Diet change is hard
Disclaimer: If you are reading this and dealing with ANY health related problems I am NOT recommending you take the same unconventional approach as I have in my battle with Crohn’s disease. Any changes you wish to make in your care plans should be done in partnership with the team of qualified healthcare providers who treat you.
How did I get started with diet change?
In the summer of 2012 my mom gave me a book called “Breaking the Vicious Cycle” by Elaine Gottschall. The book had been recommended to her by a friend after she saw success with it. When she first gave it to me I thought to myself “yeah… that will never work” and I dismissed it. But as the summer progressed so did my symptoms and I had very little choice but to give it a chance. What did I have to lose?
As I opened the book and read the forward written by Dr. Ronald Hoffman I realized there was a world of ideas that I had never been exposed to previously. He used terms that were alien to me such as enzymes, flora replacement, and intestinal toxicity. He introduced the idea that various diets had been studied for improving gut health (elimination, elemental, low residue, anti-yeast); how people’s sensitivities to foods (allergies, intolerances) wreak havoc to one’s intestinal lining; and how the microbial world in your GI can be impacted by things such as diet and antibiotics.
All of these new ideas made my head spin but I quickly realized that I had learned more about IBD in the first ten minutes of reading this book than I had in the 10 years prior. I couldn’t help but wonder if the science and theories laid out in the book could actually be true but I was just impressed that someone actually had theories besides the canned response I’d always receive from all my care teams - “It’s just genetics”.
Years later, I’m still not convinced of all of the ideas and recommendations presented in those pages but within a few weeks of starting the diet prescribed in the book I noticed a positive change in my health. After two months on the diet all of my Crohn’s symptoms had vanished - the bleeding, the diarrhea, and the pain were completely gone… gone!!
Even more surprising was I started to realize what “normal” was supposed to feel like. I had been living with IBD for so long that I had tricked myself into believing that low energy, brain fog, and all of my other non-GI related symptoms were all things that everyone felt every day - but that simply wasn’t true. Now I am much more aware of what normal feels like for me.
And while the diet wasn’t perfect it gave me hope. I stopped believing that I was powerless to control my own destiny and instead I began to embrace that there were things that I could do to manage my symptoms.
Was the diet easy?
After four months of following the diet I felt better than I had in a long time. Back then the doctors I talked with brushed off the idea that diet was the primary factor in my recovery but thankfully now diet is at least becoming more understood and talked about by providers.
This was however the first time in my life that I had ever intentionally decided to eat something other than what I wanted. Let’s just say that I was a very picky eater as a kid! The specific carbohydrate diet forced me to change everything I knew about eating - not only what I ate but also the social aspects of eating as well. You don’t really realize how much of society revolves around food until you can’t eat everything you want.
Prior to starting the diet I often found myself eating from the same food groups as Will Farrell’s character from the beloved Christmas movie Elf - complex carbs and sugar! It comes as no surprise then that for the first month on the diet I felt pretty awful. My body was in shock. I wasn’t getting the calories and nutrients that my body needed to function optimally which made me feel pretty sick. Call it what you’d like but the withdrawal I experienced was painful.
I had three options at that point in my journey:
I could find things that I enjoyed that met the criteria of the diet
I could continue to starve myself of the nutrients my body needed
Or I could succumb to the reality that I was always going to be sick
And while I hated every moment of the diet, after 10 years living with Crohn’s I hated my disease even more - so I really only had one choice! After a few weeks of struggling with different recipes approved in the diet I finally found a few that I enjoyed (some which I still cook today).
The diet changes paid off! After four months of following a very strict specific carbohydrate diet I went in remission for a year! (The longest I had been in remission prior was only about two months)
Problem solved.. right?
But, with so much success I decided to push my luck a bit - I resumed my previous eating habits AND tapered off of all of my medicines (without my doctor’s approval -which was not a great idea). After about 8 months of resuming a normal diet my symptoms came back full force.
In the four years that followed I found myself in a cycle where I’d get on the diet for a few months, feel better, and come off the diet. I’d feel great for a few months and then start to get sick again - the cycle would repeat. On one hand, I knew how awful I felt when I was off the diet but at the same time I knew I wasn’t enjoying life to its fullest when I was on the diet. I wanted to be both healthy AND to eat everything I enjoyed!
I didn’t want to commit to making life long diet changes because it felt too hard to stick with the diet. I wasn’t getting enough calories on the diet and as time went on some of the foods recommended on the diet didn’t seem to work as well the more I ate them. I knew something within the specific carbohydrate diet was working for me but I didn’t understand why. I remember thinking, “if only I could actually pinpoint the root causes for my symptoms”.
By the fourth year I was not experiencing the same success I had initially on SCD (I was still eating some of my trigger foods and didn’t know it!). As I started digging into diet and nutrition further I tried other diets that have been recommended to help with Crohn’s (i.e. FODMAP, gluten free, Paleo, keto, etc.). I tried a few juice fasts and jumped on the bone broth bandwagon. For years I had already been experimenting with various supplements, probiotics, enzymes, etc. However while they all potentially helped improve my health some I still had mixed results. There had to be something I still wasn’t understanding fully.
One thing these prescriptive diets generally have in common is they restricted me from eating the most frequent allergens (and the foods that I ate most often). It helped - it gave my body a rest from the things it couldn’t tolerate any longer. I wouldn’t be where I am today without these prescriptive diet plans and the lessons I’ve learned through them. However, I was beginning to realize that everyone’s triggers are different and one prescribed diet plan can’t solve for that.
It seemed as if I would never be able to find the one true prescriptive diet plan that worked for me but I was determined to understand what specifically about these diets worked for me and what didn’t.
This is when elimination diet and food journaling became an every day part of life for me. Since I’ve started following this process I’ve been able to add back in some of the foods that I was restricted from on these prescriptive diets.
Update: September 2023
Honestly looking back on it, these four years of diet modification might have been harder than the previous 10 before it. You give up a lot in order to change your lifestyle. I'm incredibly thankful I took this path in my journey but in the moment it was hard. I talk with people all the time who are inspired by my story but who aren't in a place of desperation to change their life - and that's ok - it's a journey. But it's like working out in the gym, no one wants to get up and do it at first (even after years of doing it, it is still a challenge to get out of bed - ha!) but when you start seeing your body changing and you start seeing your health changing... when everyone else has given you very little hope... now that is when things get exciting!! Don't give up!
Original note:
With the exception of a two month period following my hospitalization in 2018 I never got back on medication. I was able to manage my disease through diet changes alone but I obviously wasn't always successful.
While I tapered off my medication without my provider's blessing I kept him informed of my progress through regular checkups. I still think he has been a bit shocked by both my successes and failures through this journey. He has seen me be very successful for many years now but also seen me in my moments of helplessness. I hope one day that he, along with other GI providers, fully accept and understand the importance of diet changes in the lives of IBD patients.
