Today’s post is short and to the point.
I was researching what would be important today to those with celiac disease. Searching Google Scholar for things I can read, understand, and think are important to those of us living with the disease. Here is one I thought would be interesting.
Research on Celiac Cataloged
Scientists wanted to catalog the type and information contained in celiac research from 1980 to 2018. They looked at 38 years of research and found 6,545 articles. That is 172 articles per year. Most of the studies were from Italy – the land of pasta. Ironic right? But not really, they know a lot about celiac disease.
The conclusion of the article stated, “Despite the advanced research on the diagnosis, pathophysiology, and treatment of celiac disease, the global research level about the disease is low.” So, they what it is, how to diagnose, what happens in the body, and theoretically how to treat it – but for all of us that aren’t doing better is this enough?
Celiac disease feels like the red-headed stepchild of diseases. Celiac gets very little research dollars. The burden of treatment falls 100% on the patient.
I think a lot of us aren’t getting much better for a variety of reasons. But I think the main reason is our dependence on processed foods. I see lots and lots of posts that say that they just got diagnosed with celiac and what are the best breads, pastas, and crackers for them to eat.
I went through that phase and I think lots of those with celiac do. But our mentality needs to be – not how do I replace the foods that were not great for me with their gluten free counterparts. But what foods are naturally gluten free so that I can improve my diet and eat better.
Please also, don’t get me wrong. I eat plenty of junk food but for the most part it is naturally gluten free junk food, like tortilla chips and Frito’s and M&M’s and ice cream. I fry onion rings. I’ve made gluten free doughnut holes and finally got my fried chicken tenders where I want them after lots and lots of practice.
I think Michael Pollan said, “Eat whatever you want, just so long as you cook it yourself.” I think this is a great place to end.
But, that aside, what can we do to ensure more research is done for celiac disease.
How can you help?
First, participate in research. I talk about research studies all the time. I will post more about the currently active trials a little later today. Not all research studies involve consuming gluten. Some involve simply tracking symptoms and what someone eats over a period of time.
Second, let your Congressperson know about your disease and encourage them to enact legislation supporting new labeling laws. I can think of the Gluten in Medication Act that is currently sitting in Congress.
Third, advocate within your community. Support gluten free restaurants. Talk to your friends about celiac disease. Post information occasionally with facts about celiac disease. I did a month’s worth of posts for Celiac Awareness Month in March. The archives should have them all ready to go for you.
Finally, I simply want there to be more for us and the only way we can get it is to advocate on our behalf!