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What It's Like: Being the Only Celiac or Gluten-Free in the Room

February 15, 2014 3 min read

Many of you have read or maybe you haven't, but I have a autoimmune disease called Celiac Disease.  It affects my every day life. If I don't eat gluten free or if I even get a micro spec of gluten, than I get extremely sick, and it can lead to further health issues.

I wouldn't ever wish this on anyone.  It's a daily challenge to make sure that nothing gets cross contaminated. I have to watch every ounce of food that crosses my mouth. If my husband and I do go out to eat, it's a constant worry of what if I get this and what if I get that. I actually told a waiter one time that if my meal got cross contaminated that I would clear their restaurant. Honestly, it's been done before...

With all of that said, it is extremely hard being the only Celiac or even gluten-free person in the room. (Some do have severe allergies rather than Celiac.) I have known about it since I was around the age of 2-3. For years, I wouldn't tell people that I had Celiac. I was embarrassed, and self conscious. I would accidentally get a small amount through something like salad dressing and it would send me to the bathroom or bedroom hiding.

It was extremely hard in elementary when my friends were eating pizza, or macaroni and cheese. I remember my mom giving me pizza toppings before we knew about cross contamination. That was a bad idea and I usually got sick, but we just didn't know. There wasn't research on Celiac. **You have to know that when I was diagnosed not much was known, and we were well blind to all the things we needed to do. Doctors didn't know a lot about the disease.  They just told me to not eat wheat, barley, rye, and caramel coloring. They didn't tell me to avoid it at all costs.

I am much better about being open about having Celiac Disease. I HAVE to be.  Part of that is because education is getting out there, plus there is a gluten free diet that is hitting the stage.  That diet has changed my life, but also has caused me to struggle as well.

Now, please don't get me wrong. I know that there are many who are choosing to go gluten-free.  I honestly admire it. In some ways, it is making my life easier and it others it is making my life harder. Sometimes things are labeled gluten free, then I read the ingredients. They aren't

**One example is modified food starch. (I usually eat really clean, but just putting this example out there.)They may label it gluten free, but that modified food starch usually contains some amount of gluten. The federal standard put on companies for marking "gluten free" doesn't meet what I am  allergic to. I am super sensitive.

Recently, I have met a couple of moms that their children have Celiac, and I feel their pain. It makes my heart hurt. I want to share with them that they aren't alone. To be honest it does feel like that. I recently read a blog about a woman who was diagnosed with Celiac. Her family wasn't willing to help her eat gluten free when she was around for family meals every Sunday.  She can't enjoy a meal with her family now. I have been told I was making things up, that I wasn't really allergic, that I needed to suck it up, or that I _____(fill in the blank.)

I know that others who have Celiac,  feel the same way. My hope is that this blog helps to educate people. People who DO have Celiac or DO have a gluten-allergy usually feel alone.  They feel like they are being a hindrance, please don't put them in that position. It's hard being the only gluten-free person in the room. Please give them a break and help in whatever way possible - even if that means just being okay with them not eating/bringing their own food.

 


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