Ep 85 The State of Celiac Research with Dr. Leffler
Let’s start the blog with the show notes for this Episode –
The State of Celiac Event held by the Canadian Celiac Association in May was a valuable opportunity for researchers, food producers, physicians and dieticians to present their work to each other, network, and advance the interests of those with celiac disease. I am pleased to be speaking with one of the presenters on this episode – Dr. Daniel Leffler of Beth Israel Deaconess Medical Center and Medical Director leading up the Celiac Disease Program at Takeda Pharmaceuticals.
Dr. Leffler spoke with me about the different streams of current research. We talked about the practicality of the different treatments and cures being investigated, as well as the impact on quality of life for celiac patients. Our discussion highlighted the diverse approaches being taken to find a cure, as well as comparing celiac with other conditions, and what makes this a particularly challenging disease to overcome. I was left with a real sense of hope that doctors and researchers are pursuing different strategies to find a cure, and improve our quality of life. The gluten free diet is an imperfect treatment, and it’s comforting to realize that the medical/research community is looking beyond the gluten free diet for a cure.
Sue’s Websites and Social Media –
Podcast https://acanadianceliacpodcast.libsyn.com
Podcast Blog – https://www.acanadianceliacblog.com
Facebook – @acanadianceliacpodcast
Twitter – CeliacPodcastCA
Email – acdnceliacpodcast@gmail.com
Baking Website – https://www.suesglutenfreebaking.com
Instagram – @suesgfbaking
YouTube – https://www.youtube.com/playlist?list=PLUVGfpD4eJwwSc_YjkGagza06yYe3ApzL
(search Sues Gluten Free Baking)
Email – sue@suesglutenfreebaking.com
Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com
My Thoughts –
I’ve been involved with the gluten free diet for more than 20 years- first as a celiac patient and mother, then as a gluten free commercial baker, a cable TV baking show host, President of our local Chapter of the CCA, and now as a podcaster and author. Sitting at the presentation by the medical professionals and food producers, I was completely taken aback when I heard some say “there is no such thing as a gluten free diet”. How could this be? I’ve been eating gluten free, baking gluten free, and teaching gluten free for years.
I was comfortable knowing that everything that goes into my body was less than 20 parts per million of gluten, and that most foods labelled gluten free were more often much below that. I knew that we could only test to 5 parts per million. But I didn’t realize the significance of that. Whether it be 20ppm or 5ppm, it still means there can be some, however minute, amounts of gluten in our “gluten free” food.
This concept became more meaningful when one food producer talked about a peanut allergy. For a company to produce a peanut-free product, they must prove the product does not contain ANY peanut – not 20ppm or even 5ppm – NONE! Any amount of peanut could trigger a serious reaction and may cause death.
Thankfully, our issues with gluten are not the same as someone with a peanut allergy. We take great pains to ensure our food is “gluten free”. Our social lives, home lives and daily menus revolve around that one fact, but it will never be the same as a peanut, or shellfish, or tree nut allergy. This may not be a revelation to you, but for me, having worked to “eradicate” gluten from everything I eat, or serve to someone, this concept is still taking time to sink in. I suspect I will have to say it over and over to myself to get comfortable with the term “gluten restricted diet”. I’m sure that term will not replace “gluten free” in the food industry or with the general public, and certainly not for the newly diagnosed, but it’s a concept that makes me recognize how unique celiac disease is in the medical community.