Diagnosis Confirmed!

My first visit with the internal medicine specialist was a little stressful for me, but one of relief, as well.  It was stressful because I didn't really know where to begin.  I was having so many symptoms and they seemed to cross multiple systems in the body.  But it was also one with relief because for the first time in thirteen weeks, the doctor looked at me like he was genuinely interested in what was going on, and just as curious as myself as to the cause!

We discussed several things that were happening-- from the rapid pulse at random (it was 114 in his office at the time), the drug reactions (which I had never had prior to all of this), to the fatigue, the heart palpitations, and even the rashes on both my arms.

The best part about the visit was that there was an answer that would explain several (if not most) of the symptoms: Celiac Disease.  But how could I have CD with the blood tests coming back normal?  His answer was that I had Dermatitis Herpetiformis (DH) and that in order for the blood tests to be positive for CD, I would have had to be on a high (very high) gluten diet for 2 to 6 weeks!  And each time I was tested, I had either been off gluten for a while, or on a very low gluten diet.  The DH was definitive enough, and he told me that experts do not recommend a small intestine biopsy as long as that rash is present.

My DH had been present for 5 years, and nothing (and I do mean nothing!) could make it go away-- whether it was OTC medications, or prescribed.  It will take some time to heal, but it is gradually softening and diminishing.

The internist did order other tests, including more thyroid tests, a 24-hour UA, a DEXA scan (for bone density), a Holter Monitor, and a stress-echocardiogram to find out more about why my heart might feel so weak, or have palpitations.  He also suggested I continue my vitamin supplements, particularly D3, K, Iron, and Calcium/Magnesium.

In the meantime, I joined a couple of online support groups for CD and found an immense number of similarities in symptom stories, particularly with heart palpitations, weakness, and fatigue.  It seems as though the medical community does not have any direct answers regarding the connection between the heart and CD, but keep in mind that CD is a cross-system disorder and can affect any system in the body in a number of ways.  Perhaps the medical community just doesn't want to say one way or the other... playing it safe in their eyes, but not so for the CD community.

My thyroid tests ended up being normal, and at this point I don't know the results of the 24-Hour UA, the DEXA scan, nor the Holter Monitor results (which I wore for 48 hours).  During my time wearing the monitor, the palpitations were mostly quiet or so faint I couldn't be sure it was what I was feeling, so I guess it will be up to the experts to decide.

Happily, my stress-echocardiogram showed "one beautiful-looking pump" (cardiologist's words) with nothing wrong, whatsoever, that he could see.  My blood pressure was great (108/78), my cholesterol was great (162), and there was no visible reason to suspect anything wrong with my heart.  Though it did make me feel better, it does not take away the nervousness when something feels weird with my heart.  Perhaps it is my body's way of dealing with such a vital organ.  I can handle anything with any other part of my body, but my brain does not like it when my heart doesn't feel normal.

At the least, I can say that my heart seems to have settled down a bit and is in a mostly quiet mode these past few days.  Let's hope it continues.