Over the nine years since I started my blog and now twenty plus years since my diagnosis, I have seen the landscape change – and not necessarily for the better. It seemed to reach the tipping point this year during Celiac Awareness month as we saw celiac “advocates” truly selling-out and diminishing the actual disease, organizations that are supposed to be advocating for us making it more about the almighty dollar than advocacy, causing more confusion than anything else. Not to mention a continued string of recalls and questionable ingredients making their way into supposedly gluten-free products thanks to a grey area in FDA labeling laws. Recall after recall of “certified” gluten-free products or mislabeled items over the years and any real sense of transparency in rigor or processes in what “certified” really means has left me shaking my head – not to mention pretty much zero accountability or repercussions when anything goes wrong by any of the certification organizations.
We have more expos than I can ever remember and while I think it’s potentially a great way for people to learn more – some of the content and vendors (essential oils, multi-level marketing companies, self-testing for gluten ingestion or ingredient content, etc.) is fast becoming more like a carnival sideshow than a real vendor marketplace. In fact, I recently declined an invitation to participate at an upcoming event because I just could not get behind some of their choices. Even the publications that are supposed to be beacons for our community are now promoting questionable and sometimes downright dangerous products and items both editorially and in sponsorships. It is seriously disheartening and all of this really made me question where I fit in the brave new gluten-free world.
After much soul searching I came to the realization that while I will continue to blog, I would remove myself from any third-party discussions taking place on who is doing what or for what reason and distance myself from any conversations or affiliations with so-called advocacy groups. I feel that they are truly mudding the waters and diluting celiac disease rather than advocating and elevating awareness. There are way too many cooks in the proverbial kitchen and each has their own agenda – sometimes noble but often self-serving and at the detriment of the actual disease. Of course I will still call bullshit when necessary but just not getting caught-up in all the celi-drama.
While I respect those that have chosen to make it their livelihood and more importantly do the right thing in elevating awareness, they are truly becoming fewer and far between. It is becoming increasingly difficult to figure out who stands for what, their agenda and level of credibility. You know, I started blogging for catharsis and I have actually learned so much over the years – and continue to learn. When I was diagnosed there was so little information about celiac disease that I had to find my own way. I started my blog to chronicle my journey, missteps and all, along the way. I always said if I helped one person in some small way – then my job was done.
This is my passion project, not my livelihood. I don’t want to be a celiac-ebrity — I just want to be me. My goal has always been to bring a bit of luxury to the gluten-free world. It’s been five continents, over a million miles traveled and five hundred posts so far and I am just getting started. So, if you like my content, recommendations and posts, I hope you’ll continue to follow me as I continue to carry-on what I started nine years ago and here’s looking at year ten.