Hearing other people’s health journey has always helped me. I thought that by sharing my autoimmune story you may find some strength from my past.
When I was a kid, I was considered the healthy one. I had a few food sensitivities (nuts and eggs), sometimes had trouble with anxiety and if I didn’t get 8 hours of sleep every night then I would end up with a cold. Other than that I rarely got sick. Compared to my parents whom both had had cancer and other health issues and my sister who was diagnosed with a neurological disease as a toddler and struggled with it for most of her childhood. Turns out that neurological disease (Acute Disseminated Encephalomyelitis) was an autoimmune disorder. However we didn’t put it together until decades AFTER I became ill.
What is an autoimmune disorder?
An autoimmune disorder is when the immune system overreacts and attacks it’s own tissues. Different diseases or disorders attack different parts of the body. In the instance of Acute Disseminated Encephalomyelitis, it causes inflammation in the brain and spinal cord and damages the protective coating of the nerves. It’s similar to MS but more likely in children.
Examples of autoimmune diseases
Some of the most common autoimmune diseases included the following:
- Graves Disease
- Multiple Sclerosis
- Diabetes (Type 1)
- Sjogren's Syndrome
It wasn’t until my twenties that I started getting sick. First came the environmental allergies then came additional food sensitivities (bell peppers, chick peas, seeds) and then those sensitivities became severe.
One night, back in 2010, I was eating out at an Asian restaurant, and got the spins before I even finished my meal. Turns out they had used sesame seed oil in the dish even though I had warned them of my food sensitivities. Next came the full body sweats, dizziness, gas, bloating, intestinal pain and then diarrhea. I was so dizzy that I was really struggling to main consciousness let alone composure as I stumbled to the restaurant bathroom. This was the first sign that something was terribly wrong.
Within a year of this episode, my boyfriend (now husband) and I went on a 10-day New Year’s Eve cruise to the Mexican Riviera. To celebrate, we both ended up with the stomach flu within 12 hours of boarding the ship. My husband recovered after another 24 hours but I remained sick to my stomach for the next 7 days. I was barely eating food as we arrived back at home after the cruise ended. What a way to ring in 2012?!
While I was no longer acutely ill, I didn’t feel well. Through 2012, I would randomly feel like I had the stomach flu. It would last for a few days and then I would go back to my routine. But towards the end of the year, I got so sick to my stomach that I was bedridden for about a week. For the next 3 months, I was sick every day and I don’t know how I managed to function. There were days that I felt like I was struggled to remain conscious. My boyfriend (now husband), would try and talk to me but I couldn’t understand what he was saying. He begged to take me to the ER on multiple occasions. Life was fuzzy.
By January of 2013, I had finally started to see a team of specialized medical doctors about my health. I also started working with a dietician via my gastroenterologist. Working with them helped me realize that a lot of my GI symptoms were due to food sensitivities. The list had over 20 different foods on them and I needed to remove them all from my diet.
I was also seeing another specialist that diagnosed me with endometriosis. My symptoms and physical exams provided enough evidence to support that I had significant and severe scarring. I was also told that I probably would have trouble conceiving a child. I was 34 and they told me that I should have started trying to have kids 10 years ago. Not helpful.
It felt good to know what was causing so much pain but there was no cure for any of it. My GI said I that I need to find a way to deal with the symptoms because this is considered ‘livable’ as it’s not life threatening. My gyno said that I should ‘drink coffee for energy’ and ‘take motrin’ for pain. My GI was slightly more thoughtful and suggested meditation and acupuncture. Both great suggestions. I still meditate to this day.
After removing those reactive foods from my life, I actually started to feel better. It was a huge improvement from being bedridden but it wasn’t perfect. I was still feeling fatigued and sometimes had trouble with brain fog. If I would get a cold or flu, it would go on for weeks or months. I knew that something wasn’t right but didn’t think that anyone or anything could help me. So, I ignored it.
My boyfriend and I moved on with our life. We moved to San Diego to help reduce my stress, got married (to reduce our mother’s stress) and renovated our home.
Then in 2015, I got pregnant.
While this was truly a miracle, it was not the joyous occasion that we had hoped for during the previous six months of trying to conceive. I found out I was pregnant in the ER. I was in so much pain from what I thought was cramps that I went to urgent care. They said ‘it’s not your period. You’re pregnant.’ I was dumbfounded. I actually tried to argue with the doctor and tell him that wasn’t possible. Just fyi, doctors find this irritating.
This should have been the happiest moment of our lives but it turned into a 5 hour wait in the ER to find out if my fallopian tube was about to rupture because of an ectopic pregnancy. Once they figured that it was a viable pregnancy, I was then put on bed rest to help prevent a miscarriage. I was on some sort of rest for my entire pregnancy.
My body hated being pregnant. It was incredibly painful and exhausting for me. My anxiety was through the roof. I barely left the house left alone the couch. By the time I was 32 weeks along, I ended up in the hospital with preterm labor. I was in active labor and having regular contractions. They told me that there was a 51% chance that I was going to have the baby that night. The rest of that night was a blur of specialist and contractions.
By some miracle, Tyler decided to stay put. We left the hospital on Valentine’s Day 2016 and he was born on April 2, 2016. It was a full 2 1/2 months later. He was actually 5 days overdue! He’s very stubborn and this was a good sign of his personality. Luckily he was born very healthy.
I, on the other hand, was in significant pain. The recovery from the birth was worse than the pregnancy. All the symptoms I had first had back in 2012 were back and they were worse. I was fatigued; there were painful GI issues, the terrible brain fog, among other issues. My doctor said that he couldn’t explain and didn’t know how to treat me. He sent me off to a rheumatologist and a dietician. This rheumatologist was pretty sure I had arthritis or a similar autoimmune disease from the description of my symptoms. This was the first time someone suggested that I had any sort of autoimmune disorder.
What causes autoimmune disease?
I’m not alone in having my health decline after pregnancy. Many of my friends have gone through the same thing. However, there is no one specific cause of autoimmune disease. It seems like many factor may play a role in if you develop an autoimmune disorder such as genetics, trauma, viruses, stress, and other environmental factors.
If autoimmune disease run in your family, that in itself is not necessarily harmful. However, what you are exposed to throughout your life can lead to causing your autoimmunity. Think of it this way, if genetics are the gun then your environment is what pulls the trigger on your autoimmune disease.
The rheumatologist was surprised once she got my labs back because she said I was fine and that should take aspirin for the pain. I cried like a baby in that doctor’s office. I was sick. And getting sicker with absolutely no clue as to what was wrong.
I had vaguely heard of AIP but since I was already restricted I wasn’t interested in removing any more food from my diet. When the dietician suggested I try the AIP diet, I was pissed. She wanted me to stop eating my beloved bread?!? No ground pepper or cumin?!? I thought this woman was insane but I was desperate so I did everything she told me to do. To my surprise, I actually started feeling better eating AIP. I ended up having to cut out a few additional food but I was finally able to think clearly and move without pain. Also my dietician turned out to be completely sane. The AIP diet was the best course of treatment for me and started me down the healthy path I'm currently on. She's a fantastic dietician and friend. I highly recommend her. You can contact her here.
I never did go back to that rheumatologist. I finally found a good doctor (naturopath) in 2017. She diagnosed me with Leaky gut, Epstein-Barr Virus (amongst other viruses), Hypothyroidism, and eventually systemic candida (2018-2019) in addition to the previous diagnosis of endometriosis and food sensitivities.
Autoimmune disease treatment
There is no cure for autoimmune diseases. Western medicine mostly tries to treat the symptoms and to use anti-inflammatory and immune suppressing drugs.
Since my illnesses are on the Autoimmune Disease spectrum*, not to mention the nasty side effects of medicine, I choose to look for alternative treatments. I work with a naturopath to treat the root causes of my illnesses as well as use the AIP diet to reduce my inflammation. I still seek out western medicine as needed. I have a great team of doctors and medical practitioners that I turn to for help me get to my optimal health.
Can you live a normal life with autoimmune diseases?
My health is not perfect and I need to make adaptions to my daily life. I still struggle from time to time but my health is more reliable. I’m still following the AIP diet with additional restrictions to adapt to my food sensitivities. My thyroid function is stable but I still struggle with keeping my EBV antibodies down. And the systemic candida has been a beast. This fungal infection is relentless and difficult to treat.
That being said, I wake up in the morning with a clear head and no pain. I still have flares but they are manageable. I’m still on my healing journey but I have my life back.
*Please note that endometriosis, leaky gut and hypothyroidism are not classified as a true autoimmune disease. However endometriosis is an overreaction of the immune system and on the autoimmune spectrum. It is considered an autoimmune related disorder. In my opinion, if it quacks like a duck, it’s a duck.
Additionally, Hypothyroidism can also cause Hashimotos and other health problems.
Leaky gut has also been found to be associated with triggering autoimmune conditions.
I'd love to her more about you. Can you relate to my health journey? Tell me your story in the comments below!