Friday, April 13, 2012

A Sample Size of One

We had pie for breakfast today, for the second day in a row.  Leila made pie to go along with Easter, and in one of the glorious Gardunia traditions - leftover pie for breakfast. As I ate my second piece of pumpkin pie, I seriously considered that this could be my last pie.  This last week I had another round of blood tests to monitor my liver enzymes.  Wait, let me back up, there is more to this story that I have not told.

Almost two years ago now, I thought I would go for a physical.  I hadn't had one since I was in high school and it mostly consisted of turning my head, coughing, and trying to get out of the office as fast as possible with a signature so I could run cross country.  Pretty routine.  My weight was good, a little higher than I had been before, but still on the thin side of normal.  My blood pressure was good.  Then my blood work came back.  Cholesterol - normal.  Blood sugar - Normal.  Liver enzymes - Four times above normal.  Dangerously high.  My doctor was concerned that I might have hepatitis, reasonable since I had been exposed repeatedly on my mission in the Leon University Hospital.  I worked in the emergency room for service and helped with two patients that essentially died of liver failure along with some severe infections and broken bones.  

My local doc referred me to a specialist - Dr. Semon.  He came into the examining room with an IV bag pumping chemotherapy into his spleen.  He had stage four cancer, and no patience for the apparently healthy guy with abnormal liver enzymes.  He felt around and told me it could be inflamed, but was most likely a fluke.  A false positive. "Get tested again." he said.  A few days later he called.  "Get tested again.  Still probably a lab error."  

After a few rounds of blood work he was convinced that there might be something legitimately wrong with my liver and ordered an ultra sound.  When I could get in for that, the tech laughed when he chatted with me about looking for a fatty and inflamed liver.  "Not likely," he said.  "You don't fit the profile - obese, diabetic."  I am very ticklish and it was an ordeal for both of us.  But he didn't laugh.  He was concerned.  He said, "You have a 50-year-old alcoholic's liver."  

Dr. Semon, told me that if I could lose 10 pounds, exercise, this would probably go away on its own, but if it didn't I would need to get a biopsy.  I had six months.  So I started running again.  I was careful about what I ate, I lost 10 lb,  I ran a half marathon.  My liver enzymes were still 3 x above normal, so he booked me for a biopsy.  "The biopsy," he said, "would hurt a lot, they push a big needle between your ribs and pull out a sliver of the inside of the liver. If you move wrong, they can puncture your lung. So hold still when they tell you."  The drugs knocked me out and I don't hardly remember it, that was a relief. But, the pathologist's report said that 80% of my liver cells were full of fat, but no visible scar tissue.  I was officially diagnosed with Non-Alcoholic Steato-Hepatitis (NASH).  

All of this took about 18 months, and Dr. Semon passed away.  My new doctor assured me that my levels are still dropping (a little less than 3x higher than normal) and that I could probably maintain at this level for "a long time." I still have regular blood tests for liver enzymes.  

Back to the pie: This last week I went in to give my sample, and I noticed that she had requested a Celiac panel as well.  Celiac disease is an immune response to gluten - a key protein in wheat and other cereals, that cascades into a syndrome of inflammation that affects almost the whole body, but especially the digestive system, including the liver.  I went online and started reading about Celiac symptoms and pathology, about gluten free diets.  I was actually excited that this could be the answer.  Many of the worst symptoms I do not have.  My digestion is fast, but not painful, or abnormal.  However, all that I read conceded that the symptoms were variable across many people and some do not show any symptoms other than increased liver enzyme levels - That is me I thought.  I read some very encouraging research studies where people with my liver symptoms within a year of gluten-free diets returned to normal.  Aha, I thought, finally something I could do to take control of this.  I could cut out wheat if it meant that I didn't have to worry about this nagging health issue.  

My test results came back on Monday.  I am probably not a celiac. But, I wish I was, because then I could do something about this. Reading articles about liver disease, there is a probability that changing my diet will affect my liver enzymes, but it isn't a high probability, unless I am a celiac and reacting to gluten.  I realized though that the probabilities mean less when I am the patient, because I am a sample size of one.  There is a probability that the blood tests were wrong, 20% false negative rate for IgA, 5% for the multiple tests.  5 out of a hundred people.  But am I the minority or the majority?

I never understood this about people before now.  My mission president once told me the wonders of bee pollen and colloidal silver for improving his health.  I looked up the papers about both, neither had any significant health benefits in clinical trials.  Why would he take this I thought, it has no evidence to support it.  But, it seemed to work for him.

The only way to test with a sample size of one is to introduce a treatment and measure the response later in time, but that response is confounded by all of the other elements of the changes I have made to my life.  For example,  if I take Vitamin E, while simultaneously exercising, or eating better, and there is an effect.  Which really was the cause?  If I do nothing, and my stress level reduces, that could have an effect also. If I cut out gluten and the levels drop, is it do to decreased gluten or the cascading other changes to what I eat? And there is no control population.  What works for me may be ineffective for 95% of people, but if it works, it works.   So I am left with a dilemna.  One way or another, I am experimenting on myself.  Looking for changes that may be out of my control.  


Becca said...


First, Brian, you are such a good writer. I love when you update your blog.

Second, I was so surprised to find out about the ups and downs of your liver enzymes. You ARE a sample size of one. I wish it was celiac disease, too.

Third, no more pie? Can that really be the answer?!

Please continue tokeep us faithful blogstalkers informed.

Anonymous said...

Really the only way to see if Gluten-free helps is to try it. I would much rather try GF than a diet. :) If you do decide that GF is the answer for you - remember you can always ask us about the "lifestyle." We have found lots of good food - even bread and pizza crust. It has been more than 7 years and it has really changed Dylan's health. It takes 3 months to notice any differences.
I echo Becca's comment, no pie? That shouldn't be the answer
- Auntie Beckie

Erica said...

I have tried an alternative treatment for asthma and intestinal issues called NAET. It worked for this sample of the population.