My coeliac story

You Have Celiac Disease? What you Should Do and What You Must.

“An increasing amount of Americans are dealing with Celiac Disease. Over the past several decades, Celiac diagnosis has increased 7.5% each year. What in the world is Celiac Disease? Celiac is an autoimmune disease that affects people with certain genetic predispositions that when gluten is injested, a protein found in such foods as wheat, barley, and rye damages the small intestine.

My journey began in a similar way. After getting some routine bloodwork results showing low Vitamin D levels, my doctor ordered further testing. About a month before Christmas 2018, on a cold Saturday morning my doctor called me. He told me that my results were consistent with Celiac Disease and that I should make an appointment to see a GI physician ASAP.

Once I had connected with a specialist, the instructions were clear. One month with no deviation from a regular diet, followed by a scheduled upper endoscopy to confirm the diagnosis. Just to be prepared, I ate a soft pretzel on Friday and a huge cheesesteak on Sunday with the largest, freshest hoagie role that you could imagine.

After the confirmation of my diagnosis, my nearly four year journey has taken me through careful grocery shopping, screening of restaurants, and having food on-hand in case I need to travel. Hopefully, this will help all of you as well. I bring mental flashcards when speaking to friends, family members, and coworkers. No, it’s not an allergy. I can’t eat barley, wheat, or rye. Yes, it is difficult to manage. Yes, it’s pretty unpleasant for me if I get exposed to gluten. Yes, I’m sure that you can’t imagine living with this disease.

The first necessary step is to find a good GI Physician. You’ll need one to perform the upper Endoscopy and to confirm the diagnosis. After that, you’ll need to stay closely connected so that your serologies can be monitored.

It’s probably also advisable to connect with a good nutritionalist who can guide you on dietary restrictions until you feel comfortable making food choices on your own. Grocery shopping just got harder. A lot harder. You’ll definitely need to learn to read labels.

Not only will grocery shopping take you a longer period of time, gluten free food costs more as well. It’s also a good idea to seek support. Living with celiac disease can be a lonely existence, and with the difficulty of attending events that involve food can be downright demoralizing.

If therapy doesn’t appeal to you, seek a support group. You’ll be amazed at what you can learn from the experiences of others who are also discovering a new way of living like you.

Your social life is going to change as well. You’ll want to avoid those environments where the risk of ingesting food or drink with cross-contamination is high. Videos on social media can deal almost exclusively with how to travel for leisure or business and how to properly screen restaurants for celiac safety when away from home.

Last week for a special occasion, I went out to eat dinner at a local restaurant with my family to an establishment that offered a gluten free menu. After carefully explaining my food preparation needs to the server, I left the table to use the restroom. When I returned to my table, I was greeted by a caesar salad filled with croutons and a bread sampler with gluten galore. While politely motioning for the server’s attention, I started playing the flashcards over in my head from the beginning, No, it’s not an allergy. I can’t eat barley, wheat, or rye. Yes, it is difficult to manage….

Michael Thomas Leibrandt lives and works in Abington, PA, USA.”  

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