Things I Wish Someone Had Told Me After My Diagnosis

Image by Kira auf der Heide via Unsplash

I was diagnosed with celiac disease 8 months ago. Here is what I wish someone had told me.

  1. Prepare yourself. You are going to go through the stages of grief, and it won’t be pretty sometimes. You will feel lost and angry, outrageously hungry, and mad. It’s like PMS + hangry. Expect to be emotional.
  2. I suggest you stop what you are doing right and go buy some candy bars or whatever easy treat you like. Snickers worked great for me. My worst was standing in a supermarket crying because I didn’t know what to eat and I was so hungry. After that, I kept a Snickers bar on me at all times and made it through without another breakdown (mostly).
  3. Next, think about the food you will eat. Ignore all the GF potions right now. Your brain and taste buds still remember what pizza and toast taste like. The GF sucks in comparison. Stay away from all that for a few weeks or months and it will taste fantastic when you add it back in. Besides, you may find new favorites, like Thai curry.
  4. Buy all new items for your cooking and store them separately. I recommend an instant pot, a blender, and an electric grill (aka George Foreman). You may want these appliances when you travel.
  5. You will need to learn to pack food. When you are one out of a family of five, you may not get to go to places that are safe for you. Don’t risk it. Pack your food instead.
  6. To pack your food well and not feel like an idiot at the restaurant, buy nice storage containers (stainless steel are nice) and think cheese plates, sushi, charcuterie… fancy things… and hey, you aren’t buying an entrée so why not spend your money on better food for yourself (I have a family of five too.. three teenagers… packing my food is a fun way to get some of my favorite treats, like stinky cheese).
  7. Most of the places I’ve found to be the most careful are more expensive. Talk to the chef, always. Waitstaff doesn’t really know what happens in the kitchen.
  8. Know that in addition to avoiding grains, you cannot have soy sauce, blue cheese, anything that says “natural flavors”… and avoid shared fryers.
  9. Don’t be surprised if you actually have some other dietary issues going on. Lactose intolerance is common but so is an intolerance to oats or corn. Going as grain-free as possible will help you feel better sooner. You can try adding them back in later.
  10. Finally, celiac is an autoimmune disorder. This means you may get other autoimmune disorders. They like to travel in packs. So, get yourself tested regularly and pay attention to your body. Amongst others, I developed Reynauds… my hands just exploded in a bunch of blue dots when I was out on a cold day. Weird, not fatal, but be aware.

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