True Story: Ali’s Diagnosis

I’ll never forget the feeling of walking my dog up the hill near my house.  Normally this hill wouldn’t bother me, but now my heart felt like it was pounding out of my chest.  As I continued to climb, sweat began to pour off me as if I had just sprinted a mile.  Though I had easily climbed this hill hundreds of times before, today was different.

However, it wasn’t a sudden change because the preceding weeks witnessed my workouts become increasingly challenging. As an ex-athlete and a 10-year veteran in the fitness industry, this change was highly intrusive and very noticeable to me.  More importantly, I knew something was wrong.

An eventual trip to the ER that afternoon coupled with an overnight stay in the hospital resulted in a diagnosis, pericarditis- an inflammation of the heart muscle most likely caused by an infection and treated quite easily with anti-inflammatories.

Complications & Questions

If only the problem I was experiencing were that simple.  After a couple of months, the situation remained unchanged. More check-ups and blood work prompted my doctors to try a round of steroids that made me highly emotional and manic and soon worsened by my heart problems.

I was hospitalized for a week and tested for every sickness and disease under the sun. Theories? Lymphoma, leukemia, lupus or other auto-immune diseases, infectious diseases, heart disease, and the list goes on. Every day in the hospital was filled with more biopsies, CAT scans, MRI’s, blood tests, poking and prodding, but no clear real answers from anyone including the specialists.  One thing was certain- somehow I had developed a mass in my heart.

When I was finally discharged from the hospital a week later, the prevailing diagnosis was a rare bone marrow disorder called hypereosinophilic syndrome or HES.  This disorder occurs when you have an excess of “fighter” cells in the bone marrow.

Everyone was still confused at this point despite a diagnosis. In the back of my mind, doubt dredged up so many unanswered questions. Why had I developed a mass in my heart?  Why were my liver numbers elevated?  Why was my immune system not functioning right?

Life Flipped Upside Down

Over the next several months, life became a routine of seeing every specialist imaginable (some outstanding and some not so good). I fought with my insurance company almost daily.  Though I had made it my full time job to recover, everything I knew about healing one’s body from illness did not seem to apply.

Thanks to the newly diagnosed heart condition, exercise was taken off the table by my physicians.  As a health practitioner, I had always used exercise as medicine for my body and mind.  My reality was proving to be highly challenging especially since I’m a self-proclaimed “control freak.”  Though yoga and walking became part of my routine, I began to feel a deep hole form in my life as I lost control over what was happening to me physically and mentally.  My former identity of a fitness instructor and exercise lover took the back seat.

I Became the Investigator

With more questions than answers, my family and I began our own research.  Given the fact that I had experienced gastrointestinal issues my entire life, we decided to start there and finally came across the topics of gluten sensitivity, celiac, and related health complications such as auto-immune deficiencies. Coincidently, we ran into a friend on Super Bowl Sunday who shared how a few years back he had suffered with odd medical issues for a year and was finally checked for Celiac Disease.

Looking back at my diet, I recalled how eating foods like sandwiches and pizza would almost always cause stomach aches and bloating.  I had become so used to this feeling after eating grains that I had accepted that this horrible state as being ‘normal’.  Years of being told that I had Irritable Bowel Syndrome and to eat more whole grains, fiber, and whole wheat to help me feel better never did the trick.

My Gluten Miracle

I decided to go gluten free and immediately felt a world of difference. It was not really necessary to make major changes in my home since my diet was already focused on eating whole, non-processed foods. The biggest challenge was eliminating whole wheat (bread, cereal, and granola bars for convenience).

After a couple months of feeling much better, my doctors wanted to test me for Celiac once and for all. Since I had extremely low antibodies due to the impaired immune function the thought was that I would “fail” the celiac blood test (Low antibodies can create false negatives in blood testing). Instead they recommended an endoscopy, but they wanted me to do a “gluten challenge” first since my “gluten-free” status would surely obscure the results.  Ultimately, I wasn’t willing to eat gluten again as I feared doing more damage to my GI tract and possibly other organs. The test came back showing “inconclusive damage”.

Weeks passed and I continued feeling much better.  My specialist’s research of inflammatory bowel disease (IBD) connected other documented cases of IBD and heart issues. An expensive blood test for IBD and the celiac gene with a new GI doctor came back with some conclusive news – “Ali, of all the Celiac gene tests I’ve done in my practice, you have the highest score I have ever seen!” I had scored a 7 on a scale of 1-8 for the celiac gene called DQ2. Ninety-five percent of celiac patients carry this gene.  The GI doctor explained that while she was unsure that Celiac caused all of the initial problems, people with untreated celiac have a significantly higher likelihood of developing other autoimmune diseases.

The moral of my story underscores why it’s so important to listen to and be aware of your body.  Never accept answers that don’t make sense when it comes to your health.  And know that though doctors can be very helpful (especially when your life is on the line), they don’t know EVERYTHING.

Three Life Lessons

1. Listen to your body.  Only you know what feels right and wrong. If something feels off, trust your gut!  When something feels abnormal, take action to find the root cause of the problem.

2. Do your own research.  Especially if the doctors are not giving you satisfactory answers or tools to get better. A word of caution though- take everything you read with a grain of salt. Look for multiple sources of symptoms you are experiencing and separate anecdotal information from solid research.

3. Consider Alternative Healers. I learned the hard way that traditional medicine doesn’t hold all the cards in the game. Holistic medicine professionals (naturopaths, acupuncturists, chiropractors) seem to be ahead of the curve on gluten sensitivities and other food intolerances.