How A Healthy Diet Helped Our Crohns

Within days of being diagnosed (Ben with moderate-severe Crohns and Isabelle with mild Crohns) we were desperate to find out any and all information about the disease, its causes, and how we could help.  After reading about all the horrific complications of the disease we were even more determined to do something, ANYTHING, to keep our children from going down that path.  Although we trusted our gastroenterologist to prescribe the best medical treatment, we weren't convinced we were getting the best nutritional advice.

In Search of an IBD Diet

At the time the kids were diagnosed, early in 2015, the only definitive nutritional guidance was to avoid foods that by trial and error (aka, the elimination diet) made symptoms worse.  Popcorn was the only food the nutritionists advised to eliminate altogether because the kernels were hard to digest.

We asked whether a gluten-free or dairy-free diet would help and were told that there was no evidence that either would help. We asked about enteral nutrition (formula) and learned that it was effective in controlling flares in some children, but but didn't seem like a viable longterm solution.  In the end we were advised to follow the FODMAP diet to reduce discomfort and alleviate symptoms.

The FODMAP diet provided a long list of foods that cause gas and were to be avoided, but doesn't address the underlying inflammatory problem.  ​

The  Specific Carbohydrate Diet™ seemed the most promising, because it purported to reduce the underlying inflammation by eliminating hard to digest sugars, lactose, and gluten.  The author, biochemist Elaine Gottschall, based the diet on the work of Dr. Haas with the goal of curing her daughter's IBD. 

The IBD Anti-Inflammatory Diet (IBD-AID), designed by a team at University of Massachusetts led by Barbara Olendzki, RD MPH LDN,  is based on the principles of the SCD diet (eliminating hard to digest sugars, lactose, and gluten), with a few key allowances that make the diet easier to follow (e.g. oats and sweet potatoes are allowed).  It also focuses on the texture of the food and provides a clear 3 stage plan to introducing rougher textures.

Committing to the IBD-AID Diet

After reading everything we could about these options, within 3 weeks of diagnosis we resolved to put the kids on the IBD-AID diet.  Doing so was a huge commitment by the entire family. Clearly, all of our family meals had to change, the way I shopped had to change, and our whole relationship with food had to change.  During that initial time period there was a real sense of loss--food no longer was a treat, no longer was a reason for a celebration, and no longer entertainment. We reduced it to its basic purpose: nourishment.  

Admittedly, this war-like approach to food was not the best approach to the new diet.  At the time I was angry at myself and angry with the processed, sugary, artificial products that I'd let into their bodies.  With a purge-mentality, I emptied every cabinet, every drawer, and the fridge of any food that didn't fit our new diet.  The bags and bags of food went immediately to the local food pantry. 

A gradual shifting of our diet would have been less upsetting to the kids, but on the other hand, the severity of the situation immediately following the diagnoses helped give us the resolve to push ahead. We might not have been able to make such important changes if we'd taken a slower approach.  Although it was tremendously difficult for the kids, we were able to implement the diet and within 3 weeks we were seeing improvements in their symptoms.  The improvements continued and within a few months their lab work showed marked reductions in their inflammatory markers, clinical remission in both kids, and endoscopic remission in Ben.

How Following the IBD-AID Diet got easier

The early success encouraged us to stick with the diet and gradually we all seemed to shed our addiction to sugars and starches.  Over time everyone felt better and sweet drinks or starch foods we used to enjoy no longer appealed to us.   The kids now regularly drink water and unsweetened tea, snack on fruit or lactose-free cheese and yogurt, and enjoy berry smoothies, oatmeal or banana pancakes for breakfast.  ​

In addition to breaking bad habits and becoming educated about the harms of certain foods, what helps us to stay on a healthy diet is finding creative ways to make eating fun again.  Whenever possible we take the extra time to make our food pretty and fun: whether it be by spiralizing veggies, serving fruit in a fancy crystal parfait glass, or making sushi rolls by hand.  In fact, one of the main reasons we started this blog was to share our ideas to help staying on a healthy diet easier.  (For more ideas see our Recipe section.)  Although  a few years later we aren't  following the IBD-AID Diet as strictly as we did that first year (the kids now eat rice and potatoes occasionally) the diet remains our guiding principle and has kept our entire family on healthy path.

Diet or Medications?

Concurrent with the IBD-AID diet, both children began taking Pentasa and Ben started a low dose of methotrexate, both conservative first-step medications.  ​It's not possible to know whether it was the diet or the medications that helped the kids. More likely it was some combination of both.  Pentasa is a maintenance therapy that isn't expected to bring about remission and methotrexate is a slow acting therapy that  isn't expected to produce results in the first 6 months.  Since we had such good results within a few weeks of taking the medications and going on the diet, we believe the diet helped immensely in the beginning and continues to work together with the medications to maintain remission.

Before starting any diet or making any changes to your medications please consult a doctor. Everyone's IBD is different and not everyone responds to the same treatments in the same way.