Today, I wanted to talk about the big picture in the celiac world.
I’ve written over 750 articles on celiac disease since 2018. Posts range in topics from how to ensure your order is gluten free at a restaurant to how I got glutened at home. I’ve posted about personal things, like why I named my site Fat Celiac. I’ve posted rants and raves about why living with celiac disease is so hard. Researched the science behind celiac and tried to break it down into simple, easy to understand terms.
When I started writing, I thought a cure for celiac was around the corner. I thought for sure, by now, there would be something on the market to help. I was a little naive. It takes about 10 years from the first patient dose to FDA approval, even with fast tracking. I missed the mark on that one, but have hope.
Pharmaceutical companies have drugs in clinical trials, but many are unwilling to participate. The biggest issue is that celiac patients are afraid to ingest gluten and there is no way to get around this. Drug companies offer comfort measures for people who are on placebo while ingesting gluten, which is a huge improvement over previous study designs.
I still have faith there will be some help by 2030, but a cure will be longer off. In my world, help is an adjunct to the gluten free diet to prevent cross contamination exposure. A cure means a return to a gluten containing diet.
In 2018, the FDA’s allergy label laws had just taken effect. While there is room for improvement, the allergy labels are great. Allergen labels should include barley and rye. The FDA has said no. An act of Congress is required to get rye and barley on allergen statements.
Being gluten free is no longer the butt of many jokes. While there is still a jab or two, we aren’t being made fun of much anymore. Restaurants have “gluten friendly” menu items, which simply add more confusion and difficulty to our lives.
Claims that gluten removed beer is gluten free infuriate me. I might be overblowing this one. One can claim gluten is removed from beer but there is no way to confirm. This reminds me of the times before the 20ppm standard for gluten free labels on food. It is buyer beware in the gluten removed beer world.
Better testing for those on a gluten free diet for celiac and non-invasive monitoring of celiac disease damage should be here by now. They aren’t and it is disappointing. I thought we would be here by now.
Oats. The American Academy of Gastroenterology says oats should be eaten by those on a gluten free diet. They tested raw oat protein in a Petri dish and found it didn’t cause damage or a reaction in celiac patients. That’s not the real world. In the real world, oats often remain a cross contamination issue.
To that end, my blog posts are supposed to be encouraging, supportive, informative, and a beacon of hope. My goal is to show that there is a way to live with freely while having celiac disease. Celiac disease is a lot easier to navigate today than it used to be. I hope in the next few years it will either be even easier or unnecessary.