Beyond Celiac is working hard to find a cure for celiac disease by 2030. Here is the link to Beyond Celiac where they discuss what they are doing to work toward a cure. I admit that I'm afraid to be excited about this possibility.
The hope is a vaccine-like therapy to train the immune system that gluten is not the enemy. To learn more about future therapies visit the Celiac Disease Foundation. A cure for celiac would change both my celiac daughter's life as well as mine. But beyond that, it would have a profound effect on my whole family. My house is gluten-free and because two of the four of us have celiac, what we eat, where we eat, and vacation, affects the entire family. It would also impact my family in the future. Currently, I worry about how likely it would be for other family members to get celiac disease. If there was a cure it would not matter.
Here are just a few aspects of how different my life would be without celiac disease:
I can eat without asking questions.
I can eat without having to read all those labels.
I don't have to talk about celiac 300 times a day when someone offers me food or asks me to go out to eat.
I don't have to live in fear of getting "glutened."
I don't have to wait for the weekend to try a new restaurant. Just in case I get sick and would have to miss work.
My celiac child does not have to eat before going to a friend's house in case there are no options.
We don't have to travel with snacks EVERYWHERE we go.
I can eat at any restaurant.
I don't have to check every over-the-counter & prescribed medication to make sure it's gluten-free.
I wouldn't feel like a pain when I need to advocate for myself and my child.
My child can eat fast food with her friends/sports team. (Who would ever be excited about that possibility?)
I don't have to do weeks of research before going to a new city/country.
My grocery bills won't be so expensive.
I don't have to deal with the non-believers.
I don't need an app to scan packages to help determine if products are gluten-free.
My bread won't be tiny with large holes.
I don't have to worry about my child going to college & struggling to eat safely.
I don't have to worry when someone leaves gluten crumbs everywhere.
I can share my food with my mom, and husband and not worry about if they ate gluten.
The burden of our celiac disease would no longer be a burden for us or the rest of my immediate family.
I wouldn't have to worry so much.
Did I say I don't have to talk about my celiac disease with strangers?
When I think of all of these possibilities I get excited and full of hope. However, I'm afraid to be too hopeful. My child and I, as well as my husband and older daughter, have lived the last ten years adjusting to our celiac disease. It is so much more than eating gluten-free food. It affects our lives in so many ways.
I think of celiac disease as having a program always running in the background. We are always on high alert. We must constantly evaluate our food and how to negotiate situations. There is a lunch and everyone needs to bring a dish to pass. What am I going to do? My celiac child has a field trip what will I send with them to eat? Will they take food or will that make them stand out? Here is a small example. Someone asks you "Do you want a piece of chocolate?" I start thinking... Do I recognize that brand? Is gluten-free? I'm not sure, what do I say? "No, thanks." "Are you sure, why not?" Do I explain that I have celiac and what that means? Do they think I don't trust what they are giving me? Are they going to think I'm rude? Should I just take the chocolate and not eat it? Celiac disease affects every aspect of our lives. It is exhausting.
Don't get me wrong I would love to have a cure for celiac disease! I guess I'm just afraid to get too excited. It would be so unbelievably amazing to have a cure but if it didn't work out it would be so unbelievably disappointing.
How do you feel about a cure for celiac disease?
Commentaires