By Krista Lample, MEd

I’ve been in recovery from an eating disorder for over 20 years. It’s not a daily struggle anymore and it hasn’t been for a long time. I don’t worry or think or obsess about the things that used to consume me. I’ve been tested many times with those life events and tragedies that they say can “trigger” a relapse , but it hasn’t happened. I have memories of that time in my life. I have memories of the pain, the anxiety, the isolation, the anguish and the fear. It’s as if can look down on myself from that time and feel intense compassion for that young woman, but I can’t recreate those feelings. I wouldn’t want to recreate that turmoil. It’s as if I have a different mind now.  At least this is what I thought to be true.

A few years ago, I was unexpectedly diagnosed with Celiac Disease.  I had been having some confounding health issues for the past several years and what was supposed to be ‘rule out’ turned out to be my answer.  My doctor was as shocked as I was ,but the evidence was very conclusive. Oh the irony. I was eating a beautiful gourmet pizza when I got the news via email from my Doctor. But her words sliced right through my intuitive eating mindset and activated something in me that I thought was long gone as I read her message.

“You need to stop eating gluten immediately. That is the only current treatment for this disease and the only way that your intestines will begin to heal and absorb vitamins again.  This is not an easy diet to follow and you have to be diligent because gluten is hidden in so many different things. I suggest you speak to a dietitian or nutritionist. Since you don’t have the typical gastro symptoms, you are going to be tempted to stray at times, but it needs to be a complete lifestyle change. Your body will have an autoimmune response to even the smallest amount of gluten and it is causing you damage whether you feel it or not. You need to think of gluten as poison.”

To say that I was overwhelmed is an understatement. In my mind, gluten was bread or pasta, but I quickly discovered that it was so much more.  Learning the facts is a process for sure. De-glutening my house felt like progress. I could learn how to do this. Everyone told me that its so much easier now than it used to be and I knew I was capable of learning and changing.

What had started to concern me almost immediately was my mind. It was swirling and racing with an intensity that I hadn’t felt in a long time but I recognized quickly. Good food/bad food. Safe food/unsafe food.  Irrational thoughts that I recognized as irrational, but felt powerless to fight. Only wait…was this actually irrational now? Some food isn’t safe for me right?? Wrong? I didn’t know what to do with my thoughts. I had been trained to question them …to not trust them….   It was paralyzing. Overnight, restaurants became sources of anxiety and uncertainty. I declined invitations to dine. I would tell my husband to go out without me because it was too hard to find a place that was celiac friendly. I found myself in ‘research’ mode all the time. I started developing lists of ‘safe’ restaurants because I travel so much. I found myself wanting to stay in my own home because I could control the cooking conditions and the food. I started obsessing about cross contamination. I started restricting and hiding it and was so disturbed and disappointed that it still came so easily to me. I worried about what people would think in the eating disorder field where I work. People tend to roll their eyes at those who still need ‘special diets’ as if they aren’t really recovered. I know because I had done it myself.

It wasn’t so much the prospect of living gluten-free. I could do that. The issue was how easily I seemed to slip back into a frantic, anxious, fear-based, secretive mindset. How easily I became obsessed. I was very judgmental with myself and although I was open with people about my diagnosis, I was not in any way open about my emotions surrounding the diagnosis. I wasn’t open about my fear or my questions. I channeled my mounting obsessions into creating gluten-free perfection.  I felt shame about the way I was handling this internally. I felt weak. I felt guilty for inconveniencing people and for dictating the dietary restrictions when dining with others. I felt embarrassed at having to ask so many questions about the food.

Hadn’t I washed my hands of this chaos decades earlier? And yet here I was, in the midst of my colorful reality, still seeking a black and white answer.

And then about 5-6 weeks later 2 things happened.

The first, is that I started feeling really good physically. Better than I had felt in a long time. Things that I thought were ‘my normal’ were not normal. Symptoms began to disappear. People would ask me if I felt a difference and I did. I was encouraged. As I read more about Celiac disease so many things had started to make sense to me.  I felt validated. I wasn’t a picky eater. It wasn’t all in my head. My body was trying to tell me something. Because of my eating disorder, my mind had become so suspicious of my body that I didn’t know how to listen. I blamed everything on my mind.

The second thing that happened was that when I finally started talking about how I was feeling, I realized several things.  Others didn’t judge me the way I judged myself. (That’s always the case isn’t it?) Of course, I was obsessing about food. No one faulted me for that. This was a huge forced lifestyle change and it made sense that it would take some adjustment. How was I supposed to know that there was gluten in maltodextrin and that there was maltodextrin in EVERYTHING?  How was I supposed to know that they use smoke flavor in their grilled veggies at Red Lobster and that smoke flavor often contains gluten?  And of course I was worried about contamination because I was finally feeling good and didn’t want to mess that up.  And contamination is a real issue for celiacs. Even some flour left on a spoon or using the same oil to fry French fries and breaded chicken can cause damage.

Why was I punishing myself for something I couldn’t help? Would I blame someone for having diabetes or lupus? Would I equate that with some moral failing? And as I asked myself that question in the present, I realized that I had never asked that question in the past. I didn’t choose to have an eating disorder any more than I chose to have celiac disease. My genes were pre-disposed for both and then something triggered them. And yet in my mind, the eating disorder was still equal to weakness and confusion and shame and blame. I recovered physically and took pride in leaving it behind as if I was now more enlightened and superior to what I had been back then. It was almost as if my recovery had taken the place of my disorder. I was so entrenched in it and associated particular emotions with it that I couldn’t feel them without feeling like I was failing.

What is true is that I have not relapsed. I don’t have an eating disorder again. I am not as anxious as I was when I was first diagnosed with Celiac Disease but I still get stressed out if I am stranded at an airport with no gluten free options. I am still learning to travel with snacks and flexibility. I am no longer restricting dining out. If there isn’t anything I can eat.  I can eat at home. No big deal.  And I don’t owe anyone an apology or an explanation.  I am grateful for my celiac diagnosis because of my improvement in physical health for sure but believe it or not I am also grateful to have re-hashed my eating disorder recovery. Recovery is not as fragile as you think it is.  Someone once told me that I needed to forgive myself for my eating disorder and I spent a lot of time trying to do this but I think that was wrong. You don’t need forgiveness for something you can’t help or didn’t do on purpose. Celiac disease helped me let go of shame and guilt surrounding my eating disorder that I didn’t even know was still there.