These are my notes from the private conference call I mentioned I was invited to attend last Thursday with the North American Society for the Study of Celiac Disease (NASSCD).
First off, there was a short introduction about the NASSCD. It was founded last year by Dr. Stefano Guandalini, the founder and president of the University of Chicago Celiac Disease Center, to bring together the international medical community that is taking the lead in researching celiac disease and related disorders. There are 30 founding members from all over the world.
The theme of this discussion was “Is it Gluten-Free Or Not?”
Dr. Guandalini said that it was time for the medical community to speak up due to the recent confusion about what the definition of gluten-free is. They wanted to send out a message from a “strong and clear voice based on facts and research”.
He stated that it is a pity that North America still does not have a food industry standard for use of the term “gluten-free.” It has been 2+ years we’ve been waiting on the FDA to define a standard of less than 20 parts per million (ppm) – the same standard as Europe. As of now, any company can claim to have “gluten-free” food.
Less than 20 ppm of gluten = 20 mg per 2.2 lbs
Individuals that are very sensitive may react to 10 mg a day, but studies show that 20 mg a day is what sets most people off. Some people can tolerate up to 100 ppm a day, but studies show that after 100 ppm all patients show inflammation.
Here’s the part that I thought was especially interesting…
Aside from celiac disease, which affects 1% of the population and equals 3 million Americans, there are non celiac sensitivities.
7% of bakers are affected by asthma due to inhalation of wheat
Which is a problem, because we don’t even know how to define it. We know it exists with adverse reactions. Some symptoms are similar to celiac. Patients feel better when gluten is eliminated from their diet. We are only at the beginning of understanding this situation and more research is needed. There is no change in intestinal biopsies and no specific gene.
A) No definition
B) Prevalence unknown
C) No markers for diagnosis, no tests, only relying on patient reports
So, basically, the medical professionals have a problem with any assertion that people with gluten sensitivity can tolerate trace amounts of gluten.
I personally find this interesting, since I am meeting more and more people that eat gluten on a regular basis…or restrict gluten and then binge on it…that claim “I’m just gluten sensitive”.
Dr. Guandalini explained that some people that claim to have gluten issues may have fructose absorption problems. Another possibility that needs to be studied more is a reaction to ATI – a protein in wheat.
“Can these people tolerate any amount of gluten? We don’t know. It is dangerous to say they can tolerate a little when it is not based on facts.”