My Truth About Celiac Disease and Food Restriction

Food restriction is a sensitive and vulnerable topic to talk, write or even think about. If I’m being honest with you all, I’ve been wanting to share my experience with food restriction for awhile now. In fact, I wrote this blog post over a year ago and it’s just been sitting in my drafts. I think I kept avoiding publishing my truth about celiac disease and food restriction because I was still in the thick of working through it and needed more time before I shared this part of my journey.

Celiac disease and food restriction

Before my celiac disease diagnosis (you can read my full story here), I definitely experienced diet culture the way most females do in our society. I felt the pressure to look and eat a certain way. I’ve tried diets here and there and focused on trying to eat a healthy diet.

However, it wasn’t until after my diagnosis that I truly fell into the spiral of disordered eating. At first it started with gluten, as it should have since this is needed to manage celiac disease. After removing gluten from my diet, I realized how much food can impact how we feel. As a result, I think there was an unconscious connection created in my mind that restriction was healthy and healing since that was the case with gluten.

My quest to feel better began…

After being gluten free for a few months and not feeling “back to normal”, I decided to do more research to see what might be causing my lingering symptoms. That’s when I stumbled upon the world of gut health and gut healing. It made sense to me that my gut needed healing due to the damage celiac disease caused. I truly thought I found the golden ticket and would return to feeling back to myself in a matter of time.

This is when I started to follow any diet that promised to heal my gut and make me feel better. Some of the diets I have tried include plant based, vegan, paleo, the autoimmune protocol diet, Whole 30, low FODMAP and biphasic. I desperately wanted to feel better and clung to the idea that food would be the solution. Everything I read and everyone I followed on social media was telling me food is medicine so I thought I just needed to keep eliminating foods to feel better. Yet with each diet, I would only feel better for a limited amount of time before my symptoms would reappear. So onto the next diet that promised gut health I would go.

 A note about gut health

Before I go further with my story, I want to pause here and say that there is nothing wrong with wanting to heal your gut. I know many of the diets I mentioned above have worked for others and I also understand the benefits they can offer. I am not writing this post to bash healing your gut or diets in general.

Food restriction in the name of healing

So if I’m not bashing gut health, what exactly am I saying? I don’t think my quest to heal my gut was wrong. I think there are parts of this journey that truly benefited me and my health. But looking back, I can see how disordered my relationship and mindset became around food…in the name of healing my gut.

If I read anywhere that a certain food could cause inflammation in the body, I would automatically label it as bad and completely take it out of my diet. The lists of foods I was avoiding slowly became longer and longer. The more I restricted my food, the more unhealthy my mindset around food became.

I no longer viewed food as nourishment and fuel for my body. I viewed it as something to be feared. As the thing that was causing my body to feel ill. There was so much fear and anxiety around food. All foods, not just gluten. I remember spending hours and hours trying to come up with a menu/grocery list for the week because every recipe I found on Pinterest had at least one ingredient that I eliminated from my diet. At this point, I was not aware of my mindset around food because it was masked by this idea of healing my gut, eating healthy and feeling better.

Gut health is important but at what cost

I might be coming across like eating healthy and focusing on one’s health isn’t important. That’s not the case. I think it is very important to take care of the one body we get in this lifetime. But I believe we are missing a big piece to this conversation.

Health doesn’t just include what we eat. Health also includes our mindset and overall stress level. I thought I could heal my gut by obsessing over what I ate. I thought everyone else could tell me how to heal my body. As a result, I totally gave up internal control, stopped listening to my body’s cues and relied on others to tell me what to eat. I wasn’t enjoying food. I wasn’t relaxed when I ate. Every sensation in my body was being overanalyzed as I tried to link it to a food I recently ate. I was constantly going to the internet to try to figure out “what was wrong with me” and how to fix it.

In other words, I was stressed, anxious and fearful. Yet I expected my body to act as if it was healthy and thriving. It doesn’t work that way. Looking back, I was in fact creating so much more stress on my body due to my mindset and relationship around food…which was contributing to the symptoms I was still experiencing.

I was trying to heal my gut but I was actually doing the opposite. Instead, I was disconnecting with my gut by not truly listening to myself and what my body needed. I was so focused on food yet I wasn’t nourishing my body or mind.

Food is just one piece of the puzzle

Food/nutrition is only one dimension of our health. At the time I was going through all of this, I thought nutrition was the only thing I needed to focus on in order to feel well. But the reality was that I was ignoring all the other areas of my wellness. Some of which include things like emotional well-being, mental health, spirituality, mindset, healing past hurt and trauma, what is consumed outside of food on a daily basis (social media, news, tv shows, etc.), communicating our needs, setting boundaries, self-care, exercise/moving the body, how we spend our time, relationships and social connection…just to name a few.

As a licensed counselor, I’ve always seen the benefit of therapy even if nothing “big” or “bad” is happening in life. That’s how I started to recognize how unhealthy my relationship with food was. I started working with a somatic experiencing practitioner that helped me look at the mind body connection. Working on myself as a whole, allowed me to realize how much I was restricting myself. It allowed me to see that I was obsessing over every food ingredient as a way to gain control over my body. Celiac disease created a fear within me that there are certain things in life that I cannot control. I felt like I lost control over my body when I was experiencing all the symptoms of celiac disease and obsessing over every piece of food I put in my body gave me back a sense of control.

The thing about control is that it really never frees us. Instead of being “in control of my body” like I longed for, I lost all connection with my body. I wasn’t listening to what my body was trying to tell me or my own intuition or my own wants and needs. Looking back, my heart hurts for where I was at this time in my life. But I also know I wouldn’t have learned many important lessons if I didn’t go through it.

My food restriction takeaways

Takeaway #1: Gut health is an Industry

This part might upset or trigger some people but gut health has become such a trend in our society. As a result, it has become an industry. Like any industry, it wants to make money and it often preys on those who feel sick. Those who are desperate for answers and to feel better.

I have come to see the gut health movement as a part of diet culture. So much of the same message and mentality exist in both spaces. This is not to say that everyone who promotes gut health supports diet culture. That’s not true at all. Rather, I think we need to use discernment when it comes to this area and who we put our trust in.

Takeaway #2: Whole body wellness

The body is made up of parts but it functions as a whole. Therefore, we need to look at all the parts in order to truly heal. What do I mean by this? It’s not just about one thing. Yes, I have celiac disease and the main focus of managing it is on nutrition. However, this isn’t all there is to it.

Eating gluten free and being diagnosed with a disease has much more of an impact than on just what one eats. It changes how we relate and interact with the world around us. I learned that in order to truly heal and feel better, I had to start focusing on my whole body.

This meant looking at the emotions behind my diagnosis, my mindset around my life after my diagnosis, the impact it had on my social connections and so much more. I had to look at, sit with and process it all because it all matters. It’s not just about food, it’s about wellness as a whole. And if my mindset with food is off, so is my overall well-being.

How I’ve worked on healing my relationship with food

Over the past year, I have shifted from healing my gut to healing from the inside out. For me personally, the more I focused on healing the internal stuff, the more my physical symptoms improved. I am reluctant to share what has helped me focus on my full body wellness as I don’t want to be just another person on the internet telling you what to do to heal. So, please take this information as my personal experience and what has worked for me. It may not work for you and that’s okay. If you take anything from this blog post, I hope it’s this…you know yourself the best, not me or the next person on the internet. Truly listen to yourself and what your body needs.

Here are some things that have helped me on my journey…

  • Therapy/somatic work
  • Yoga and yoga nidra
  • Meditation
  • Journaling
  • Prioritizing rest
  • Mindfulness
  • Daily movement
  • Spending time in nature
  • Tuning into my body and tuning out everyone else
  • Setting boundaries
  • Learning how to advocate for myself

So where am I now?

I can’t just share my truth with celiac disease and food restriction story without letting you know where I am now. Because that’s not the end. It was just the beginning. I am still a work in progress and still find myself slipping back into diet culture mindset. I think unlearning diet culture is something that takes time and practice. However, I can say that I have a much better relationship with food.

I am eating foods that I haven’t eaten in years. I am still dealing with a few physical symptoms but overall I am feeling the best I have since my celiac diagnosis. In addition, I feel like I have freedom around food again. I no longer fear certain foods just because they are labeled as bad by someone else. Instead, I am listening to my body and trusting my body. I am enjoying my food and not feeling anxious when eating. When I eat with others, I am no longer feeling left out and isolated.

I don’t believe that anyone is truly ever “healed”. That’s just another all or nothing mindset that can become unhealthy. So, that’s not my goal. My goal is to accept and love myself exactly where I am while continuously trying to be the best version of me. I am thankful for this piece of my journey because it taught me so many lessons and lead me to where I am today.

One last thing about my truth with celiac disease and food restriction…

I felt the need to share my truth with celiac disease and food restriction for two reasons. First, I want to acknowledge that I often label my recipes by diet (gluten free, dairy free, paleo, etc.). However, this is not to push diet culture or the idea that anyone should be following a certain diet but rather to let my readers easily find recipes that meet their personal dietary needs.

Second, I share my story because I can only assume that I am not the only one out there with this experience. In our society, diet culture has targeted the general population for many years. More recently, this idea of gut health has become a part of the wellness industry and those with autoimmune diseases are often a target.

There can be such a fine line between taking care of your health and doing so in an unhealthy manner and the messages from diet culture can make it very easy to cross this line. So I share my store because I know how tough it can be at times and I want others to know that they aren’t alone. If you have experienced an unhealthy mindset around food or are currently trying to figure out this food restriction maze, know that you aren’t alone in this. You can always reach out and chat, I love connecting with you all.

-Kelsey

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