I did not intend to write a post this week, but after reading numerous articles, blog posts, and comments regarding a recent study from the Celiac Disease Center at Columbia University showing that some probiotic formulations contain traces of gluten, I felt compelled to write this…Please bear in mind that this research has not yet been published, so all of the information I have obtained regarding the study has been from press releases, such as this one. The research findings were presented at the DDW (Digestive and Disease Week) conference this past weekend in Washington D.C. but I do not personally know anyone who attended who I could converse with.
In a nutshell, Dr. Nazareth and her team at Columbia tested 22 of the best-selling probiotics for the presence of gluten. They found traces of gluten present in 12 of the 22 probiotics that were tested (55%). Although the gluten levels were less than 20 ppm in 18 of the 22 probiotics (and therefore, considered to be gluten free by current FDA standards), 4 of the 22 probiotics had gluten levels were > 20 ppm (we do not know the exact levels as the research has yet to be published). Of even more concern was that 2 of the probiotics that contained an excess of gluten were labeled as being “gluten free.” This is a HUGE problem and a reminder that regulation of gluten-free labeling of medications and supplements is desperately needed. I hope that this research will help to pave the way toward regulation. Like many of you I have relied on product labels to determine which vitamins and supplements to purchase through the years, and I have trusted the accuracy of gluten free labels. It is disappointing but also eye opening, and I am interested to see the results of future testing for gluten in other supplements and medications as well.
What is also disturbing to me, though, are the numerous claims that I had seen posted all over the internet the last few days stating that probiotics are harmful and dangerous to all of us with celiac disease. One of the craziest articles that I came across is titled “Gluten-Free Probiotics are Deceitful and Dangerous.” Many of you have emailed and messaged me on Facebook with your concerns, and I was sad to learn that many of you are scared that you have been both “poisoning” yourselves and your children by giving them probiotics, because you haven’t!!!
Dr. Benjamin Lebwohl, an assistant professor at the Celiac Disease Center and a co-author of Dr. Nazareth’s study, has been quoted as saying: ”We know that most patients with celiac disease only develop intestinal damage when consuming more than 10 milligrams of gluten daily, and it is unlikely that contaminated probiotics can lead to that amount unless patients are ingesting mega-doses.” As I posted earlier this week on my Facebook page, when I did calculations based on the probiotic that I take, Florajen 3, I found that in order the reach the 10 mg/day threshold that I would need to take more than 1000 probiotic capsules/day if there was 20 ppm of gluten in each capsule. Even if I subtracted out the average 3-5 mg of gluten per day that all of us on GF diets inadvertently ingest, I would still need to ingest over 500 probiotic capsules per day to reach the 10 mg/day threshold–I based these calculations on my 460 mg capsules each containing a hypothetical 20 ppm of gluten, and I’d be more than happy to share the equations if you’d like.
I opted to start to take a probiotic, Florajen 3, back in 2013 as I learned more and more about the importance and the influence of the microbiome on overall health and immune system functioning. I began to delve into all of the research articles on PubMed.gov postulating that there may be a link between having an overgrowth of harmful bacteria and the later development of allergies, autoimmune conditions, and inflammatory bowel disease. I also came across several studies showing that patients with celiac disease often have imbalances of their gut bacteria as well, both prior to and after diagnosis.
I have been very happy with my probiotic. Since starting it my digestion and IBS symptoms have significantly improved, my acne has virtually disappeared, and the additional food intolerances that I developed after going on the gluten-free diet have improved as well. It has also helped me in the management of mast cell activation disorder, a disease of the innate immune system which I developed after my celiac diagnosis.
I am a “super-sensitive” celiac when it comes to gluten cross-contamination–I get neurological symptoms–and I have never once developed symptoms that I can trace back to my probiotic. I contacted American Lifeline, the company that makes Florajen products, earlier today and I was assured that all of their products are gluten free (< 5ppm of gluten), that they test for the presence of gluten, and that none of their products contain wheat or gluten. I feel comfortable continuing to take it.
I know that we all have differing experiences with celiac disease and that we all need to make the best choices for our own health and well-being. I just wanted to share why I am opting to continue to take probiotics, despite the current fear and controversy…
Thank you for reading and please bear in mind that I am tired and stressed right now as we prepare for our upcoming move with 4 kids to Boston. And that I might not get a chance to moderate and respond to your comments right away. So please be gentle with me
Disclaimer: This post is my personal opinion and is not intended to be used as medical advice. I encourage you to discuss your health problems, concerns, and questions with our own physician. I also do not have any sort of financial stake or formal relationship with American Lifeline, the makers of Florajen 3.