While I’ve tried hard to not complain as the weeks of the investigational study have worn on, the truth of the matter is that I really haven’t felt well -- at all. I will be the first to say that I know it could be worse -- I could be dealing with far greater health issues than those I brought upon myself by volunteering to participate in the investigational study. And…I could be dealing with chronic health issues that are unlikely to ever improve. I have a fairly high degree of confidence that I will start to feel better now that I have returned to a strictly gluten free diet. It is for these reasons that I have tried not to complain.
I think those who have
followed along closely have a pretty good sense of the fact that the
investigational study has taken more out of me than I anticipated.
Since I decided early on not
to try not to complain, I haven’t talked that much about the investigational
study -- or about how I feel. But, every
now and then, someone asks specifically.
And in those instances, as in my blog, I have tried to answer
specifically and openly and honestly.
A few days ago, someone I
hadn’t seen in a while I asked me how things were going with the investigational
study. It was clear that she had a vague
understanding (or maybe a bit more) of what the investigational study had
involved, but it also became clear relatively quickly that she did not really
have a good sense of just how hard it has been.
It gave me pause when, after
I explained that I had gotten to the point that I was feeling much like I had
felt prior to my diagnosis with Celiac Disease, she asked if it was possible that it was all in my head. I don’t think she was trying to be difficult, or to discount what I was saying -- I actually think she really wanted to know.
As I considered her question,
I realized that at one point, I, too, had questioned whether or not my symptoms
(or some of my symptoms, at least) might be in my head. That feels like a million years ago now…and is a thought that slid slowly, seamlessly from my mind in the face of debilitating fatigue, shortness of breath on a single flight of stairs and an ever-present lightheadedness and unsteadiness that left me feeling as though the center of my world was ever-so-slightly off-axis.
At some point, another voice took over, counting down the gluten doses, encouraging me, reminding me that there is a child much like my own daughter out there who needs a treatment for Celiac Disease just as desperately as Susan needed a treatment for her peanut allergy.
I'm pretty sure I got briefly lost in my own thought, and when I returned to the conversation, I could tell my friend's interest was waning, so I simply shrugged and agreed that yes, it was possible
that it was all in my head. And I thought -- maybe it IS all in my head. After all,
anything is possible. But, I really
didn’t believe that any of it was “in my head,” and the lab work results that were
waiting for me when I got up one morning earlier this week further suggested that none of what I have been experiencing is in my head.
It was 5:00 am, and I was up with my oldest daughter, who rises at the insanely early hour of 4:30 am every day so that she can skate before school, when I sat down to check my e-mail. I saw two separate e-mails that came in just minutes apart from the University of Chicago's MyChart e-mail address. Not being sure what to expect, but very interested, I quickly logged into the hospital's MyChart system.
I opened the results of the CBC with Differential and Platelets and the Comprehensive Metabolic Panel (CMB) and with my still-foggy morning brain, I quickly scanned the results, looking for results that fell outside the normal range. Nothing. Nothing? I couldn't believe it. How was it possible that I could feel so unwell and all of my lab results could still be within normal limits?
And then, in a moment of clarity, I realized I should compare my lab results from the blood draws taken during the investigational study intake to my current lab results. And in doing so, I saw changes that I felt relatively certain were...if not statistically significant...at least relevant.
My total blood cell counts -- for both white blood cells and red blood cells -- were down, which is suggestive of blood loss, internal bleeding. My white blood cell counts, which were initially 5.3 (with a normal range of 3.5 - 11.0), were at the very bottom of the normal range, at 3.5. My red blood cells, which were originally on the high end of the normal range (3.88 - 5.26), at 5.01 had dropped to 4.71. Not surprisingly, my hemoglobin had also dropped, from 13.9 to 13.1 (normal range is 11.5 - 15.5). While definitely not anemic (yet), my total blood cell counts definitely were moving toward values that would lead to a diagnosis of anemia. And maybe, just maybe this helped explain my extreme fatigue.
I also noted that my eosinophils had increased from 2% to 6%. With a normal range of 0 - 7%, it seemed likely that such an increase was truly statistically and maybe even medically significant, and given that I know that elevated eosinophils can be indicative of allergic reactions and/or other forms of inflammatory autoimmune responses, I thought that result just might be significant.
And then, for the first time since starting the investigative study, I decided it was time to visit Dr. Google for some help in assessing a related value in the same section of the results -- neutrophils. I noted that my neutrophils had decreased, from 63% to 47%, with a normal range of 39% to 75%. It struck me that that was a big decrease, and I could not help but notice how close my current result was to the low end of the normal range. And so, I googled “low neutrophils.”I learned that people with low neutrophils often have difficult fighting off infection, which made sense given the cold I got early in the investigational study that I hung on and on, and on. And then I went a step further and googled “causes of low neutrophils.” I discovered that there are many causes of low neutrophils, including...Celiac Disease. Ah, I thought...
Later, as I was leaving for lunch with a friend, I tucked the lab results into my purse. My friend has a lot of medical expertise, and I found myself thinking it might be interesting to see if she saw the same things I did...and she did.
Which left me thinking that surely, it must NOT all be in my head...
I opened the results of the CBC with Differential and Platelets and the Comprehensive Metabolic Panel (CMB) and with my still-foggy morning brain, I quickly scanned the results, looking for results that fell outside the normal range. Nothing. Nothing? I couldn't believe it. How was it possible that I could feel so unwell and all of my lab results could still be within normal limits?
And then, in a moment of clarity, I realized I should compare my lab results from the blood draws taken during the investigational study intake to my current lab results. And in doing so, I saw changes that I felt relatively certain were...if not statistically significant...at least relevant.
My total blood cell counts -- for both white blood cells and red blood cells -- were down, which is suggestive of blood loss, internal bleeding. My white blood cell counts, which were initially 5.3 (with a normal range of 3.5 - 11.0), were at the very bottom of the normal range, at 3.5. My red blood cells, which were originally on the high end of the normal range (3.88 - 5.26), at 5.01 had dropped to 4.71. Not surprisingly, my hemoglobin had also dropped, from 13.9 to 13.1 (normal range is 11.5 - 15.5). While definitely not anemic (yet), my total blood cell counts definitely were moving toward values that would lead to a diagnosis of anemia. And maybe, just maybe this helped explain my extreme fatigue.
I also noted that my eosinophils had increased from 2% to 6%. With a normal range of 0 - 7%, it seemed likely that such an increase was truly statistically and maybe even medically significant, and given that I know that elevated eosinophils can be indicative of allergic reactions and/or other forms of inflammatory autoimmune responses, I thought that result just might be significant.
And then, for the first time since starting the investigative study, I decided it was time to visit Dr. Google for some help in assessing a related value in the same section of the results -- neutrophils. I noted that my neutrophils had decreased, from 63% to 47%, with a normal range of 39% to 75%. It struck me that that was a big decrease, and I could not help but notice how close my current result was to the low end of the normal range. And so, I googled “low neutrophils.”I learned that people with low neutrophils often have difficult fighting off infection, which made sense given the cold I got early in the investigational study that I hung on and on, and on. And then I went a step further and googled “causes of low neutrophils.” I discovered that there are many causes of low neutrophils, including...Celiac Disease. Ah, I thought...
Later, as I was leaving for lunch with a friend, I tucked the lab results into my purse. My friend has a lot of medical expertise, and I found myself thinking it might be interesting to see if she saw the same things I did...and she did.
Which left me thinking that surely, it must NOT all be in my head...
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