Zombies with Baguettes: dealing with Celiac Disease at work

Chasing Zombie arms with bread, a fear of those with Celiac DiseaseI had a dream last month that I was being chased by zombies… holding bread. Now, I recognize that this is not the norm – most people have nightmares about regular zombies or monsters or other variables that emphasize their vulnerabilities; but let me clarify that I have Celiac Disease. Don’t feel bad if you’re not sure what that is – I didn’t either before last Halloween.

Celiac Disease

Celiac Disease is an autoimmune disorder that causes severe damage the villi of the small intestine when exposed to gluten (a protein found in wheat, rye and barley). Basically, it means that I get really really sick when anything that contains gluten  enters my body. This includes everything from eating a bagel to eating a piece of fruit that was next to that bagel. Doctors estimate that 1 in 100 people have Celiac Disease, but not everyone has physical symptoms. Personally, I can have all of the classic Celiac symptoms: abdominal bloating and severe pain, vomiting, fatigue, and what I like to politely refer to as “GI Distress”. It sucks.

A Halloween Diagnosis

I was diagnosed with Celiac on Halloween 2012. I had gone my entire life eating cereals, toast, cupcakes, and everything else containing gluten – when all of a sudden the symptoms started around the end of 2011. Out of nowhere, I’m in a ton of pain and experiencing horrible digestive problems – and I didn’t know what to do. I lost 60 lbs within 3 months – which sounds a lot better than it actually was. It hurt. A lot.

I was also really embarrassed. My symptoms weren’t something I really wanted to advertise – they were gross and I felt gross. I couldn’t figure out why I was super sick and felt tired all the time, and I didn’t want to confess to my boss and coworkers why I kept calling out. I felt trapped.

After nearly a year of my health getting progressively worse, I went to the doctor. A month of invasive tests with my Gastroenterologist ended with a call during work to give me a diagnosis: Sprue, aka Coeliac Disease, aka Celiac Disease. I had never heard of Celiac disease and was really scared and confused about what this all meant.

Telling Someone… Then Everyone

I hung up the phone and wandered over to my co-worker, Rob Ostrow. In shock, I told him about the news from my doctor and confessed how freaked out I was about this. Rob was the first person that I told about anything I was going through – and he was SO COOL about it. Rob eased my nerves with stories about his friends that also have gluten issues and even offered tips on what I can and can’t eat. I honestly didn’t know what gluten really was at this point – so it was great to have someone start me out with some good steps. I cannot tell you how amazing it was to hear Rob say, “it’s not that big of a deal! You can totally handle this!”

Rob taught me that it’s okay to be open about my illness with others. He even brought me gluten-free treats! It is not your fault if you have a disease or allergy – and nearly everyone will be supportive and understanding if you tell them. I would also argue that it is in the best interest of your health to tell others; how else could they know what to avoid bringing around you or how to potentially help you?

I have had a couple of individuals tell me that they think my disease is fake (always fun to hear…) or ignore my pleas to keep the food I’m ordering clean from any gluten exposure. That’s the worst – finding out that the item I specifically ordered to be gluten free was, in fact, exposed or filled with gluten. Typically, I won’t find out until about an hour or so later – then I’m plagued with painful symptoms for the next day up to couple of days (depending on the amount that went into my system). But I can only be upset if I didn’t make every effort to inform those around me about my disease.

What I’ve learned about dealing with Health Issues at work

After a year of navigating the delicate world of being a professional with health issues, here are some key things I remind myself:

  1. Get over being ashamed: It’s not your fault that you have these challenges. It’s better to accept the facts and find ways to persevere.
  2. Be transparent but not pushy: Yes, you want people to be aware of your health issues – but we don’t want it to be one of the top 40 things that we’re always talking about. The only thing that people want to hear millions of stories about is your adorable basset hound.  🙂
  3. Need-to-know basis: Not everyone needs (or necessarily wants) to know about your personal business. It’s great to tell your boss and your close work partners, but the entire organization doesn’t need to know. This is still personal information and there could still be those that treat you differently because of their preconceived notions.
  4. Education is everything: Even though people hear and remember I have Celiac, they may not really understand what that means. Let’s be honest – I didn’t know what it meant before last November. I try to gently remind those around me (always with a smile) that I really cannot eat gluten and explain that I wouldn’t feel a tummy ache, but that I’d be stuck in bed with severe pain for at least a day. I still have to Google what might contain gluten – so it would be silly to expect everyone else to know everything about it.
  5. Accept help: This is what I need to be reminded of… often. My co-workers and friends have become the biggest advocates and supporters of me when I’ve kept quiet while everyone around me is enjoying a team meal or when we’re out and I was not as assertive with the server about how serious my disease is. I am incredibly lucky to have these wonderful people around me that are always looking out for my best interest – and I know everyone will have the same support if they just share what’s going on.

I’d love to hear if anyone else has advice on how to persevere through health issues in a professional environment! We all need to stick together and support any methods that can help make us all feel better.

Resources:

“Celiac Disease.” Celiac.org. Celiac Disease Foundation. Web. 5 Nov 2013. <http://celiac.org/celiac-disease/>.

“Celiac Disease Health Center.” WebMD. WebMD Medical Reference. Web. 5 Nov 2013. <http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease>.

“Celiac Disease.” MayoClinic.com. Mayo Clinic . Web. 5 Nov 2013. <http://www.mayoclinic.com/health/celiac-disease/DS00319>.

Celiac Sprue Association: Local support and CSA chaptershttp://www.csaceliacs.org/chapters.php

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6 comments on “Zombies with Baguettes: dealing with Celiac Disease at work
  1. Lauren E says:

    Great article Amy! And wonderful advice on dealing with the disease. It’s tough to figure out what is gluten and/or wheat-free, but you’re not alone.

  2. This is excellent advice Amy, thank you for sharing this- it’s a nice reminder that I’m not the only one dealing with this sort of thing : )

    -Paula
    http://paulalharvey.weebly.com/1/post/2013/11/lions-tigers-celiac-oh-my.html

  3. Amma says:

    Amy, thank you for this. With as much time as we spend at work, it’s important to be comfortable with our gluten-free status there. My coworkers have always been very open to learning and being careful when we share food, and I am so grateful for that.

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