Going Gluten Free, Part 4: Courage, Chronic Conditions, and a Conclusion I Could Live With

This is Part 4. Read Part 1 here; Part 2 here; and Part 3 here.

Dear Joey,

After I left the new gastroenterologist’s office that day, I was a bit disappointed. I wished the doctor would have urged me to go through the rigamarole of testing for Celiac Disease again because deep down, I sort of wanted a Celiac diagnosis. I know that is probably an awful thing to say and I am sure I’ll get reamed because of it (because who would actually want to be diagnosed with such a terrible thing?), but the truth is this: in my mind, a positive diagnosis for Celiac Disease would connect all the dots in my disjointed journey toward that point and prove once and for all I was not crazy. It would dispel doubt in my own mind and disbelief in the minds of others. Without the diagnosis, I felt that I was no closer to getting to the bottom of what was actually happening inside my body.

And so, I set my sights on that dreaded colonoscopy and braced myself for what it might reveal. I was desperate enough for answers that even the worst case scenario seemed preferable than to continue living in constant pain and anxiety. Plus, we wanted another baby, but putting myself through what would be another difficult pregnancy without knowing for sure nothing more serious was wrong with me was completely out of the question. When we checked in at the hospital that day, I was ready. Scared, but ready. The nurses kept asking what I was doing there–I was too young for such a procedure. Their sweet smiles encouraged me, and their kindness held the promise that whatever news met me on the other side of the procedure, I could face it because these people were on my side. You kissed me goodbye and sent me on my way, flashing me your most handsome, confident smile, making me feel safe in spite of things. In the procedure room, I laid on the table and let the anesthesia do its work, and I rested better than I had in over two years.

Summer 2014, not long after I got serious about going gluten free

After it was all over, the doctor sent us home with a smile that assured us he didn’t find any other cause for concern. My chronic condition was still very much active, but we left the hospital that day with confidence my body would heal over time if I followed his advice: to completely remove gluten from my diet. I had already done so, but I was even more hopeful that going gluten free would eventually turn things around for me.

You supported me like a champ. I purged the pantry and scoured labels and educated myself about what it means to really live gluten free. I learned slowly, and I spent many frustrated months blowing our grocery budget on much trial and error in the kitchen, and you politely ate helping after mediocre helping of my experiments, praising my efforts along the way. Little by little, I built up a new arsenal of gluten free ingredients and know-how, starting from scratch to teach myself how to cook all over again. Slowly, my confidence in the kitchen came back, and my body started to heal.

Not eating gluten is one thing and learning how to live gluten free is another. To give up gluten means to choose to not eat foods that contain the stuff (wheat and all wheat varieties and derivatives, barley, rye, and oats that have been contaminated by wheat–just to name just a few). In our American way of life, this isn’t so hard anymore because the market is flooded with products touted as being gluten free, and so all a person really has to do is stock their kitchen with gluten free foods and products and just eat those, right? Well, sort of.

Summer 2016, two years after removing all gluten from my diet

For me, giving up gluten meant more than just swapping out whole wheat bread for its gluten free counterpart. For me, saying no to gluten also meant accepting the hard reality that gluten was responsible for my misery even though I couldn’t prove it and the doctors couldn’t confirm it, exactly. I had to say yes to believing there could be healing at the end of this long, twisted journey, and that healing would come by simply removing gluten from my diet. And I had to start believing the truth about my body enough to stand up for myself in the face of criticism or disbelief. Non-Celiac Gluten Sensitivity (which is what I appear to have) is a condition that is not well understood and often met with a bit of eye rolling and doubt.

I understand that attitude. I had a hard time accepting that gluten could be the reason for why I had been sick for so long, too. But on this side of things, well over two years after getting the stuff out of my life, I get it. Gluten had been making me sick for far longer than the two years it had been since abdominal pains interrupted my life and sent me on a journey to figure out why. On this side of Gluten Freedom, I’m not lactose intolerant anymore. My migraines are gone. My joints don’t ache either, for that matter. The searing pain in my abdomen right around the place where my appendix sits doesn’t nag me during the day or flare up at midnight. I don’t lose sleep worrying about whether or not the doctors have missed something important. I’m not plagued with anxiety like I used to be, thank God. I finally feel healthy.


Thank you for being patient with me as I walked this hard road, and thank you for being supportive of me and showing you believe my very strange and not-well-understood condition by bringing me gluten free chocolate cupcakes once in awhile. You have no idea how deeply that makes my heart feel secure with you. I know it’s just a cupcake, but it’s really so much more than that to me. After all this pain and confusion, that seemingly small gesture tells me you hear me, you believe me, and you’re with me in sickness and in health.

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