A mini gut allows scientists to study the way gluten affects the intestine in those who have celiac disease
Studies also show evidence of how frequently patients are exposed to gluten, especially on the weekends
Note from Alice:
Dear Beyond Celiac Community,
I’m not sick!
I need accommodations!
I do not have a disability!
I got glutened and spent the night vomiting (or weekend with a migraine or fill in the blank)!
I’ve got it under control! I don’t mind not eating out or having to take my own food. It’s my new normal.
I’m so upset that I can’t just live my life free from the worry of gluten exposure and the stigma of having to live this way.
If you have celiac disease, you may have said all of these things at one time. It’s what we at Beyond Celiac have started calling the Celiac Disease Paradox. Healthy but not always. Well-adjusted but struggling sometimes. Empowered yet dependent on others whom we have to trust to keep our food safe.
Those of us with celiac disease have to think about everything we put in our mouths from the time we wake up to the time we go to sleep. For me, as CEO of Beyond Celiac, despite the fact that I am extremely careful, I still get glutened. Just this week I attended an event and did not trust any of the food, so I didn’t eat. I hear stories like this from people in our community all the time. We are never free of the worry and vigilance.
What’s more, I will never be free from my history of loss due to celiac disease – the lost years, the loss of multiple pregnancies, the loss of my daughter Emily to a full-term stillbirth. All because of celiac disease. Do I like to think of myself as suffering? Certainly not. But we cannot deny that celiac disease causes suffering. In fact, studies show the perceived burden of the disease by those who have it is second only to the burden reported by those who have end-stage renal disease.
Most people don’t know the challenges of living with celiac disease and struggle to understand how dangerous gluten is to our community, even if they know someone who has celiac disease. We can’t just settle and put up with the status quo. We need more. We need better. We need to be able to eat without fear.
As we discussed at the recent 3rd Annual Beyond Celiac Symposium, the research community is poised for some big break-throughs that will be real game-changers. And Beyond Celiac as the trusted voice of the community is making sure that our collective voice is being heard. You can help create a future that will be better for us, our kids and our grandkids. I urge you to sign up for our patient registry and platform, Go Beyond Celiac. We will be rolling out a first-of-its kind app later this month that will make it easy and enjoyable to tell your journey about celiac disease before, during and after diagnosis. Please join. . It’s time for us to eat without fear and live life to the fullest. Researchers can’t find the right solutions if they don’t know our real challenges.
To Living Life Beyond Celiac,