The Crazy Confusing World of Autoimmune Disease
We were thrust into the world of autoimmune disease in early February when one of our children was diagnosed with Lupus. It came out of nowhere. Four months ago this child was active and energetic and seldom on any medication at all. Now, we are looking at steroids, immunosuppressants, specialists and regular lab work.
Any sign of fatigue or headache and I wonder if it’s a newflare up. When the doctor gave us the news, I jumped into the internet with everything I had to learn the “lay of the land” as far as Lupus disease complications, treatment options, protocol, and why in the world this struck my child.
I have been a holistic living advocate since 1996 and more than most moms in a similar situation, I knew my way around the health research. I read until my eyes were bleary. One resource says, “Do THIS”, another says that there is nothing you can do but cross your fingers and hope that the drugs will work. Another expert says, “No, do THAT!” Food that is healthy is considered off-limits for people with autoimmune disease. Even thinking about an entirely new way of eating, that may make no difference at all, is overwhelming. What if the diet really does change the course of the disease? What if it is a waste of time? Every day I was sharing what I was reading with my husband until he said, “That’s enough research!” It’s confusing, frustrating and because so much is at stake, it’s emotionally draining as well.
We knew that we would have to change her diet. We knew we would have to increase her supplements. We also knew that she would have to take drugs with terrifying side effects. Clearly it would be fairly simple given my background to put together a plan for our child.
There are two distinct worldviews when it comes to autoimmune disease and neither one of them have anything to say to the other.
In the medical/allopathic world, there is no cure, only symptom management with pharmaceuticals, and the hope that the drugs used don’t create further damage themselves. New research focuses on drug therapies, stem cell therapy, and a type injection similar to allergy shots.
In the holistic world, there is the belief, bolstered by numerous case studies, that with appropriate dietary changes and supplementation, autoimmune diseases, even Lupus, can be put into long lasting remission, seemingly “cured”. My experience confirmed the later.
When I asked our child’s rheumatologist about supplements, he agreed that extra calcium and vitamin D would be helpful, and maybe fish oil. But basically, he didn’t expect much in that area. He told me to expect the disease to progress.
I told my child that our job was to defy the diagnosis.
Why is there so much confusion about how to deal with Lupus and other autoimmune diseases?
The difficulty in addressing health challenges is that we want to isolate it to the “the one thing we have to really do”.
In the holistic world, practitioners are often relying on case studies, and the medical world relies on clinical studies. The study protocols for nutritional approaches do not always work for medical studies. According to a recent article in the Washington Post, most nutritional studies are small due to low funding and rely on meta-analysis. Despite this, nutritional research is 20 years ahead of clinical practice. Scientific studies are really a very public discussion in the scientific world. One cannot take a single study as absolutely definitive. Studies done on rats or mice do not often translate into human health outcomes. That adds to the confusion. It takes years, sometimes decades, before the scientific, medical, or holistic community comes to a decision about a certain aspect of health.
My philosophy is this, if it doesn’t hurt, and it may help, then do it so long as it is within basic nutritional parameters. For example, adding more vitamin C complex isn’t going to hurt, and it may help. Extreme dietary changes may help, but they are very difficult and in my daughter’s situation, there doesn’t seem to be any real food issues. (Except that she’d like to eat more ice cream ? )
The difficulty in addressing health challenges is that we want to isolate it to the “the one thing we have to really do”. Our bodies don’t work like that. My husband asked me why our child was feeling better. Was it the dietary changes, the medicine, or the supplement regimen? “All three”, I told him.
I’m blessed to have the help from my friends and colleagues in my company. They are very generous in sharing their knowledge , personal experience, and encouragement.
My child is in the Lord’s hands. We never ever thought we would be on a journey like this one. We did the best defensive driving we could (using good nutrition and Shaklee), and yet we were blindsided by a “drunk driver”. In our case, our child was protected from the worst precisely because we wear our “wellness seat belts”.
Mom- follow your instincts with your children. I firmly believe that mom’s intuition far outweighs any other consideration.