This is Part 3 of My Big Fat Autoimmune Mess! series. The other posts in this series include:
Disclaimer: I am not a doctor or medical professional. This site is for informational purposes only and does not provide medical advice.
Okay. So, I’m not sure what’s happened within the past month or two, but our readers have come alive! And we are LOVING it! For example… I absolutely love that people are trying to help me find the true diagnosis for my unspecified autoimmune situation.
I am open to any and all suggestions, and have researched every condition all of you have mentioned. And, it warms my heart to see everyone taking time out of their day to help others… to help me. This is true support and is what the autoimmune world sorely needs.
I think it’s time I explain that my newest autoimmune condition still remains unspecified until further notice, because I made the decision to STOP seeking an official diagnosis.
**Before I go further, I’ll make something clear: this is an opinion piece about my personal situation, NOT medical advice. In addition, there is some risk with this course of action, but I accept it at the moment.
I do not deny that a diagnosis beyond just “autoimmune disease” has benefits, and serves an important purpose. I am by no means encouraging anyone to stop searching for answers. I’m bolding and highlighting this to make it extra, extra clear.
Even still, I chose to forego an official diagnosis (this time) and I’ll explain why. But for now…
Why an autoimmune diagnosis is helpful.
I can’t think of a scenario where a general diagnosis of “autoimmune disease” would not be helpful, especially if someone is experiencing strange symptoms. Even if the doctor says “You have some sort of autoimmune disease, but I don’t know what it is…” at least you have something to work with.
Plus, it’s validating when you hear that it’s not all in your head, and there is actually something physically wrong. I remember this feeling, vividly. I was grateful and relieved to receive my Hashimoto’s diagnosis, even though it meant I now had a chronic illness.
But a more specific autoimmune disease diagnosis, such as Lupus, Hashimoto’s, Multiple Sclerosis, etc. also has major benefits:
- It helps you know which parts of your body are most vulnerable to an autoimmune attack and what symptoms to pay attention to as a result.
- Helps you find the right medical specialist, who will likely know which tests to order so you can monitor your disease progression. This testing is especially helpful to gauge the progress of your treatment plan.
- Narrows down your treatment options – especially in regards to surgical procedures and pharmaceutical options like biologics.
- Connects you with others in the same boat – community is critical.
- Gives you more details for educating yourself about your disease and prognosis.
- Narrows down the potential root causes, like specific infections that are commonly associated with your disease.
No doubt, all of this is helpful. But, there are some unfortunate facts behind finding a specific diagnosis. This excerpt from The Autoimmune Wellness Handbook gives insight as to why:
“According to the American Autoimmune Related Diseases Association (AARDA), those with an autoimmune disease spend an average of 4 years seeking diagnosis, with visits to more than 4 physicians in the process. Some go undiagnosed for years, while others get misdiagnosed with other conditions. The undiagnosed and misdiagnosed rate for just 1 of these disease, celiac disease, can be as high as 83 percent, which shows how difficult it truly can be to obtain answers.”
It goes on to say…
“One of the biggest issues with the treatment of autoimmune disease is that there is no medical specialty to serve these diseases as a whole. In combination with them being poorly understood by the medical profession, in general, this leads to patients being bounced around between primary-care physicians and specialists before obtaining proper testing and treatment. An AARDA study showed that 46 percent of autoimmune patients were told they were complainers, or too obsessed with their health, instead of being offered the medical testing and treatment they needed.”
And all that, is just a small part of why I’m not busting my butt traveling from specialist to specialist, with fingers crossed, that one of them will grace me with the name of my newest condition.
Seeking a diagnosis is not something I find particularly pleasuring, especially since I was put through the wringer for my Hashimoto’s Disease. Now, with two toddlers and a full schedule, the thought of all those appointments, testing (some of which would be invasive), paying for it all, and finding someone to watch the kids… well, that alone will send me into an autoimmune flare.
But, my reasoning goes much deeper than that.
The main reason I’m NOT actively seeking a specific diagnosis at this time:
In 2010, I received my first autoimmune diagnosis: Hashimoto’s Disease. I definitely needed that diagnosis and validation to prove to myself, my doctors, and my family that I wasn’t faking it or going crazy.
If you read my full story, you’ll see that this condition (meaning the attack on my thyroid), is now in remission, both from a symptom and antibody count perspective. In all the years of learning to reverse my Hashimoto’s Disease, I learned one major thing:
Hashimoto’s Disease is NOT a disease of the thyroid, but rather a disease of the immune system.
Even if I were to have my thyroid surgically removed (something I considered before I realized it’s not a solution), it might temporarily keep my immune system from attacking my thyroid… you know, because it’s not there.
But, removing my thyroid doesn’t fix the underlying problem: a triggered immune system. It’s only a matter of time before it starts attacking something else, like… for example, my small intestines when I eat gluten. Also known as Celiac Disease. If I remove a victim from a bully, he or she is just going to find a new victim.
Sometimes, there are even multiple victims at once. About 25 percent of autoimmune patients go on to develop multiple autoimmune conditions, also known as multiple autoimmune syndrome or MAS1. This has proven true for me.
The immune system is to blame for any condition that is autoimmune in nature. And the immune system is what needs to be modulated to reverse it.
This is why the same dietary protocol Dr. Terry Wahls used to reverse her MS (The Wahls Protocol) is effective for reversing ALL autoimmune conditions. It’s why you find books like The Autoimmune Solution and Beat Autoimmune, neither of which address specific autoimmune diseases, but instead focus on the root causes of why immune systems go rogue.
My thoughts exactly.
There was no rush to fit the meaning of all the antibodies into a perfect diagnostic box so we could give it an official name. Given that I have no plans to pursue any type of autoimmune pharmaceutical drug, except maybe Low Dose Naltrexone (again), I do not see the value in seeking an official diagnosis when I already have two doctors working my case.
Having a nameless autoimmune disease does not change the fact that my immune system is in need of improved modulation. I still need to search for and address all potential root causes such as leaky gut, nutritional deficiencies, toxins, infections, and stress. The fact remains: I have an autoimmune disease.
Now, is it helpful to know that my body is producing antibodies towards double stranded DNA, joints, skin, etc. based on my symptoms and antibody results?
My current healthcare team is well aware of these antibodies, and if I don’t improve, or start showing concerning symptoms, we know the first places to look for damage. I’ll probably even hit up a few specialists for more advanced testing and treatment options, too. If I get to that point, I’ll probably have enough evidence for an official diagnosis anyways.
But, cheers to hoping it doesn’t come to that. Since writing my post first posts about this situation, I’ve experienced amazing progress, including the complete elimination of symptoms and reduction of some, but not all, antibodies.
Regardless of whether or not I have a diagnosis doesn’t change the fact that..
All autoimmune diseases, no matter the severity or whether or not they have a name, have the potential to be prevented and reversed.
That’s why I decided to share my story.
First to serve as a warning sign to show that “Hey, if you have one autoimmune condition, and you don’t take the necessary steps to get it under control, you could develop more antibodies towards other parts of your body.” Because that’s what happened to me. I will gladly be the canary in the coalmine if it helps others.
I also choose to share my story, because while I may not officially have Lupus, or Scleroderma, or whatever else… I DO have those antibodies. Maybe you do, too. Maybe you also have positive Anti-Nuclear antibodies with a speckled pattern. Or Anti-DsDNA antibodies. Or Anti-Scl70 antibodies. Perhaps you also have my symptoms. Or an unnamed autoimmune disease.
And if I’m able to crack the code to my issues, then perhaps my experience can help you do the same.
That’s why I’m sharing my story as it unfolds. Over the past year, since receiving the initial test results, I’ve:
- Reduced some of my other autoimmune antibodies, and completely eliminated others.
- Eliminated all of my symptoms I originally wrote about in this post – all of them, without the use of any pharmaceutical drugs.
- Put my Hashimoto’s in remission.
- Stopped taking my thyroid medication. (If you also have Hashimoto’s and want to get started on your path to healing, click the button below to grab our Free Hashimoto’s Starter Pack.)
Given this progress, I am hoping this newest autoimmune condition won’t even have time to be named… because it will disappear, just like my Hashimoto’s. To see how I made so much progress, click below to read the next post in this series:
- Cojocaru, M., Cojocaru, I., Silosi, I. Multiple autoimmune syndrome. Maedica Journal of Clinical Medicine. 2010 April; 5(2): 132–134. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/.
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Hi! I’m Anna, co-founder of Healthy Habits Reset. After managing my own autoimmune diseases using lifestyle, habit, and mindset changes, I now work to teach others how to navigate the treacherous and confusing journey of chronic illness living. I firmly believe YOU hold the power to question, think critically, and become your own rock-solid advocate in a world full of unhealthy habits, so you can find the healing you deserve.