woman's hand blocking dominos from falling with text overlay - My Big Fat Autoimmune Mess! Why I Stopped Seeking a Diagnosis

Why I Stopped Seeking a Diagnosis for My Unspecified Autoimmune Disease

Anna Living Well with Autoimmune Disease, My Autoimmune Mess! 4 Comments

 

This is Part 3 of My Big Fat Autoimmune Mess! series.  The other posts in this series include:

Part 1:  I Traded My Hashimoto’s Disease for A Big Fat Autoimmune Mess!

Part 2:  My Big Fat Autoimmune Mess!  My Symptoms and Test Results

Part 4:  How I Healed My Leaky Gut (& Finally Reintroduced Foods Without Flaring!)

Disclaimer: I am not a doctor and this is not medical advice.  The information in this post cannot be used to treat or diagnose any disease.


woman's hand blocking dominos from falling with text overlay - My Big Fat Autoimmune Mess! Why I Stopped Seeking a DiagnosisOkay.  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.

But then, there are the nasty comments, too.  Both Frank and I have received more of these over the past months.  Comments like these are part of the blogging territory I suppose, (or just putting yourself out there) especially if you’re writing about anything of significance. 

Topics worthy of discussion will always bring out passion, varying opinions, and controversy (as they should!).  It’s the passion that leads to some of this animosity, and we understand it, and even welcome it (as long as commentary remains respectful).  Honest, civil debate and conversation helps further the betterment of humanity.

Woah, deep.  I know… let’s bring things back into focus.

With these two posts harboring both helpful AND negative comments/e-mails…

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 still 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 basically 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 take my thyroid out (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 MAS (source).  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.


So, when I tested positive for antibodies associated with Lupus, Systemic Scleroderma, Celiac Disease, and Rheumatoid Arthritis (just to name a few), AND also received a diagnosis of Psoriasis from my dermatologist due to the tiniest patch on my big toe, it became clear that my immune system is still attacking my body… multiple parts actually.  My doctors simply said “Oh, look at that, you have more autoimmune antibodies, let’s get to work on reducing those before they do damage.”

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 gluten, double stranded DNA, joints, skin, etc. based on my symptoms and antibody results? 

You bet! 

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 original posts, I’ve experienced amazing progress, including the complete elimination of symptoms and reduction of some, but not all, antibodies.

Which leaves one more thing left to mention…

The reason why I chose to write about this in the first place.

I’ve noticed over the past few years that there seems to be a strange hierarchy.  The more diseases one has, or the more severe they are… the more credibility they receive when they reverse them. 

People listen when someone like Dr. Terry Wahls goes from wheelchair to walking, as they should!  But when it comes to reversing a seemingly “mild” condition like Hashimoto’s, it’s not as big of a deal.  (I laugh when people refer to Hashimoto’s as mild… could not be farther from the truth.)

So, when I realized that my new autoimmune condition doesn’t have an obvious name, my first hesitation to writing about it was losing my credibility, for lack of a better word.  I feared that people wouldn’t think my situation warranted a look because it didn’t come with some scary name like Lupus, Systemic Scleroderma, or Multiple Sclerosis.

But then, I realized: this is not a competition.  We need to stop comparing our diseases to one another and start focusing on the bigger picture: all autoimmune diseases, no matter the severity or whether or not they have a name, have the potential to be prevented and reversed.  And we should all work together, as a team of autoimmune patients, to make this happen.

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. 

Let’s say I crack the code to my autoimmune puzzle and I’m able to completely eliminate those symptoms and reduce those antibodies… would you be interested in how I did that?  Even though I don’t officially have your disease?  I would think so. 

That’s why I’m sharing my story as it unfolds.  Over the past year, since receiving the initial test results, I’ve:

  • Kept my Hashimoto’s thyroid antibodies close to zero.
  • Reduced my thyroid medication from ¾ grain down to ¼ grain, with hopes of weaning off completely within the next year
  • 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.

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, within the next year or two.  And I plan on sharing every step of the way, even the failures, so we can all learn and help one another to heal.

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Comments 4

  1. My daughter is also “Anna” and we have reversed all her horrible symptoms as well. She is still dependent on many supplements, but pretty certain her autoimmune disorder/hypermobility were caused by mycoplasma and/or Bartonella. So once we overcome those bugs we can start letting go of some of the supplements. Good luck spreading the news!

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  2. I haven’t read your other posts. Sorry. I’m wondering if you’ve consulted a naturopath. I had psoriasis for years. Doctors gave me creams that helped but after a week caused me to break out in little blisters all over so I could only use them for less than a week at a time. Then I saw a naturopath who diagnosed me with dysbiosis and put me on stuff to help reverse the dybiosis, as well as an elimination diet to determine food sensitivities. Turns out I was sensitive to dairy. I eliminated dairy and after several months my psoriasis was gone… The naturopath explained it takes a while because of you have lesions on your skin you also have them on your other organs and your body will heal internal organs first. Unfortunately I didn’t continue to follow the plan to rid the dybiosis. I also still ate occasional dairy but not enough to flare up the psoriatic. Otherwise I continued to eat poorly as before, minus dairy…mostly. Then I was having other problems and went to see a naturopath… Turns out my crappy diet created more food sensitivities. But I was busy and following a special diet is hard. I was eating things I’m sensitive to including dairy. My psoriasis came back a bit but not bad and when I’d cut dairy it would go away. Then my muscles started to get weak and the tendons around my hips and knees grew painful, my joints around my sternum and my cervical spine and one finger also grew painful. I became extremely fatigued. My doctor and I suspect psoriatic arthritis but I am waiting to see a rheumatologist. I saw a naturopath again and even more food sensitivities have developed because I ignored previous recommendations. Now I’m following them and also working on reversing the dybiosis and leaking gut syndrome that leads to food sensitivities and autoimmune diseases. The longer I stay away from the foods I’m sensitive to the less my pain gets but it’s taking time. I’ve adopted a mostly paleo diet since I’m sensitive to most grains and dairy. If you haven’t seen a naturopath or a doctor of functional medicine, I highly recommend it. Deal with the source of the problem, not just the symptoms.

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      Hi Sonya! Thank you sharing your story! It all sounds familiar… very similar to mine. I too have struggled with gut dysbiosis and food sensitivities. It was a major part of my battle with Hashimoto’s. But, by following a healing diet, I was able to reverse it and now my Hashimoto’s is almost non-existent (you can read about that here). With this newest unspecified autoimmune disease that developed after the birth of my son, I went back to the drawing board and focused on healing my gut, along with a few other things. I am now symptom-free! You are so right that we all need to go after the root causes, and not just the symptoms… and a functional medicine practitioner is the perfect person to start working with in order to do just that. Thanks, Sonya!

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