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5 Things I've Learned While Living With Celiac Disease

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This month is the anniversary of my doctor’s office calling and telling me, “Well, your test results came back positive for celiac disease. This means you can’t have gluten. Do you have any questions? We’ll mail you a brochure with information.” I fired that doctor soon after.

It’s been five years since that phone call. Several tests, diets, “glutenings,” failed recipes and successful recipes later I can tell you – having an autoimmune disease is friggin’ hard. It’s gotten easier over the last few years with more brands, stores and restaurants being aware of what gluten-free really needs to mean, but it is a never ending story for those with the condition.

I’ve learned a lot, but here are the top five things I’ve learned over the last five years.

1. It sucks.

Yep, no sugar coating it. Auto-immune diseases suck. They can suck the life right out of you. Each person is different from the next, so there is no cookie cutter form to healing or fixing an auto-immune disease. This means you can go through several treatment options to try to fix the symptoms, or even the cause – and some may help, while others not at all.

Not to mention the pain in planning, eating, supplements, sleep, or explaining how your body hates itself. It’s not easy, but we are all doing our best in any given moment.

2. People will ask questions.

I used to feel awkward talking about celiac disease and answering what are very personal questions that come up in any ordinary conversation.

Instead of being embarrassed or feeling like I’m a pain in the ass because of my dietary needs, now I use it as an opportunity to educate.

No, I don’t avoid gluten to stay fit.

No, I can’t have any gluten at all.

Yes, I can get violently ill if I have the teensiest bit.

Yes, this is why I usually eat beforehand or bring my own meals.

Yes, cross contamination is a real thing.

Yes, there is actually a lot of food I can eat.

Now, I enjoy having the conversation – let’s talk about it and all learn a little something! Just like anything else, education is important so people can understand what’s going on – and in my experience, most people want to understand.

Let’s always assume that we are all doing our best.

3. You never know what someone is going through, so please give some grace.

I get told all the time that I look healthy, happy, cheerful. For the most, part I am. But most people have no idea that for months my days looked like this:

8 a.m. – 11 a.m.: Wake up after sleeping 10-12 hours. Eat breakfast, judge how my day would go by how breakfast settled. Walk my dog.

12 p.m. – 1 p.m.: Teach a yoga class.

1 p.m. – 3 p.m.: Eat a snack if breakfast settled OK, then nap for one to two hours.

3 p.m. – 5 p.m.: Chores, if I can. Prep food if I can. Walk Rosa, the dog. Maybe eat again. Maybe.

5 p.m. – 7 p.m.: Teach another class

8 p.m.: Bed for another 10-12 hours.

That was only six months ago. And this still happens when I get glutened. Five years ago my reactions and symptoms were somewhat different with anxiety, brain fog, acne and cavities.

This has caused me to lose friends, jobs, dates and I’m sure patience of those people who have stuck with me.

It’s not a contest as to who has more shit going on. Everyone has stuff. Everyone’s stuff is different. This is about assuming the best, rather than the worst in people.

Remember, everyone is doing the best that they can in the moment they are in. Even you. Right Now. Good job. Keep it up.

4. Our bodies are pretty amazing.

I never really appreciated what my body was capable of until I got diagnosed with celiac.

I’ve successfully avoided any long-term medication and even got off my anxiety medication. With learning about my body and it’s needs through my functional medicine doctor, I was able to pinpoint why I was so exhausted, why my joints hurt, why I couldn’t seem to get any better and what I needed to do to fix those things.

I’ve seen my body bounce back and get healthier than I’ve been in years. I still have struggles and am continuing to learn. I will always have celiac disease, but I have avoided other medications or diagnoses I was on the path to developing – lupus, rheumatoid arthritis, diabetes, to name a few.

Even our bodies are doing the best they can do at any given moment. Give it what it needs to flourish.

5. People are awesome and mean well. 

When I found out about my diagnosis I was a couple weeks away from attending what is one of my favorite events of the year – Friendsgiving. Obviously, Friendsgiving is all about the food. My dear friend who organizes Friendsgiving researched with me to ensure that the turkey, ham and mashed potatoes were all 100 percent gluten-free – I brought other side dishes for myself. Every year since, she makes my own gluten–free gravy and has dedicated counter space for my gluten-free servings and side dishes.

My family eagerly did the same and researched all the details to ensure I could eat my favorites, not only at Thanksgiving, but for everyday meals as well. Thanks for changing your chili recipe Dad, it just wouldn’t be fall or winter without it!

However, there are such fine details that go into cooking for someone who has celiac or other food issues that buying or even cooking gluten-free isn’t enough. I have to know about the facility it was cooked in:

Was there flour flying around?

Did the cooks change their gloves

Did you use a cutting board that you’ve cut bread on?

Was the same knife used on your sandwich as it was my salad?

Then there are other food sensitivities I deal with…There are so many details.

When I turn down your incredibly thoughtful gesture of buying gluten-free cookies, it is out of fear of the unknown. Cooking something gluten-free and ensuring it’s totally gluten-free are different things. (Have you checked all the ingredients in your spices? Did you use butter that has also probably seen breadcrumbs from a knife?) It’s a lot. I know that. It’s exhausting.

Thank you for trying, it is so sweet and kind that you even thought to consider me. I know you mean the best and for that I am so thankful. Please know I mean the best when I have to decline your thoughtful and amazing gesture out of fear of any one of the hundreds of things that could make me very sick.

Moral of the story in all of this: We really are all doing our best in any given moment. Thank you. Good job. Keep it up.

Follow this journey on Allergic to My Life.

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Getty image by lolostock

Originally published: February 14, 2018
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