My Story

The objective of this web site is to provide information about Cronkhite-Canada Syndrome (CCS) based on my experience as someone that has CCS. There is limited information available regarding Cronkhite Canada Syndrome as it occur’s so rarely.  I am not aware of any research that is being performed to better understand CCS. I found a single instance several years ago where a doctor at the University of Texas may have been doing some basic search, using finger nail clippings, but it appears he lost his funding and the research was stopped. Most of the information available on-line is a summary of literature for no primary research is being performed. Thus the value of the information to someone that has or believes they have CCS is limited. If you have CCS, the available literature may cause you concern when you read of a 50% survival rate.

I have lived with Cronkhite Canada Syndrome for almost 10 years and to a large extent symptom free. I am not trying to provide medical information or suggestions. I am trying to share my experience – for example, how my diagnosis was made, the treatments I continue to take and the results to date. Lastly, feel free to contact me via this web site. I would be more than happy to talk with anyone who has CCS for we belong to a small club.


Pete Densmore


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….

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.


About 5-6 weeks after I first had symptoms I changed my health care provider from a local doctor to Emory Clinic. I choose Emory for two reasons; 1) even then there practices were integrated with all medical records on-line and available to all of the other doctors and 2) I thought that a teaching hospital would be better equipped to identify and treat a medical condition that was unknown.

I identified an internist at Emory based on his location as his office was the closest located to me and his medical school – that had a good reputation. I met with him and discussed the symptoms. It took about 2 months from the time I met with him to a final diagnosis of Cronkhite-Canada Syndrome.  From an emotional point of view that was, and has been, the most difficult time for I knew I had a significant medical issue – but it was unknown.

There were many tests. Multiple blood tests, MRI’s, CCT’s, colonoscopy – three times (once at the GI specialist associated with the local doctor and twice at Emory), and endoscopy. I swallowed the pill that took a 6-7 hour video of my intestinal system.

Several possibilities were identified including; cancer and leukemia. The process to isolate and test a possible diagnosis would take about a week. The internist was calling to get me appointments with the different specialists. They would review the symptoms, review prior tests results, have me take additional tests, wait a week to receive the test results eliminate what they thought it might have been, communicate they did not know what it was and then repeat – the next week – trying to either eliminate or confirm a diagnosis. This went on for around 6-7 weeks.  The internist’s plan was to go another week or so and if there was still no diagnosis to have me check in to the hospital.  This would allow the tests to be performed concurrently.

I was spending hours on-line trying to identify my condition. The symptoms of diarrhea, alopecia, loss of appetite and blotchy and smooth hands (hyperpigmentation) are associated with several diseases. With the symptom of dying nails – I was able to narrow down the possible conditions. Eight years ago there were fewer articles on Cronkhite-Canada Syndrome than there are today – not that there are many today – for most of the articles provide summary information and mostly say the same thing. I identified two possibilities; 1) radiation poisoning and 2) Cronkhite-Canada Syndrome.

In addition to these symptoms were the results of the tests and procedures. Hundreds of polyps existed in my colon, stomach, and small intestine (though with an endoscopy only the duodenum was visible). There was a pattern – initially my colon had the most polyps, then the stomach and then the small intestine. In the first colonoscopy performed by Emory my colon had hundreds of polyps and my stomach a modest amount. Around 4-6 weeks later another colonoscopy and endoscopy was performed. The doctor that performed the procedure was concerned for I had progressed to hundreds of polyps in the stomach and many were located at a bad spot – where the contents left the stomach and entered the small intestine. She was concerned that I could get a blockage. Though I never did.

Prior to the second procedure I told the doctor that I believed the symptoms were associated with one of two conditions; radiation poisoning or CCS. She laughed about radiation poisoning.   Cronkhite-Canada Syndrome was the diagnosis from the Emory pathologist.  At last there was a diagnosis.  It took two months from the time I went to Emory and over 3 months since I had the first sympoms.

I then spent many hours researching the information available that was limited. The first article I read on Google communicated within the first paragraph that the survival rate was around 50%.

Initial Treatment

After the diagnosis by Emory I wanted a second opinion. I went to the Cleveland Clinic for in the articles I had read there was a doctor there that was a polyposis specialist and may have treated one Cronkhite-Canada Syndrome patient. Since then I know that Mayo Clinic has treated at least two patients with CCS.

The Cleveland Clinic confirmed the CCS diagnosis. One doctor did the colonoscopy and the doctor that I had identified as a specialist did the endoscopy. They also were in agreement with my initial treatment.

The initial treatment was; Sulindac (a prescription NSAID) Rantidine (Zantac) and Loratadine (Claratin). Sulindac was to reduce inflamation. Zantac is a H2 blocker – that is how it reduces acid in the stomach. Claratin is a H1 blocker. The literature indicated that other cases had treated CCS with a combination of these three prescriptions. Ten years later I still take these three drugs.

After the diagnosis I had an extensive battery of blood tests done. At that time I was diagnosed with low vitamin B12 – so I started taking that. A few years later I was diagnosed with low vitamin D – so I started taking that. I still take both.

Before my diagnosis I had went on a Prednisone ladder over about a 5-6 week period. It made a significant difference in my diarrhea. The principle behind the treatment was to treat the symptoms – for there was not a known cause. The Cleveland Clinic supported that approach. Though there was one exception – I also took a strong antibiotic for 7-10 days – as that was also mentioned in one of the articles. I have no idea if that helped or not.

I took the above prescriptions for a month. I was not getting any better. The gastroenterlogist relied on a recommendation from the doctor that specialized in nutrition. He recommended that I take an anabolic steroid for a month. At the beginning he said it would only be for a month and he would not extend it. He also recommended for me to take mega doses of zinc. I can’t remember the dosage but I was taking 3-4 large zinc pills 3-4 times a day. Three weeks in to this treatment – seven weeks after the initial diagnosis I began to notice a difference. My appetite was returning. I had also went on a second predisone ladder (at a lower dosage) as I continued to have diarrhea.  After I went off prednisone the second time – my diarrhea did not return. In a few more weeks I began to grow hair – yeah. It took several more months for my nails to turn to almost normal.

Initial Recovery

The initial treatment addressed most of my symptoms. About six months after the initial symptoms I was feeling close to normal.  The only indications that I had Cronkhite-Canada Syndrome was my nails were still not normal. My thumbs and index fingers were “clubbed.” They would grow real thick.  Every week or so I took a heavy duty emory board and sanded them down. I also had a scar to the right of my belly button – starting about 3 inches below and extending to about 6 inches above. This was related to having my ascending Colon removed.

During a follow-up colonoscopy and endoscopy – I believe the third from Emory over about a 5 month period,- for it took place a few days before the 4th of July, my Colon was perforated. The colonoscopy identified an area of concern. The doctor had taken many biopsies and there was a particular area of my ascending colon she was concerned with. Before I left to go home from the colonoscopy she had made me an appointment to have another procedure done (I can’t remember if it was MRI or CCT) – I had to drink some nasty contrast before the procedure.  I believe the Colonoscopy was on a Tuesday and the MRI/CCT was scheduled for Friday. Thursday was the 4th of July. We went to the fireworks like we always did and had a good time.

I woke up about 3am with a significant pain on my side. I got up and took some aspirin and got dressed. My appointment was for an 8am procedure. I left for the clinic around 6:30 and called the doctor around 7am. She answered her personal cell phone that she had given me in case of an emergency. I told her what was my symptom. She said she would call the clinic as she wanted someone to look at the results as soon as possible and that I should call her after the procedures. Which I did.

I called her on my way home, just after I left the hospital. She asked that I not go home, to park close by and she would call me after she talked with the doctor that would interpret the test results.  In hind sight I believe she had a good idea of what had occurred.

She called me back about 20 minutes later. The test had identified the colon was perforated in the area where she had taken several biopsies. It appeared that part of the colon was diseased.  I turned around and checked myself in to the hospital. Later that day the infected area was drained. A tube was left in for additional drainage – but there was little drainage after the it was initially drained. I was on an IV and an antibiotic for 8 days.

A few weeks after I left the hospital I was back – to get my Ascending Colon removed. At this point even though I was not having any external symptoms I had to many polyps to count. In some places on the color pictures from the colonoscopy there was as much white (the polyps) as pink – the healthy condition. The removal of the Ascending Colon was uneventful. The reason for the big scar was the doctor wanted to get a good look at my colon to get a better sense of the overall condition – that was okay.

Initially the doctor had talked about removing more of the colon – but I would only agree to remove  what was dieased.  He ended up agreeing that was the best approach.

Remission and Steady State Treatment

I have an annual colonoscopy and endoscopy. So I had the procedures completed about a year after my surgery to remove my ascending colon. This was around 18-20 months after my first symptoms. The results were positive in that the number of polyps in my colon were significantly reduced. There were fewer in my stomach but still many. The duodenum was worse. This is a pattern that occurred a couple of times.   Initially the colon was worse, then the stomach and then the small intestine. The remission followed this same pattern – with the colon the first area to go in to remission.

You can debate if my Cronkhite-Canada Syndrome has ever went in to remission – in that I have never been polyp free since the initial on-set. However, for 6-7 years I had no external symptoms and the number of polyps in my colon and stomach continued to be few. I always had a section in the duodenum with many polyps.

The number of polyps in my second annual set of procedures were significantly better in both my colon and stomach. For several years I had a few polyps in my colon that were often removed during the colonoscopy. This ranged from 3-4 to 10-12. A few times they were not removed but were documented and watched. They were always benign. Sometime around year four or five I actually did not have any polyps in my colon. Around 3-4 were identified in the prior colonoscopy. The doctor was amazed as this was the only time that she had ever seen polyps go away.  The number of polyps in my stomach at that time were minimal. At this time you might of considered me in remission as I was having no symptoms, no polyps in my colon, a few in my stomach and the duodenum had also improved.

During this time my treatment was unchanged. I was taking the three presciptions; sulindac, rantidine and loratadine. Vitamins B12 and D along with a general vitamin. I had annually both a colonoscopy and endoscopy. Generally there were a few polyps – but not many.

It’s Back

In the fall of 2015 I had my annual colonoscopy/endoscopy.  For the prior 2-3 years I had either no or few polyps in my colon, a few in my stomach and many in the duodenum. Over the last year one symptom had reappeared.  My nails – while not dying – were no longer normal.  I had to cut them frequently or they would break or become ingrown.  The nails on my thumbs were a little thicker.  Before the procedures I told the doctor that unlike the previous years where I always thought there would be no polyps – I thought there would be more – based on my nails.  Unfortunately, I was right.

I had many polyps identified during my 2015 procedures.  In the colon in the range of 15, in the stomach there were to many to count.  There was also an increase in the duodenum.  It was not welcome news.

The doctors recommendation was to treat the new polyps aggressively with additional medications.  Two new prescriptions were added; Lialda (mesalamine) and mercaptopurine.  My perception is these drugs have the potential for higher side affects or consequences for the medications I have been taking for a long time – NSAID, Zantac and Claratin – are taken for years by many individuals .

In the fall of 2016 my annual colonoscopy and endoscopy was performed.  There was a slight improvement in there were a few less polyps in the colon, the stomach and duodenum were about the same, with the duodenum having many polyps.

The primary external symptom continues to be my nails.  I do have mild bouts of diarrhea from time-to-time – generally 2-3 months apart. I have no other symptoms.

Liver Enzymes and High Iron

For the last several years my liver enzymes have not been normal – but just a little high.  During my normal physical in the summer of 2015 the blood tests identified continued high values for AST and ALT. My doctor thought is was time to look at this in more detail and referred me to a hemotolgist.  He defined many blood tests to be performed.  They identified that my iron levels were high – very high.  The normal range for Ferritin is 24-336. My test results in July were a little above this range. I had many blood tests performed over the next several months. In March of 2016 my levels were over 3.300 – almost 10 times what was considered normal.  Additional tests were performed to try to identify the root cause of the high iron levels.  One of the tests would have identified if hemachromotis was the cause – the test was negative for this condition.  A liver biopsy was performed – the biopsy showed my liver was normal – with a little fatty liver. The doctor said all of the test results were consistent with hemochromotis – that I had tested negative for.

The net is the root cause was not identified.  The cause is likely related to either Cronkhite-Canada Syndrome or one of the medications.  The hematologist believes CCS is the likely cause as there is a strong relationship between the intestinal system and the liver.

I had eight phlebotomies (one a week) that brought my Ferritin levels down in to the normal range.  The current approach is to have blood tests performed every 8 weeks with one phlebotomy performed every six months.  My iron remains in the normal range – though not as low as the doctor originally targeted.  I meet with the doctor in a few weeks to determine if I will continue on this schedule.

S is for Syndrome

At the risk of over simplification or being inaccurate – I will attempt,  to define a “syndrome” and why it is different than a “disease.”  My understanding is that a disease has a known cause.

A syndrome is defined by it’s symptoms – so for Cronkhite-Canada Syndrome, it would include the hundreds of polyps, weight loss, hair loss, loss of appetite, hyperpigmentation, loss of nails, etc.  However the cause of those symptoms is not known.

So if you have a disease and somone else has the same disease – you would be having similar reactions to something similar that is going on in your bodies.  If you and someone else have the same syndrome you would both have the same symptoms – but the cause of the symptoms would not be known.

I read something that made the most sense to me – it was a progression of the understanding of something that is happening in the body.  From least understood to most understood – the progression was; symptom, syndrome, disorder and disease.

Does Trauma Play a Role in CCS

I have talked with two other individuals that also had or have Cronkhite-Canada Syndrome.  One person sold school buses and my sister managed a trade show for school principals and school boards.  Hundreds of suppliers to school systems participate in the show, from selling milk to selling buses.  This individual was at all of the shows my sister managed until a few years ago when he talked with my sister and said he could not attend for he had this strange illness with no known cause.  He started to describe his symptoms.  My sister told him her brother also had a similar strange illness.

To shorten the story he also had Cronkhite-Canada Syndrome and called me.  We talked several times.  About a year  before I started having the CCS symptoms – I had an accident and broke both legs close to my ankles (fibula and tibia in my left leg and the tibia in my right).  I had issues with my left leg healing correctly.  I had four surgeries over about a years time.

Bob, the bus salesman, had a bad motorcycle accident – I believe it was about 1-2 years before he started having CCS symptoms.  Likely a coincidence – but who knows.
I asked Ron, the other person that had Cronkhite-Canada Syndrome I talked with, if he had any trauma in his life.  The answer was no – the first time he had every been in a hospital was when he was admitted to perform TPN – to provide him nutrients for he had lost 90 pounds.

So with a sample of two I thought it was possible that trauma played a role. With a sample of three – likely not.