An Open Letter to the Columbia University Celiac Disease Center

Dear wonderful Columbia Celiac Center Researchers,

First, thank you so much for studying gluten in probiotics. It’s a big deal, and something all of us were blissfully unaware of until last weekend. It’s gotten a ton of press, and gotten the Celiac community talking and worrying, largely because there is no list of the probiotics tested.

That’s where I’m really disappointed in the email I just got from Columbia Celiac Center which says:

We have not named each probiotic, principally because there is so much batch-to-batch variability based on prior studies of supplements that we would not be comfortable declaring any probiotic safe. We usually do not recommend probiotics in the treatment of gluten related disorders.

It is unfortunate that concerned patients are looking to us to police this issue, and we frankly do not have the resources to take on members of this large industry one by one. We hope that the public will direct this concern to regulatory authorities, who are ultimately the only ones with the ability to solve this problem.

Peter HR Green, MD

Phyllis & Ivan Seidenberg Professor of Medicine

Director, Celiac Disease Center at Columbia University

I totally understand not wanting to declare any probiotic safe. But why no heads’ up on supplements that have over 20ppm gluten, ESPECIALLY those labeled gluten-free?

Per the study abstract: “Of the 15 labeled GF probioitics, 8 (53%) contained gluten, including 2 (13%) that contained > 20ppm.

So…you found supplements that are illegally labeled, and the plan is…do nothing and wait for something to change?

Also, let’s get this straight: there are no effective regulatory authorities in the U.S.. The FDA doesn’t have the time, the funding, or the legal mandate to pursue testing every probiotic on the market for gluten. The DSHEA act limits the FDA’s authority to police supplements in an effective way, and that’s been in effect about 20 years, so this isn’t news. The FDA only has a requirement to test specific supplements that are implicated with problems. So, if Columbia released the list of problematic supplements, enough public pressure could force FDA to act and test those supplements. But releasing an abstract with no detail leads to no effective action…and no effective solution.

If this were looking for peanut contamination in a product labeled peanut-free, would there be any doubt that a list of problematic brands would be released?

So again, per your abstract,

“24% of patients with CD take dietary supplements, most commonly probiotics.”

Please, please look out for those people and release a list of illegally labeled supplements. I’m not asking you to police anyone or declare anything safe, just to make your info public, or at least the list of problematic probiotics.

If you release the list, I will personally bake you awesome gluten-free cookies in gratitude on the behalf of the Celiac community.

Oh, and happy Celiac Awareness Month.

Sincerely,

Cheryl Harris, MPH, RD

BTW, the email contact for Columbia’s Celiac Disease Center: celiac@columbia.edu