The Celiac Disease Paradox

May 10, 2019

The celiac disease community is caught between being empowered to take control of our well-being while struggling to do so because our only treatment – the gluten-free diet – is burdensome and unreliable

Alice Bast, Beyond Celiac CEO

Celiac disease.

It’s serious!

I’m not sick!

I need accommodations!

I do not have a disability!

I’m fine!

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 last night, 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.

That’s why we at Beyond Celiac joined with four other celiac disease organizations to partner on a provocative awareness campaign including recipe videos with dangerous ingredients. These videos are targeted to raise awareness among those who don’t already know about celiac disease or who may have confused a serious genetic autoimmune disease with a fad diet.

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. The campaign is designed to build empathy for those of us who have to be wary of every bite of food. It is provocative in order to focus attention on this reality and raise awareness with the general public.

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. We hope that this campaign can get some attention from the audience it was intended for: The people who haven’t experienced celiac disease themselves or don’t understand the risk or pain that can be involved. Who think a little gluten won’t hurt us. Who suspect we are just too fussy. If we can grab their attention, help them understand and give them a glimpse into our world, then maybe our path to living longer, healthier lives will get a little easier to travel.

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