The week before Valentines day I had been traveling on business. At the end of that week I had a bout of diarrhea. That was my first symptom of Cronkhite-Canada Syndrome (CCS), though I did not know it at the time. That was in February of 2006. The second symptom was the following week. I sat down to a nice Valentines meal with my wife. I believe it was a Caesar salad and a nice steak. I did not eat it all. My wife noticed right away – for I did not often leave steak on my plate. I made a statement at the time – that in hindsight should of made me think something was not right – but did not. I told my wife the steak tasted “tinny.” For the next several months food did not taste good.
I saw an article recently about a company that was trying to farm a berry that made food taste good. Their target market was cancer patients. It appears that for some cancer patients the food tastes “tinny.” I found that interesting. Here is a link…. http://www.miamiherald.com/news/local/community/miami-dade/homestead/article122716684.html
While the first two symptoms were fairly close together. It was 4-5 weeks before the third symptom occurred. During that time – with diarrhea that was getting progressively worse – I had visited my doctor – a general practitioner in a small town close to where I lived. He had referred me to a gastrointestinal specialist. He prescribed some medicine that had no effect and after another few weeks he performed a colonoscopy. Amazingly he did not identify anything amiss – other than colitis. It was not long after my colonoscopy that the third symptom appeared.
I lost my hair – all of it – not an eye lash left – in a matter of a week. The shower drain would clog when I took a shower. The day after my hair started to fall out I was able to get in to my doctor as I was quite concerned with what was going. He referred me to a Dermatologist specialist, that confirmed I had alopecia. and I would lose all of my hair. After 3-4 days I went and had my head shaved.
I knew that As soon as my hair began to fall out there was something significantly wrong. My diarhia was bad and getting worse. The idea of food was awful. I tried all kinds of food – all tasted bad. My go to diet, that I believe played an important role in my health during this time, was Gatorade and Ensure. I got to where I really disliked the taste of Ensure. I tried all flavors – some were better than others – but it was easy for me to chug an ensure. I would try to drink 4-5 ensures a day. I drank Gatorade throughout the day. With no information to support it – I believe this diet was very helpful – for while I was losing weight – I never felt weak. Though this diet did little to help my diarhia.
I was now also bald and in this first 4-5 weeks I lost around 20 pounds. I am not sure when the next symptom occurred, for it was so mild. My skin, and I mostly saw it on my hands, became almost baby smooth and was pigmented, blotchy.
The above four symptoms appear in many gastrointestinal diseases. I believe the last symptom is unique to CCS and it allowed me to self diagnosis CCS. My nails began to die about a third to a half way up – there was a red line that divided the healthy nail from what was not. It happened in both my finger and toe nails. The finger nails were first and the toe nails were a few weeks later.
The above symptoms all occurred in about a 4-6 week period. At the end of this period, I had frequent diarrhea, food was distasteful, I was bald, hands as smooth as a baby’s butt and my nails were dying.
With strong suggestions from my wife – I looked for a different health care environment that was better equipped to address my emerging health needs.