participants.



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DIGESTIVE DISEASE WEEK 2008

If you've had trouble seeing your gastroenterologist this week, the reason might be Digestive Disease Week 2008, currently taking place in San Diego from May 17-22. (Yes, yes...I know that isn't a full week, but don't blame that on me!)

Looking over reports from the event, the news item that strikes me the most is that a study has found that the criteria for diagnosing celiac disease might be too stringent and in need of revision. Currently, diagnosis relies on blood tests and a biopsy. As reported at Science Daily,

Researchers studied 145 patients suspected of having celiac disease to determine if the current diagnostic criteria are too narrow. Seventy-one of the patients were found to be endomysial antibody positive, and of those only 48 met the criteria under the current definition of celiac disease. The remaining 23 patients were divided randomly into two groups. One group was placed on a gluten-free diet and the other continued a regular diet that included gluten.

Patients were biopsied again after one year following their respective diets. Investigators found that the patients on the gluten-free diet were asymptomatic, and that their endomysial antibodies disappeared as did their small intestinal mucosal inflammation. However, the patients on a regular diet continued to experience symptoms. These patients continued to be endomysial antibody positive, and showed further deterioration of the small bowel membrane, mucosal inflammation and gluten-induced lesions in the bowel.

According to Markku Maki, MD, professor of pediatrics at the University of Tampere, Celiac Disease Study Group, Tampere, Finland, patients on the gluten-free diet elected to continue the diet after the yearlong study, and the patients on the regular diet elected to eliminate gluten from their diet and over time became symptom free, endomysial antibody-free and experienced healing of the mucosal membrane.

Researchers believe that over time, patients who are endomysial antibody positive may develop the gut injury that makes up the current criteria for diagnosing celiac disease. "By redefining the criteria for celiac disease, we can treat patients before they begin to experience the most severe symptoms and signs of the disease," said Dr. Maki.

So it seems that there is now documentation that if you have a positive endomysial antibody test (EMA) while not qualifying for a celiac diagnosis under current criteria, you might still show measurable signs of improvement by adopting a gluten-free diet or, conversely, show measurable signs of decline by continuing to eat gluten. In either case, a positive EMA might well justify continued medical supervision.

In the same Science Daily article is an item about the first double-blind test of AT-1001, a drug that Alba Therapeutics hopes will treat celiac disease by keeping gluten from crossing the intestinal mucosa. "Daniel Leffler, MD, clinical research director at the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston, said that while the subjects did improve, the primary study outcome was not met. But he added that the findings are promising enough that investigators are currently conducting a larger trial over a longer time period," says the article.

Another study covered in the article looked at whether two particular enzymes could help patients digest gluten. This study seems to have shown some promise as well.

Science Daily also reports on the promise of confocal laser endomicroscopy (CLE), which uses a tiny microscope at the tip of an endoscope to provide informative real-time images that can reduce the need to wait up to a week for results. CLE enabled researchers to find 39 cases of celiac disease in 1,771 patients.

ADDENDUM Read more here and here.