My friend Sara recently has learned she has Celiac disease, an autoimmune condition in which the body responds negatively to gluten–a substance found in wheat, rye, oats and barley. May is Celiac Disease Awareness Month. Celiac disease affects 1 in 133 Americans, and the treatment–avoiding gluten–sounds simpler than it is. Today, I’m happy to have Sara sharing her experiences so far.

Tell us a bit about yourself. What you do for work, like to do for fun, if you have any pets, about your family… Anything goes.

I’m Sara.  I am a mom, caregiver + patient advocate, writer, a lover of photography and real estate.  I have a blended family with four kids, two boys and two girls, an amazing husband and a five-year-old Australian Shepherd.  Both boys have Type 1 Diabetes and one of those boys’ has Crohn’s.

Tell us about what your experience with celiac disease has looked like–when were you diagnosed, what led you to diagnosis? What did the before/after diagnosis look like?

I was diagnosed in February 2017 after months, maybe years, with celiac.  Looking back, the symptoms started when I was pregnant with my youngest, Link, in 2013/2014. When I would eat, I would be full within minutes and then be starving an hour later.  I was eating for two and I should have been able to eat more while pregnant than when I wasn’t pregnant.  Finally, after years of dealing with not being able to eat a full meal properly, I thought that MAYBE something was wrong.

In the Fall of 2016, I started to have headaches daily and stomach pain after every meal and would have my stomach talk back to me with an attitude similar to “What the heck are you doing to me?  I don’t want this food.” I cut out soda cold turkey thinking that my body was mad at me for drinking all that sugar and switching to diet soda was not an option for me as I get headaches with artificial sweeteners.  That did not work.  I did a systematic restriction diet and found out it was wheat items that caused me issues.  I felt so much better without the tired hangover feeling that I was living with daily.  I spoke to my doctor and they ran a bunch of tests, including making me go back on wheat again for a while.

Since my diagnosis, we have been slowly switching everything in the house to be gluten free.  My husband is supportive of the change although it makes our busy nights more difficult because we can’t eat frozen meals as much anymore, because wheat and wheat products are in EVERYTHING! The worst part is that I can’t eat some of my favourite junk food items like black licorice or sugar cones with ice cream.  I am better off without that junk food but boy, do I ever miss it. The best part is that I am eating the way that I should have been all along – minus wheat – fruits and veggies are my new junk food and we are eating a lot more meat.  I have found a bunch of gluten free recipes online and have made more things from scratch which means fewer preservatives that my kids are eating.  I don’t know how long I have actually had this condition but it has made me healthier.

What do you wish more people understood about celiac disease?

I wish that people understood that [celiac] is a disease and that we didn’t choose to give it to ourselves. A lot of people always seem to think we did SOMETHING to cause whatever ailment that we have.  You can’t prevent it, it is an autoimmune disease.

“Gluten free” is in fashion, so to speak, for non-medical reasons. Does that, in your opinion, make it easier or harder to manage your diet with medical need to avoid gluten due to celiac?

Why would anyone want to eat gluten free by choice? With that being said, who (“normal” people) would want to willingly pay more for food that our bodies (celiac patients) can digest properly? Personally, I am still “learning the ropes” and think that eating gluten free is still very difficult and expensive. Before I was diagnosed I didn’t know that a lot of restaurants had a gluten free menu they do, but you have to ask for it and I have noticed that some are still reluctant to give it to you.

Has connecting online been a part of your celiac disease journey? Why or why not–and if so, what has that looked like?

Connecting online has not been a part of my journey so far.  I am still relatively new to this and I am able to find recipes to try online.  My diagnosis wasn’t devastating it was a relief because I finally knew what was wrong.  I am online, however with all my kids’ stuff.

Final thoughts, or anything you’d like to add?

Thanks for having me! 🙂

Thanks, Sara, for sharing your story with us!

Sara Kearley is a mom, blogger, speaker, photographer and Realtor from Ottawa, Canada. To connect with Sara, you can visit her (new!) blog, Modern Night Owl, and follow her on Twitter at @NitaCure4T1D.