My Difficult ITP Diagnosis Journey That Made Me An Advocate

I don’t really remember a day of my childhood where I felt “good”. Of course, at the time, I had no frame of reference for what “good” was supposed to feel like. I didn’t even realize other children didn’t deal with the same problems I did.

Rather, I just knew I didn’t have the same energy as my peers. I felt constantly tired and chronically thirsty. Moreover, my muscles ached, my stomach always hurt, and I had to go to the bathroom much more often than the other kids in my class.

Oftentimes, I appeared confused, uncoordinated, and way behind in my classes. But my extensive vocabulary and 35-year-old college professor way of talking made me a walking conundrum.

The 1980s – A Rough Time for Sick Kids

This was the 1980s. Way before half the conditions I live with were considered mainstream, or even heard of, for that matter. As a child, I hopped from doctor to doctor. The doctor’s told my parents nothing was wrong with me, physically or mentally, that could account for my chronic stomach pain or behavioral anomalies. I even took an IQ test, but since I scored slightly above average, nobody understood why I had learning troubles in school either.

The Changeling

Eventually, to my extreme detriment, a doctor concluded I “made it all up for attention”. That doctor drove the last nail into my coffin.

No one treated me like a person anymore. Instead, they regarded me as a strange object that had snuck in the back door in the middle of the night like a woodland changeling and joined the family. Everything I did was met with extreme suspicion. No matter what I said I was experiencing (stomach pain, fatigue, etc.), nobody believed me. Since there was no evidence, there was nothing wrong. Plain and simple.

So Grateful for Strep Throat

My only saving grace was that I quite often got sick with ear, nose, and throat infections. This gave doctors something tangible to work with and treat, and, during those times, my caretakers took me more seriously. The problem was, no doctor tried to figure out why I was getting sick all the time, so each visit they put me on a round of antibiotics and sent me on my way.

Which, of course, only made things worse in the long run.

The Journey Begins…Again

Not until after I graduated high school, bought a car and started living in my own apartment (at 17, thank you very much), did I finally get to explore what was going on with my health on my own terms. As soon as I obtained a job that offered health insurance, I went to doctor after doctor for tests. 

I never believed my problems were “all in my head”. By that point, I already had diagnoses for bipolar disorder, ADHD, and anxiety disorder. Unfortunately, with these diagnoses, doctors took me even less seriously than they did when I was a child.

Now I was just some “hysterical woman” who went to doctors for attention!

All Health Breaks Loose

At 22, my body started malfunctioning so badly, it finally became obvious that something was very wrong with me. I dropped weight at an alarming rate, my hair was falling out in clumps, and–forgive the detail–my bowel movements contained nothing but liquid. It felt like somebody kept punching me in the stomach. I had no energy and often felt as if I was dying.

After one last frustrating and incredibly unhelpful visit with my conventional doctor, I decided to make an appointment with a naturopathic physician. The man took one look at me and said, “I think food is killing you.”

My new doctor ordered extensive blood work and allergy tests. He also put me on a food elimination diet to see which foods were making me so sick.

Finally, Answers: It’s ITP!

When my blood work came back, the naturopathic physician explained that my platelet counts were abnormally low. Platelets help your blood clot when you become injured, and, apparently, my immune system was destroying them! I found out I was also allergic to many foods, chemicals, and environmental toxins. Furthermore, the elimination diet revealed that I reacted very strongly to wheat, gluten, table sugar, and corn syrup.

A hematologist I went to for my low platelet count diagnosed me with ITP (immune thrombocytopenic purpura). This autoimmune disorder causes your body to attack your platelets, which you need to form blood clots. The hematologist also saw the notes from my naturopathic doctor and said I had celiac sprue. I hadn’t heard of the term but knew I had a horrible allergy to gluten. She said, “Yes, you get sick when you eat gluten. You have celiac disease.”

So, celiac disease and ITP. Two autoimmune diseases. That’s why I had always been so sick! I told my family, but they still didn’t believe me, a huge kick to the gut. I thought for sure they’d fall over apologizing for how they’d treated me. Instead, the “attention-seeker” label I received during childhood followed me for the rest of my life.

Behold, the power of medical doctors who have no idea what they’re talking about!

The Aftermath and Beyond

After many years, I finally figured out how to stop accidentally poisoning myself with gluten, allowing my gut to heal. Gluten-free labels didn’t exist when I experimented with different foods. Instead, I had to memorize all the words that meant gluten to avoid foods containing it.

Unfortunately, the damage to my mental health had already occurred. I wouldn’t find out for another couple of years, but years of medical trauma and not being believed and cared for had resulted in PTSD. 

About 10 years ago, I started my website “I Told You I Was Sick” and made it my mission in life to help people who are struggling with mystery symptoms know that they are not alone and not crazy.

I wanted everyone whose doctor had dismissed them and whose family members raised an eyebrow at their symptoms to know that diagnosis is possible. You just have to keep fighting for it. 

It’s been over 15 years since my uphill battle for a diagnosis of celiac disease and ITP began. I didn’t know it at the time, but many more battles would come. More obstacles, more disbelief, more sickness, more tests, more misery, and even a complete nervous breakdown that lead to my most recent diagnoses. 

Moving Forward

I’m beyond grateful for the Internet. Using the internet, I was able to find the answers I needed, because even my naturopathic physician couldn’t tell me I had celiac disease or ITP. I had to find that out from my hematologist and do all the research on my own. After all, the concept of “food allergies” was still in its infancy back then.

Thankfully, the past few years have brought attention and notoriety to gluten intolerance, celiac disease, and even ITP. Restaurant menus and labeling laws have changed, and I can finally buy food at the grocery store and dine out with friends without wondering if gut pain would plague me for a week afterward.

In a way, I kind of feel like a pioneer. What baffles me, though, is that chronic pain sufferers still don’t get the recognition they deserve. Young people nowadays suffer from mystery symptoms even worse than mine, yet they’re also treated as though they’re making it all up!

Information, diagnostic criteria, and labeling laws may have changed, but doctors are still handing out social death sentences. Statements like: “Well, she’s just making it up for attention,” do not benefit anyone. 

This mentality needs to stop. People are not going around pretending to be sick. They are sick, and they’re being ignored and dismissed. This shouldn’t still be going on, especially now that we know that autoimmune diseases are on the rise and chronic pain has become a serious epidemic.

If you’re still suffering from mystery symptoms, remember, you’re not alone. There’s an entire community out there just waiting for you to interact with. Don’t give up, don’t give in. Keep fighting for your diagnosis. One day, you’ll look that stubborn doctor right in the eye and say, “I told you I was sick!”

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