When diet is wrong, medicine is of no use.
When diet is correct, medicine is of no need.
I can time the moment that Caroline started getting better to the moment we decided to experiment with food as medicine. We had nothing to lose. Despite months of trying the traditional medicine route, with anti-inflammatories, steroids, methotrexate and biologics, she continued to be heartbreakingly sick from her arthritis. Her joints were inflamed; she was in pain, exhausted and withdrawn. She hadn’t grown in over a year and continued to lose weight. So we asked Caroline if she was game to try an elimination diet. Turns out, she was willing do anything to feel better.
We didn’t come to this decision lightly. But it kept niggling at my mind that autoimmune diseases have an environmental trigger. Shouldn’t we be looking for that if we wanted to help her? I kept thinking of the celiac model, where twin studies show development is 25% genetic and 75% environmental. Her genes are what they are; I can’t change that. But what about the environmental trigger? If gluten could trigger her autoimmunity, it wasn’t a big leap to think another food could, too.
An elimination diet made sense to the scientific side of me. The concept is that you take away all inflammatory foods, giving the gut some time to heal and allowing autoimmunity to abate. Then you add back suspected food groups one by one, monitoring to see which cause symptoms. Already off gluten because of her celiac disease, we cut out all dairy, eggs, grains, nuts, nightshades and legumes from Caroline’s diet. Sugar and processed foods were ditched as well. Now left with only “low inflammation” foods, Caroline ate meat, fish, some vegetables and some fruits. Changing the way we eat was no easy undertaking, but we gave it our best shot. We sat down together to eat high quality, whole foods prepared at home. We crossed our fingers that maybe this would give us some answers.
The plan was to do this “healing” portion of the elimination diet for 6 weeks, but after 3 weeks or so, Caroline announced she was HUNGRY. I could have cried with relief. For the first time in months, she was feeling better, eating full meals and asking for snacks in between. But, best of all, her arthritis was gone. In exchange for her minimalist diet, she gained energy and went back to being a joyful, joking kid. We were on to something.
The next step for our now-hungry girl was to try to re-introduce foods one-by-one to figure out which were the troublemakers. We wanted to start with the least likely culprits first. I had a hunch that nightshades were fine, given she carried the genes of her potato-loving English/Irish and Russian/Polish ancestors. So we started by feeding her LOTS of potatoes, tomatoes, eggplant and peppers for two weeks. We watched her like a hawk, but she continued chugging along happily without any return of symptoms. Every 2-3 weeks, we’d add something else back in her diet, moving on to legumes, eggs, nuts, grains and even sugar. Finally, only dairy remained. She was thrilled when we added back ice cream, but the next day a psoriatic-type rash appeared by her eye and she told us she felt exhausted. So we took away dairy until she was back to normal. Then we tried again. And again. Five times we tried to re-introduce dairy and five times she had symptoms. We were convinced; for Caroline, dairy kick-started a systemic autoimmune reaction.
An elimination diet is a big undertaking. The whole process took about four months, which our family refers to as The Challenging Times. But trying an elimination diet was worth every sacrifice, as now we know what to feed Caroline to keep her healthy. Caroline eats a gluten-free and dairy-free diet. Making giant leaps with what little researchers know about the microbiome and autoimmunity, we aim for an overall dietary balance of half fruits and veggies, a quarter starch and a quarter protein at every meal. We try to eat the highest quality animal and plant foods and everything we eat is made at home from whole food ingredients. We limit refined sugar and avoid anything processed, anything that may contain pesticides and anything stored in plastics.
I learned that, for Caroline, food is medicine. The change in her diet and the ability to identify what triggers her autoimmunity has changed her whole disease course. Time will tell if this diet is just playing a part in controlling her disease or if it’s a total cure; we’re weaning her off her biologic and keeping our fingers crossed. Ours is just one story amongst the millions who have autoimmune disease, the countless who are experimenting with food as medicine and the uncounted who have found an answer there. I suspect that the etiology of autoimmune diseases is inherently individual and complex – while Caroline’s might be triggered by gluten and dairy, someone else’s may be triggered by red dye #129 and yet another’s by a combination of viral infections, pesticide exposure and dry cleaning solvents. We won’t know until we look. The elimination diet is a tool to help identify potential food triggers in autoimmune disease; hopefully, medical doctors will one day incorporate this approach into their practice to help their patients root out their individual environmental triggers.
* If you are thinking about trying an elimination diet to identify potential food triggers in autoimmune disease, please consider discussing this with your doctor and a nutritionist first. Although the majority of doctors haven’t learned about elimination diets in their training, keep them fully informed and your partner in your care. Who knows… you may even start a dialogue that will educate them about this option for other patients.