Monday, November 2, 2015

5 Years Gluten Free.

A story 5 years in the making. The story, my life gluten free. 5 years ago today I was diagnosed with Celiac Disease. I had no idea what that diagnosis would mean at the time. I had never heard of it before, and couldn’t spell it. I remember clearly, a co-worker of my dad’s had suggested I ask the doctor about a wheat allergy because his wife had one, and a lot of my pain and struggles sounded like what she went through. It sounded crazy to me. We live in a world where wheat is like the center of life. They tell us eating whole wheat bread is better than white, wheat pasta is healthier than regular, and now you’re telling me people are “allergic” to it? The doctor made me come in and get my diagnosis after my biopsy and blood test. I sat there almost numb. I didn’t know what this meant, or what I was to do next. The doctor told me to go to Trader Joe’s and talk to them about eating gluten free, and what foods were safe. Trader Joe’s had a nice list, but then made me wonder, is this the only place I can shop now? They didn’t have the nice variety of special items they have now: Beer, cupcakes, brownies, brownie mix… But we started to Google and scrounge the grocery store.

The first trip to the store we honestly stared at every label, we read every can, box, bag, you name it. We found some we didn’t know for sure, we took pictures and when we got home started sending emails. We wrote a forum letter and just started seeing what information we could get back. Most companies did send us replies. Within my first week we messed up, my meal came with breadcrumbs on it. I took them off and started eating. The horrible insatiable pains came back. I wanted to die, it hurt so bad. I was sitting in Borders Book Store trying to read up on Celiac Disease, living the pains of being glutened. Little by little it got better, though accidents still happen. That was really the turning point of, OK this is not something to mess with, that it’s all or nothing. Accidental glutening effects everyone differently an depending how well healed you are it affects you differently, the longer I’m gluten free as an accident happens it feel worse than the previous exposure.

There are days I feel exhausted explaining myself for the 200th time on what gluten is, and why I can’t have it. There are days I throw myself little pity parties cause I hate not having options on the go, at the airport, at a party. We look for all the things that look safest and supplement with snacks I keep in my purse. I get super excited when I see Gluten Free Beer on a menu, even if it’s a beer that I don’t like that much, it’s still there. I’ve had to learn how to be creative with making meals from scratch to satisfy a craving. I’ve had some really awesome supportive friends and family along the way that have helped make the journey easier. Even if it’s someone who refuses food with me so that I have someone to eat with later. Or someone who orders gluten free off the menu so we can share food with each other. Or just a simple question to make sure a party has gluten free options that everyone will enjoy.

For us with Celiac Disease it’s a journey, it’s a lifestyle, it’s more than a diet. A diet you can have a bad day and cave to “cheat”. There is no cheating in my world. There is a definitive no. The fad diets have helped to bring some new attention to the gluten free market but also more issues. More places offer gluten free options, but you have to research and make sure they are safe. Some places just throw the term out there and assume everyone will come running and thanking them for their offers. But really unless it’s prepared safely it’s just as dangerous, because it will make us sick still. It’s highly disheartening because something will look so great, and so promising only to let you down in the long run.

I’m glad there is a lot of information out there on how to live gluten free, and how to manage the lifestyle. It has taken some intuition and some creative thinking. I hope the next 5 years are smoother than the previous; but all and all after the first year things got a lot easier as I learned my limitations and how to handle social situations and people who can just be mean, but you take the good with the bad, put on your big girl panties, and tell yourself “I’ve got this!”

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