When I was first struggling with my autoimmune diseases (Crohn’s & Ankylosing Spondylitis), I was desperate for answers. I also wasn’t receiving much help from doctors at that point and was willing to do anything I could on my end to get better. So I turned to books, I turned to the internet, and I found an entire world of anecdotal stories of people who “cured their autoimmune disease” and all sorts of information about how food and diet supplements could fix you in a matter of months. And I tried it all.
Although there is a good deal of evidence that severe prolonged stress and childhood trauma cause autoimmune disease, it feels like no one wants to talk about it. I think people instead want to focus on diet because it feels like an easier thing to control. All you have to do is learn how to cook differently or order a bunch of supplements online. That feels like an easier thing to do than face a life that is flat-out not working for you. Also, trauma was in the past. It may have happened 20 years ago or more. It feels like it’s time for a fresh and simple makeover; something that you can feel good about and talk with your coworkers about in the lunchroom. Diet feels like a more tangible answer. After all, you are what you eat.
So let’s talk about these diets, because I’ve tried all of them. I gave all of them a fair try, sticking to them religiously for months at a time with absolutely no difference seen whatsoever. I went gluten free, I did the Dr. Fuhrman diet, Anti-inflammatory diet, Dr. Brooke Goldner diet, low fiber diet, the Fiber Fueled diet, vegan paleo, probiotics, prebiotics, bland foods, and low FODMAP. I feel like I’m missing a few more I tried, but you get the gist of it. For the record, I am vegan and have been for 20 years now. That’s not something that is going to change and has nothing to do with my autoimmune disease. I feel like it works for me.
Do I think it’s important to be a healthy weight and avoid processed foods? Of course I do! But some weird diet where you give up beans or don’t eat specific types of starches is not going to cure your autoimmune disease. I too was looking for a magic bullet, but it’s just not there. And for God’s sake, do not buy a bunch of supplements unless your doctor specifically asks you too! People make big money endorsing supplements. Like ridiculous amounts of money. Have you ever noticed they recommend a whole long list of supplements to cure your Crohn’s or whatever? There’s a reason for that. Typically these supplements are $50 a bottle or more and do absolutely nothing. I was an idiot and spent the money and dutifully took the pills everyday (usually they tell you to take them 3x a day) and got zero benefit. I didn’t even get a placebo effect!
People want to blame you for your autoimmune disease because no one wants to believe that an otherwise healthy young person can suddenly get so sick and debilitated. I think another issue is that because autoimmune disease is an invisible disease, people are prone to think of it like hypochondria. You must want to be sick! If you didn’t want to be sick, you would stop eating lectins! It’s easier than facing the very scary truth that a person’s health can turn on a dime, whether they deserve it or not. Friends and family and spouses don’t know how to deal with something that unfair.
Like I said, I tried it all, all the internet advice, all the books, and none of it worked even a little. Here’s what did work: I switched my local specialist to a specialist at a University Health System. An example of this would be MGH in Massachusetts or UVA Health in Virginia. These are doctors that specialize specifically in your autoimmune disease. All they see is autoimmune disease day in and day out. They are not afraid to write a referral for testing, a new medication that actually works, or whatever you may need. Having a good doctor made a world of difference for me.
I then got on a medication that actually worked. Remicade worked some, but switching to Humira made me feel like a normal person again. This is not an advertisement for Humira. Work with your specialist and find a medication that really works for you. Don’t accept “kinda works”. You deserve to be healthy again!
Lastly, and this was probably the biggest thing I did, I addressed my stress and redesigned my whole life. Do you have frenemies? Do you have a toxic demanding job? Do you have a dysfunctional family? That’s what you need to address, not if you’re eating too many beans or gluten. I know that it’s very hard to even start to address those issue if you are feeling so sick. I get it. How do you find the energy to do that if you are in so much pain?
I finally just had to put myself first. I had a serious discussion with my husband. I wasn’t going to allow anyone to lean on me anymore. It sounds selfish, but oh well. It was my turn to come first now. The other option is your going to do what? Have surgery after surgery? That’s not an option for me and it shouldn’t be an option for anyone who actually loves me. It sounds extreme, but this is an extreme disease. I had to face reality, and thinking that supplements or some oddly specific diet was going to fix me was just me avoiding a painful reality.
Reading this blog post is not going to fix everything. Reading some other blog post after this is not going to fix everything. Deep down you know what you need to do. You need to find a good doctor and get on a powerful medication. You also need to take a serious look at your life and how it is or isn’t working for you. What you need to do in that regards, only you can say. But I think you do know what needs to change.
More than anything, autoimmune disease is a wake up call. Is the wake up call that you need to change your diet? Probably not unless you your particular autoimmune disease is diabetes or celiac. Ask yourself, what are you really being called to do? What are you really being called to change? What’s in the way, is the way. The only way out is through.