A word about Celiac disease

I get frustrated in this celiac world. Frustration about not being able to eat what I want and being sick all the time. But there are two ways to deal with it – change something or wallow in the frustration. Today is a pep talk about how to change.

Social Media

I read a lot of celiac blogs, facebook groups, and celiac research. Most of what I read online from these bloggers is about the frustration and pain of celiac disease. It is about what foods are gluten free and how to get over being glutened. How to handle social issues and other issues all around celiac disease.

All of these are important factors to dealing with celiac disease. No matter how careful we are, inevitably we all get glutened. We need some strategies on how to deal with eating gluten free. Sometimes you gotta bounce ideas off someone else going through the same thing as you. Support in dealing with this disease is important and social media is a great place to get it.

However, the dark side of social media can suck you in and not let go. It can make you scared to eat most anything and afraid to go out. Social media can make you socially difficult to deal with because you feel empowered to demand everyone bow to your food issues.

It can make you want to wallow in your disease.

I’ve been there. About 5 years into my diagnosis, I started reading social media about celiac. I started really, really questioning what I was doing. It caused me to believe every symptom I was having was related to gluten. I felt outrage that the whole world did not revolve around my disease. It was a challenging time in my life in dealing with celiac disease.

Living with Celiac

I created this blog to counteract the stuff I was reading. People with celiac disease right now, have many things to overcome. While science knows a lot about the disease process, they don’t study how to live with celiac.

I complain a lot about studies to evaluate the more social aspect of celiac disease. I would have thought science would already know about what foods are safe and what isn’t. But I am grateful social studies are finally being done.

My control over my environment is absolute. I control what I eat at home. We focus on eating whole foods and naturally gluten free foods. I try to limit processed gluten free foods. Personally, I don’t trust gluten free processed foods to be gluten free enough for me. Even certified gluten free foods have the potential to make someone with celiac sick if you eat enough of it.

My attitude in social situations dictate how people react to me. I am simple and direct in my requests for gluten free foods. Responses are met with a thank you. At restaurants and with friends, I get gluten free foods and often enjoy safe meals outside my home. If there isn’t a safe meal, I enjoy the company and ambiance.

Just because I have celiac, the world doesn’t revolve around me.

Pep Talk

Science is finally working towards solutions for celiac disease. Scientists are finally studying how celiac disease affects social, emotional, and physical aspects of a person’s life. Medicines to help with celiac disease are finally in clinical trials. Eating naturally gluten free foods are the best for those with celiac disease. These are all the things we know.

I think we are in a much better place than we were a few years ago in celiac research. I have hopes that we will have a cure or at least something to help soon. We need to keep pressing for more clear food labels, the Gluten in Medication Act, and a cure for this disease. I can almost see a world of not being so consumed with gluten free foods sooner rather than later.

Post-Scipt

This whole post was sparked by a blogger that consistently complains about gluten free foods and is constantly sick. Their most recent post complaining about being sick again really stuck in my craw. This person in particular never advocates for change and poo-poos any hope of a medicine to help the community. I’m just deeply saddened that someone with such an audience doesn’t use their platform differently. Don’t ask me who it is because I am not going to tell.