My Autoimmune Journey

If any of you have followed me over the past nine years, you are probably surprised to see a post like this. I never wanted my website or social media presence to be about me, but rather the message I feel called to share. However, over the past four years, I’ve had ongoing flare ups in my autoimmune disease that no longer respond to medication. This led to me diving into the research to see if there was anything that I could do with nutrition to help. What I have learned over the past six months has changed my life personally and professionally, so I wanted to share it with you.

When it all started.

When I was 21 years old, I started having episodes of angioedema on my face. Angioedema is a swelling in the lower layer of your skin that often results from an allergic reaction. I ended up in the emergency room multiple times with extensive facial swelling and hives covering my body. Eventually, I was diagnosed with chronic idiopathic urticaria (hives) and Hashimoto’s thyroiditis.  I had no symptoms of hypothyroidism, but my anti-thyroid antibodies were extremely elevated. They started me on thyroid hormone replacement, and the hives and angioedema seemed to get better, but did not go away for another six months. One day the hives just disappeared and didn’t come back.  Throughout the years, the hives came back through my pregnancies and other random times. They often show up during intense periods of stress, but not always. The doctors could never figure out what was causing the hives, but since they often correlated with my thyroid function, we expected that there was an autoimmune component to it.

My hives never responded to medications. Antihistamines helped the itchiness but did not make them go away. At one point I was taking 2-4x the recommended dose of multiple antihistamines daily without any effect. The only thing that worked was high doses of prednisone, but as soon as the prednisone was stopped, they came back with a vengeance. I had asked my doctors and looked through my nutrition resources for information on diet changes to help me, but at the time, there was really nothing available. The only thing I found was the Paleo AIP diet, which I did try for a short stint, but it was way too restrictive. I wasn’t desperate enough at that time to continue, so I wrote it off as quackery and put all my hope in medications. For twenty years, I suffered through these hive flare ups just waiting for them to go away. The shortest bout I had was one week and the longest was ten months. The longest remission was five years.

In 2019, I had a flare up of hives likely due to stress at that time. My thyroid function was also off, so my medications were adjusted and the hives once again improved, but didn’t go away.  Since many years had passed since my previous episode, my healthcare provider referred me to an immunologist, where I was prescribed monthly injections. After three months on the injections the hives went away.  One year later, a stressful event caused another flare up, so I was started on the injections right away. Except this time, they didn’t work. They actually made the hives worse and completely unbearable. Our last resort was to start an immunosuppressant drug that they give people with organ transplants. It had horrible side effects, but within two hours of taking it, my hives were gone. It was amazing to have instant relief like that. I took that medication for two months and then weaned off and the hives stayed away.  Three months later, they showed up again, so I started the immunosuppressant, but this time it didn’t make them go away.  It did help to reduce them, but I didn’t get the same relief as before.  Eventually the hives stopped, but again returned six months later.  This time, the immunosuppressant didn’t work at all.  It was my my last straw.  There was nothing else to try.  I had failed all medications. Or perhaps, they had failed me.

The turning point.

In January of this year, I had my final visit with my immunologist. The week before the appointment, I had spent countless hours in PubMed reading research on non-pharmaceutical treatments for chronic hives.  I came across multiple studies about low histamine diets and gluten’s role in autoimmune disease. You see, I had looked into diet and autoimmune disease in the past but I didn’t believe it. The traditional medical system that I was trained in did not support diet changes for autoimmune disease, despite the significant amount of evidence that is now available.

And this is where I need to apologize and admit that I was wrong. Call it pride, ignorance, or both. I was wrong.

I told my immunologist that I was going to try a gluten-free, low histamine diet for a while to see if I could figure this out naturally. I’m pretty sure he thought I was crazy. I stopped the immunosuppressant and antihistamines, and I changed my diet. I also joined a bunch of chronic hive support groups on Facebook and started reading about other peoples stories and successes. I added some targeted supplements to help decrease inflammation in my body, and I changed many of my personal care products to reduce my toxin exposure. Lastly, I scheduled an appointment with one of my fellow dietitians to get help with navigating supplements.

After three weeks, the hives started getting better, and each week there was noticeable improvement. By mid-March, I had less than 10 hives on my body on a daily basis. When I did eat something high in histamine, the hives or facial swelling would come back, but NOW they responded to antihistamines. By following a low histamine diet, I had decreased the amount of histamine in my body to a level that allowed the medications to work.

Getting to the root cause.

Now that I had found a way to manage my symptoms, I wanted to know more. I wanted to find out what was causing my histamine issues in the first place. I ordered myself a GI Map test, which is a stool test that show the different types of bacteria in your gut and other health markers including inflammation and autoimmunity.  The results came back with elevated H. Pylori (which is a mast cell destabilizer that can increase histamine), elevated anti-gliadin antibodies (indicating an immune response to gluten), and elevated zonulin.  Zonulin is a protein in your gut that opens up the channels between the epithelial cells resulting in LEAKY GUT.

I have leaky gut. Again, I was wrong and I’m sorry. I recorded a whole podcast on leaky gut, minimizing it, and saying how rare and unlikely it is… and this whole time, I had it and didn’t even know. The GI Map test confirmed my need for a gluten-free diet and resulted in adding a couple more targeted supplements to treat the H. Pylori and heal my gut lining.

So where do I go from here.

I’ve spent the last nine years of my life telling people to eat with grace – to think less about food and their bodies, but over the past six months, I’ve done the opposite. It has really made me think about my messaging and the future of my nutrition practice.

Here’s the conclusion I’ve come to: I still think both can exist.

I think eating with grace is important for someone who struggles with chronic dieting and disordered eating. I also think that there health conditions that require specific diet changes and targeted supplements to minimize symptoms and improve health. The principles of intuitive eating can still play a huge role in someone who is struggling with chronic disease, it just may look different for someone who is healthy.

I have changed my mind on a lot of things. I have started doing more research and expanded my knowledge of functional nutrition approaches. I took a bunch of continuing education classes, received a certificate in functional and integrative nutrition, and signed up to offer more resources to help my clients with autoimmune conditions, inflammation, and other unexplained symptoms that are often written off by traditional medicine. I’m moving this way, because it has personally changed my life for the better. I have a whole new appreciation for nutrition and an ignited passion to help others use food and nutrition to heal their bodies as well.

You will be seeing less about intuitive eating from me and more about nutrition and specific nutrients and how they play a role in these bodies God has created for us. If you are not here for that, I completely understand. But for any of you looking for more specialized nutrition help, I’m here for you.

My story hasn’t ended. I am not yet cured, but my body is healing. For any of you struggling to find answers for your autoimmune or inflammatory conditions, don’t give up. Feel free to contact me through social media or my website. I’d love to hear your story.