The end of celiac awareness month

We are coming to the end of celiac awareness month. I am grateful for all of you that read this blog. We’ve also added a lot of new friends to the blog – so welcome. I started this blog for two reasons – Nexvax and science.

Nexvax

The first reason for starting the blog was to talk about my experiences in the Nexvax clinical trial. I was very, very excited about Nexvax and was hoping it would be the cure I’ve been craving. It wasn’t and it was heartbreaking. But over the last 14 or so months since the trial ended, other drugs have shown significant promise. I’m still excited at the prospect of the cure sooner rather than later.

I will also still push for everyone to join a clinical trial or research study if it is possible. Clinical trials or studies are the only way that we are going to move the science forward. Without study participants, we will be stuck without any help. There are lots and lots of clinical trials for celiac disease. Some of them involve drugs, but many don’t. For example, the DOGGIE BAG study only wanted a sample of people’s food, stool, and urine for two weeks. No drugs or gluten challenges or anything that could cause someone to not want to participate. So, please consider a clinical trial or research study in your area if possible.

Here is some other things I’ve written about trials. One was cancelled because of a lack of participation. one where they needed more volunteers. One about drugs entering trials in general.

Science

The second reason for starting the blog was to focus on the science behind celiac disease. I feel like there is a lot of misinformation in the facebook groups about celiac. I want to provide the science in the facebook groups as a counter balance to much of the information presented as facts. When the science is pointed out, often people want to talk about their experiences rather than discuss the science. I totally get it.

I try to present information based on science in this blog. I try to always cite my sources and allow you to read the information for yourself. You may come to a different conclusion about the information than I did. I might be wrong and when I am, I admit it. I’ve been wrong a couple of times.

The science has shocked me often. Sometimes I believe the science immediately because it mirrors my experiences. Sometimes it takes a little longer because it flies in the face of everything I’ve known and experienced about this disease. Sometimes, I simply let the information ruminate for a while hoping to come to a conclusion either way. I may not believe the science until I’ve seen in in 3-4 confirming studies. But I always try to take in the new information.

I will admit, I can rant and rave about things I see going on around me. I have been known to be snarky and mean. I can get pretty passionate about things I see that are inaccurate or just plain wrong in the facebook groups or other places. Not every ache or pain or rash is related to celiac disease. Not every bout of diarrhea or bloating is related to celiac. Until we understand the science of what is going on in our bodies and how it reacts to gluten, we are simply shooting in the dark. That is part of the problem.

Focus

When folks blame everything on celiac disease, the rest of the world tunes out to their issues. It is like listening to your crossfit friends talk about how hard their workout was. We sort of roll our eyes and tune them out because we hear it all the time. People often feel the same way about gluten and celiac disease. It is hard. The world revolves around food and unfortunately, so does our disease.

There are some hardcore issues we should be advocating for like better and more accurate food labelling laws, gluten in medication act, better testing protocols, better long term care follow up, more doctor education about celiac, testing for celiac even after a gluten free diet is implemented, and on and on. These things will make our lives better and we won’t be burdening our friends and family all the time with discussions of the disease.

Thank you

Anyway, as the month ends, I wanted to say thank you. Thank you for the support in reading this blog. I want to provide education and inspiration on our celiac journey together. I hope you find something you can use on a regular basis from this blog.

Happy celiac awareness month.